Over the years this has become much more than just a description of one child's adhd. The blog has expanded to cover many physical and psychological conditions that have affected my family, including headaches, asthma, learning disabilities, teen pregnancy, adoption, unemployment, drugs, jail, bankruptcy, and family dynamics. There's a lot going on, an dat times we are stressed to the limit.
The book is divided into 5 web pages, chapters if you will, that describe: (1) children with add and adhd at home and at school, (2) teen pregnancy, (3) driving and traffic tickets, (4) drug addiction, and (5) adulthood and independence. Since this narrative is chronological, each chapter is not necessarily a self-contained topic. For instance, John's adhd persists into his teen years, even as Kisha begins experimenting with sex, thus you will still find some of his high school challenges in chapter 2. Later on, Kisha has her third child as John is falling into drugs, so that is addressed in chapter 4, as we are desperately trying to keep John out of jail and out of danger. This said, I still believe the chapter demarkations are helpful, as they represent distinct phases of our lives with unique obstacles and differing family dynamics.
Although there are 5 separate web pages, the table of contents below lists all the sections in all of them. Click on anything that interest you and jump directly to that section.
Don't assume, based upon the above paragraph, that I am steadfastly anti-drug. I am certainly not. In fact I am all too cognizant of the longitudinal studies that connect untreated ADHD with addictions and criminal activity in later life. All too cognizant, as my son sits in jail for possession of a controlled substance. All too cognizant, as he must admit to a felony on every housing and employment application for the rest of his life. All too cognizant. If ADHD can be controlled in any way possible, the life outcome is better. The primary goal is treating the condition effectively; the secondary goal is minimizing short term and long term side effects. Of course those side effects are hard to predict at the outset. My son's liver was very weak, and susceptible to damage from ongoing drug regimens, but we did not have access to his medical history until much later. So I gave him ritalin, and other meds, and they even helped for a while. But then they stopped working, and side-effects began to appear. If a prescribed medication works for you or your child that's great, but we had to find another way.
|Your article is honest and well written. I am now convinced that my daughter has a serious behavioral disorder, and that it will respond favorably to diet therapy. Unfortunately I don't know where to begin. You have tried so many things, and some of them helped, and some of them didn't. I don't have the time or the patience to go through that process. I need to learn from your experience. What can I do right now, today, that will help?|
With this sentiment in mind, I'm going to mention a few things you can do that might help, and won't do any harm. The first is by far the most important, and it has nothing to do with foods or diet or meds. Don't let them drive. When these kids try to make adult decisions at age 16 the results are disastrus. You'll see why when you get to chapter 3. Unless they are on the honor roll at school, or have proved themselves in some other way (e.g. community service), don't let them drive. Don't give them a license, and don't give them access to a car - not til they're 25. Just don't do it! In the meantime, here are a few suggestions if your child is still in elementary school and bouncing off the walls.
If your child's disorder responds to diet, and it may not, there is a 3-prong fork in the road: he reacts to specific foods and/or additives, he is vitamin/mineral deficient, or he harbors a microbe that causes most of the trouble. The approaches are vastly different depending on these branches. Unfortunately I spent years traveling down the food allergy branch, when there was really a microbe at work. The unwelcome pathogen ate almost everything my son ate, and dumped its toxins into his blood stream, where they derailed the orderly operation of his brain. Some of these toxins were eventually confirmed by blood tests, so unusual they had to be sent to the Mayo Clinic. I treasure these lab reports to this day, to reaffirm the fact that I'm not crazy. I'm not just waving magnets around. If you've read all the usual books you may be thinking yeast, but I think it's more complicated than that - a mix of bacteria and yeast living in a biofilm. Battling a microbe is far more difficult than testing for a few food allergies, which is why we spent years searching diligently for answers.
Some of these suggestions represent compromises for a child who lives in the United States, where junk food and fast food is ubiquitous. We can't afford to be draconian in our efforts, or the child will simply sneak at school, and then we're getting nowhere. I'm not thrilled about my son drinking soda, diet or otherwise, for example, but when the whole class goes to McDonalds as part of a field trip, what is he suppose to do? An adult may benefit from a more restricted protocol, but we rarely have that option when trying to help our children, who must deal with the public school system and other social situations, e.g. eating dinner at a friend's house. So we do the best we can.
Drink water - distilled or filtered water if you can get it. It's good for our pets and livestock, it was good for our ancestors for millions of years, and it's good for us. No soda, no juice, no alcohol, no coffee, no sports drinks - just water.
After you've tested it, and you know it's ok, a glass of milk once in a while is probably a good idea, for its calcium and vitamin D. It also gives your child something he can drink at lunch while others are drinking their corn syrup. He doesn't feel so out of place in the school cafeteria. But bear in mind, there are some kids who react to milk.
Unless you are very unusual, unsweetened tea is ok. And club soda with a bit of fresh lemon or lime is a good substitute for soda pop. I still order this at restaurants today. Other than these items, drink water, period.
Soda pop and juices are particularly damaging. Drinking sugar concentrate, even from real fruit, is like pouring jet fuel into your car. We're not built to handle it.
Avoid refined sugars. Again, this helps beat back the microbe if there is one. And if you don't have a microbe, well, you're less likely to get diabetes, and that's reason enough to avoid sugar. There is some refined sugar in my son's cereal, because he won't eat Shredded Wheat, and occasionally he has a cookie or two. No need to be microscopic about it - just don't eat foods like candy and chocolate all day long. And don't put sugar on/in things.
Don't eat artificials. Especially avoid the feingold and glutamate additives. For gums and preservatives etc, just use good judgment. Some brands have fewer chemicals than others; read the labels and buy the better brands.
My daughter reacts to MSG, red#40, lavender, and cats, while my son tolerates all artificials without trouble, And they are full siblings. It's very individual.
Avoid fake sugars. When sweets are withheld you're going to be in withdrawal. You're going to buy every sweet tasting sugar free item on the market. Many of these have sugar alcohols, like manatol or sorbitol. If you're fighting a microbe, these are no better than sugar, and they may be worse. The bacteria can metabolize more sweets than you can, so avoid sugar alcohols.
How about the synthetic sweeteners? Sucralose is new; I don't know much about it. Saccharin is pretty safe, but hard to find, thanks to Reagan and Rumsfeld. Nutrasweet is ok for some people, but not ok for others, so avoid it at the start. And if it seems ok, limit one serving per day. I know three people personally who were all right with it on occasion, but got hooked, and started drinking/eating diet nutrasweet things all day long, and reacted badly to it in different ways. My sister was up to 7 diet sodas per day, until it started to affect her vision. It's a fake chemical, don't push it!
Here is an update to this section, ten years after I first wrote it. Nature, a reputable science magazine, printed an article in its September 18, 2014 issue - artificial sweeteners cause insulin resistance, diabetes, and obesity - the very maladies they are designed to prevent. This result does not surprise me, though the underlying mechanism is a bit unexpected. In any case, it's quite a diversion from the foods we have evolved to eat, so with this paper in hand, I wouldn't touch any of the artificial sweeteners.
Avoid white foods, refined flours, white rice, white/sweet potato, and other forms of pure starch. This is another form of jet fuel that our bodies aren't equipped to handle. My son does better eating whole grains. The fiber is important. It regulates digestion, so the nutrients don't pour into his system all at once. Beyond this, it feeds the good bacteria, which out-compete the bad. There are plenty of good whole grain cereals, and even whole wheat noodles for spaghetti. Buy whole grain bread that has fiber and not a lot of added sugar. Serve brown rice instead of white. This also helps with vitamin deficiency.
If you read the rest of this blog, you'll notice I spend at least a year doing, and championing, exactly the opposite. I was following the failsafe diet, which promotes white flours and potatoes and white rice, and all the sugar you want - and I was convinced it was helping! I have two advanced degrees; how could I have been so stupid? The answer to this question, if there is one, is rooted in human psychology. When we are desperate, we try many things, and if one of these tests is followed by a good day, or a good week, we glom onto it like a religion. Of course good weeks happen, and bad weeks happen, for reasons that we don't understand, so we are deceived by false patterns and coincidences and statistically insignificant data sets. When I talk about the virtues of the failsafe diet, with its white flours and white sugar, and scarcely a fruit or vegetable in sight, realize that it was just an experiment, and nothing more. It's glorious successes were not reproducible, and I have since moved on.
"Science is a long history of how not to fool ourselves." - Richard Feynman
Avoid iron fortified foods. This is only an issue if you are fighting certain bacteria. See the November 20, 2004 issue of Science News. Of course everybody needs iron, so check with your doctor. Most Americans get enough, thanks to the ever popular hamburger. If anemia persists, there's always liver and spinach.
Eat whole raw fruits. Not dried (e.g. raisins), not overcooked, not canned sitting in sugar or its own juice. We are built to eat fruits. We need the fiber, along with the natural sugars. This fiber is contained in the skin and flesh of the fruit, and is lost if you only drink the juice. Whole fruits and vegetables, in variety, at least 2 or 3 a day.
This also helps if you are vitamin/mineral deficient, because a wide variety of raw fruits and vegetables will give you the vitamins you need. I know - some people say you can't possibly get your vitamins from food, and this may be true in some cases, but it runs counter to evolution. Besides, they're trying to sell you supplements, so their motives are suspect. Also, a vitamin supplement will probably feed the yeast more than it feeds you. It could make you worse, and it's yet one more variable you have to track.
Eat veggies, cooked or raw. Peas and green beans are good, as they bring in fiber for your good bacteria. Carrots, lettuce, peppers, tomatoes; all good.
If all these steps don't help, avoid the common allergens: wheat, dairy, corn, soy, nuts,shellfish, citrus, and artificials.
It all comes down to evolution. We're built to eat what our ancestors ate for the past hundred thousand years. That's uncontaminated meat, fish, fruit, occasional vegetables, and occasional whole grains and nuts. Of course it is difficult to eat the ancestral diet when everyone around you is eating cupcakes.
And now for our story. Let's start at the beginning, when we adopted two special needs children.
Although we were told the boy (I will call him John) had ADHD, we really didn't know what that entailed. And nobody told us the girl (I will call her Kisha) had ADD, because nobody knew. She seemed like a model child with no behavioral issues whatsoever. Yet by October we realized both kids shared a serious neurological disorder that evoked different symptoms in the two siblings. And by late December we were convinced both children would eventually improve with diet therapy. We didn't know that "eventually" was measured in years, perhaps decades, not just a few months.
When John first entered our home I watched him carefully as he interacted with the family dog, since this is a prime indicator. He bonded with the dog immediately and treated her with kindness and empathy. His love for his birth sister Kisha was also evident, and his somewhat desperate love for us grew with each passing day. He did not exhibit any form of attachment disorder. Still, he was unmanageable - out of control. He broke three items per day, some trivial and some valuable. There was no malice or vandalism, we were simply living with Curious George incarnate. At the same time he often inflicted minor injuries on his sisters through reckless play. He was in constant motion, babbling loudly and incessantly from morning til night. Most of the time his speech exhibited the impediments of a child half his age: W replaced R and L, and the pitch was high and squeaky. I call this "Elmo-speak". Although he was always getting into trouble, often defiant, and sometimes violently oppositional, there were times when the sunshine of his kindness and intellect broke through the storm clouds of hyperactivity, rare glimpses of hope in an otherwise dark and tumultuous world.
Despite a series of parenting classes in two different states, our attempts at behavior modification were failing miserably. I finally realized he could not control his actions. Our battery of admonitions and time-out punishments accomplished nothing; they only served to pummel his already weakened self esteem. One night, after an entire day of misbehavior and physical containment, this remarkably perceptive 6-year-old said, in a defeated voice, "Daddy, I'm trying so hard. But I'm very tired. I just want to go to sleep." Although he could not fully articulate, I was able to read between the lines. "I'm tired of always getting into trouble, tired of being the bad boy at school and at home, tired of hurting my sisters, tired of exploding into anger every time you ask me to do something, and tired of fighting you with my words and my fists, because I really do love you." As he began his pre-sleep rocking in his bed I started to cry. I too was tired. Tired of monitoring his every move from morning til night, tired of putting him in extended time-outs, tired of declaring rooms and activities off limits, tired of physically managing his tantrums, and tired of the steady stream of sincere apologies from his small, broken spirit. "Sorry I hit you Daddy. Sorry for all the things I did wrong today." His contrition was always genuine, because his actions were not his own. I borrowed a couple of tissues, told him I loved him, and left the room.
As the weeks rolled by I noted wild fluctuations in his response to the drug. One day the dose was inadequate, allowing subterranean hyperactivity to burst forth like upwelling magma. The next day the same dose was excessive, squashing him into the fetal position under a blanket. On two occasions the drug produced symptoms of autism. He twirled around on the floor, banging his head and moaning. He was incapable of saying any words or responding to questions. He was terrified as he tried to hide from something he could not comprehend or evade. When I questioned him later he remembered every detail - the episode was not a ritalin induced seizure (though these do exist).
Each morning we tried to calibrate his ritalin based on his activity level. As described above, too high or too low would lead to disaster. Keep in mind, we were administering the drug by cutting 10mg tablets into pieces, an inexact science at best. We certainly couldn't roll the dice in the morning and send him off to school, hoping the dose was correct for that day. Although it bought our family some short term sanity, ritalin was not a viable treatment for the long haul. We had to think of something else.
The fundamental question is, why the day-to-day fluctuations? What causes his ADHD to ebb and flow? Logically, we should focus on the things in his life that most directly affect the brain; at least that's a reasonable place to start. Each day his brain is awash in the nutrients and byproducts of his most recent meals, so I decided to examine his diet. I dredged up a 20 year old memory, something about hyperactivity and artificial colors. As a teenager I didn't think much about this scrap of knowledge, but now it seemed relevant. Throughout the weekend I let John eat the most artificial meals I could think of, culminating in a dinner of toaster blueberry waffles and cheap pseudo-maple syrup, more corn than maple. We would start the restricted diet Monday morning.
As if in confirmation, Monday was one of the worst days he has had in our home thus far. His idea of a hug resembled a flying tackle, babbling all the while. He raced up to the dog, stopping inches from her face as she backed away in alarm. Any other dog would have snapped - we are lucky to have such a gentle animal. Clearly he was a danger to himself and others. The ritalin tablets we administered were about as effective as pissing into a forest fire. Contrast this with his behavior on Wednesday, just two days into a more wholesome diet. We cut his ritalin dose in half, 5mg in the morning and afternoon, and the reduced medication still kept him on an even keel.
As I searched the web I quickly discovered The Feingold Association, a non-profit organization that performs research on behalf of its members. My check went out with the next day's mail, and a couple weeks later I received the introductory materials. Glancing through the buyer's guide, I soon realized why this organization is essential. We were making so many mistakes! To site one example, we gave our kids milk frequently: in the glass, on cereal, and in cooking. We gave them 2% because it's "healthier", and it doesn't list any additives. It does say "fortified with vitamin A", but we didn't give that a second thought. The buyer's guide told us that vitamin A is preserved with BHA, something the dairy industry is not required to report. We now serve whole milk, cut with water to reproduce 2%. But how could we, the consumers, obtain this information? We couldn't, if it weren't for the Feingold Association. If you are trying to implement a restricted diet on your own, by reading labels, you are paddling upstream. Join the Feingold Association today.
NFF: Note From the Future, out of chronological order.
As a broad statistical statement, the natural protein in milk, or the lactose sugar, causes many more allergies and sensitivities than the trace amount of BHA that is present in 2%. In fact you are more likely to react to natural foods, such as wheat and corn and peanuts, than manmade additives. However, there are exceptions to every rule. I know someone personally who has a life-threatening reaction to red#40. None of the other additives - just red#40. Therefore we, the consumer, ought to have all the information, right there on the label; we shouldn't have to rely on various non-profit agencies to find out what is in our food.
NFF: Kisha also had severe asthma, although her attacks were infrequent and unpredictable. On three occasions we had to rush her to the emergency room. We soon saw a pattern: she reacted to artificial fragrances. Indeed almost all attacks occurred after exposure to a strong perfume. So we kept her away from artificial scents, but then exercise in cold weather brought it on, so we kept her indoors on cold days. Then smaller attacks came for no reason at all. When we put Kisha on a more wholesome diet her asthma attacks backed off somewhat, but withholding additives wasn't enough to quell her asthma completely, as it did John's. We had to do more detective work.
NFF: We now know that Kisha reacts to red#40 and MSG. These cause a migraine the next day - no fail. All the other additives are ok, even yellow#5 and blue#1. She also reacts to pollen and other seasonal allergens, not by sneezing and sniffling, but with a migraine. Who would think to treat persistent headaches with Allegra? Human physiology is strange indeed.
The Feingold drug guide lists only two clean anti-ADHD medications: a 20mg ritalin tablet, which is too strong for this young, small boy, and a stimulant that can cause liver damage. We were definitely between a rock and a hard place. If we wanted to be 100% additive free, we had to curtail all medication, whence John certainly could not attend school. Fortunately winter break was just around the corner, a time to experiment. I decided to suspend all medication. We can never go back to ritalin - that much is clear - and I wasn't willing to subject John to any more medication. John was placed on numerous drugs, ritalin included, at his group home, by a trained psychiatrist, and according to the reports, he reacted badly to all of them.
Halfway through winter break, John showed definite signs of improvement. He wasn't ready for school, but he grew calmer with each passing day. Until Friday morning that is, when Mr. Impulsive snuck into the refrigerator and ate an unauthorized toaster breakfast treat (raw), which contained two yellow dyes and two preservatives. This set the clock back to zero, with school just three days away. I was furious, frustrated, and overwhelmed. He certainly wouldn't be ready for school by Monday morning, and we had no way to treat his symptoms.
If you read the Feingold materials, or other books on the subject, you are often advised to create a 100% safe home. There should be nothing in the kitchen that contains dyes or preservatives, or whatever you are trying to avoid - nothing for your child to get into that would cause trouble. Once again that is the theory, but I live in the real world. My wife also suffers from a chronic health condition, irritable bowel syndrome, which can be completely managed by diet. It took me three years to figure out how to do it, but that's another story. She must eat certain foods on a regular basis, and they aren't all Feingold compliant. In addition, we have a border who is not excited about jumping on the bandwagon. Unless we evict her, her food will always be in the kitchen, and illicit snacking remains a constant threat.
As school resumed, John was entirely unmanageable, and his teachers and principal wanted him back on ritalin right away. I refused. Ritalin wasn't working in any case. "We are going to manage his symptoms with diet." I declared flatly. "If he's too much for you to handle, we'll keep him home until he is stabilized." They didn't want one of their students sitting at home, but they certainly didn't want John in the classroom either. They could not comprehend our reluctance to medicate our son into submission; apparently they never met parents like us before. Finally they agreed to our little experiment for three weeks, whence we would reconvene and evaluate the situation. Based on our progress during the first half of winter break I told them they would probably see significant improvements before our next meeting. In other words, I stuck my neck out - perhaps a bit too far.
After the meeting, John was calming down again, and I was sure we were on the right track. I was already rehearsing my "told you so" speech, but an hour after dinner, "All hell done broke loose now!" This was a Feingold-safe meal - yet it induced a violent reaction in my son. Apparently other variables were in play.
Since the elimination experiments we ran in January were tainted with ritalin, there results were suspect, a waste of precious time. The yellow dyes exacerbated his symptoms, while the medication suppressed them. Any patterns in his behavior were lost in the noise. Since he was now off ritalin, we were ready to run the experiment again.
With the sands of John's childhood slipping through the hour glass of time, I was determined to obtain positive results quickly. In January we eliminated one food at a time, because that's the easiest way to proceed, but it doesn't guarantee success. If your child reacts to both wheat and corn, withholding one of these two grains, usually by giving him more of the other, accomplishes nothing. With April at hand, we decided to eliminate all potential allergens at once, without really knowing what they were in advance. The rough criterion is: eliminate any food that your child eats more than once a week. We started serving scallops, artichokes, mangos, and other exotic items that are entirely foreign to a 6-year-old American. Fortunately John likes everything, so the novel foods were well received.
In five days John was functioning at school, learning his letters and numbers. He still required constant one-on-one attention from his special ed teacher, but we stopped getting those mid morning calls asking us to come pick up our unmanageable son. We were making progress.
Slowly, very slowly, we reintroduced certain foods, watching for adverse reactions. These challenges were usually administered on Friday afternoons, giving John the weekend to recover before school on Monday morning. Thus we could only test one item per week, a very long and tedious process. Unfortunately the first test was a grand failure. We gave him two bowls of pure oatmeal, a Feingold approved brand of course, and he was extremely hyperactive for the next four days. This was quite odd, since he had a bowl 36 hours earlier with no reaction. I couldn't explain this discrepancy, so I assumed he had a cumulative reaction to oats or gluten. John would remain gluten free for the next several months. We rushed to the healthfood store to purchase rice bread, rice cereal, and rice noodles.
A week later we tried tomato, which produced another reaction, though not as severe. I saw spaghetti, chili, shrimp creole, and sloppy joes fading into the sunset. Subsequent tests revealed sensitivities to corn and all corn products such as corn syrup, eggs, the gas grill (i.e. combustion products), and grasses (don't take him on a hay ride or ask him to mow the lawn). No wonder single elimination trials did not elucidate John's plethora of sensitivities.
NFF: Most of these conclusions, phantoms of a statistically insignificant data set, would evaporate under closer scrutiny. Humans are very good at creating patterns out of random noise. Even the multiple elimination diet described above could not squelch John's hyperactivity for long, we just got lucky during the first three weeks of its implementation.
Ironically, his food sensitivities don't exist at all, and they never did. He does not react to this food or that food per se. It's more complicated than that. He reacted to oatmeal in a big way because oats are high in carbs and oligosaccharides. These sugars feed a colony of pathogenic bacteria that live in his colon. The colony thrives, and their metabolic byproducts enter his blood stream, cross the blood brain barrier, and derail his neurotransmitters. Unfortunately it will take us years to figure this out.
With wheat and corn off limits, we had given John some form of rice every day - practically every meal. If you've read the literature on food sensitivities, you know this practice is discouraged. Patients should wait four days before eating the same food, and even skip a day before eating from the same food group. Perhaps John had developed a sensitivity to rice, where there was none before, and because we assumed rice was safe, we were implicating several other food items. This is like the game of Clue. Make one mistake and you have jumped the tracks; the rest of your deductions are entirely bogus. This represents an incredible waste of time and energy, ours and his.
We put John on a rotation diet. If he eats chicken on Monday, he doesn't get it again until Thursday or Friday. With rice off limits I decided to return to corn and wheat. To my surprise he had no trouble with either grain, in moderation and rotated. We cycled through: corn, no-grains, wheat, no-grains, repeat. We also exonerated several foods that were actually innocent, they just happened to be served with rice. We were back on track and getting good data again. Furthermore, we were unlikely to create any new sensitivities, thus guaranteeing a suite of safe meals.
NFF: In reality, we did not induce a rice sensitivity, although that was a reasonable hypothesis. Rice is the safest food on the planet. The most sensitive people on Earth eat rice with almost every meal, for life, and have no trouble. John was reacting to the fluffy white rice, with tons of carbs and no fiber. Brown rice is better, in moderation, and as part of a controlled diet. It's all about carbs, carbs, and carbs.
We don't follow a strict rotation diet any more, though I do make a modest effort to rotate starches and meats. If he has lots of rice one day, he may have potato the next. Diets can be so restricted, so difficult to implement; you should probably set rotation aside at the start, unless you find you are making no progress at all.
There is an important exception. If you know you are, or were, sensitive to a particular food in the past, you should eat it in moderation, and rotated. I had a terrible response to corn ten years ago, a racing heart and high blood pressure, so I only eat corn every four days or so. Sometimes I eat a lot of corn, and that's ok, as long as I take a break from corn thereafter.
The next several sections involve various theories surrounding carbohydrates. It seemed like he always had trouble with high starch meals, so we began to count carbs, simple and complex. Perhaps he could not regulate his blood sugar properly, or perhaps he had a serious microbial infection. Read on as we pursue these theories.
In addition to yeast, a high carbohydrate diet allows naturally occurring yeast to multiply in the patient's intestines. Simple sugars, including fruit, can elicit the same symptoms as yeast. If John's ADHD was yeast connected, all prior elimination experiments and their resulting data were destined for the trash can.
If I hadn't already read several books on yeast-related illnesses, I never would have thought of this connection on my own, and the Feingold association has little to say on the subject. In fact, they declare "sugar is not an issue", and for many people it isn't. However, no one book has all the answers, and no single organization provides the magic bullet.
We put John on a yeast free diet and cut back on carbohydrates. We went back to the healthfood store to purchase several yeast free wheat products, including breads and pastas. John did not react to any of these, though we must serve them in moderation due to their high carbohydrate content. Apparently John does not react to wheat; it was the yeast embedded in most wheat products. We even brought rice back, although it has an extremely high carbohydrate count, so we have to be careful.
After a couple weeks on the yeast free diet a class of symptoms virtually disappeared. To summarize, we took the H out of his ADHD. John no longer raced around the house - he didn't even fidget. Nor did he wake up early, unable to get back to sleep. But what about his remaining ADD? He still couldn't focus on an academic task, and was easily frustrated at the slightest disappointment. He was certainly not ready for a full day of school, and first grade was just two months away.
Throughout July we tested a number of simple sugars: cane, beet, honey, maple, corn syrup, banana, apple, etc. Some children are sensitive to yeast and/or specific sugars, but do not actually have a candida infection. These lucky individuals can use a different form of sugar to sate their sweet tooth. Not so with John. The slightest dose of refined sugar, from any botanical source, sent him into overdrive, and even natural sugar was a problem. We must restrict him to one piece of fruit per day, and the fruit must be free of yeast/mold, which rules out grapes, raspberries, and cantaloupe. Also, fruits must be rotated, and served with or shortly after a meal.
We resigned ourselves to a life of planning, shopping, cooking, cleaning up, and analyzing. Every meal must be made from scratch, three times a day, plus an afternoon snack and dessert.
In late July we sent John to a summer day camp at a local school, and he did just fine, with no psychotropics in his blood stream. Granted, they didn't ask him to perform any challenging academic tasks, but the kids did watch movies and engage in arts and crafts, activities that were beyond his capabilities a few weeks earlier.
NFF: We now know that John suffers from a chronic microbial infection that drives most of his symptoms. He's always had it, and perhaps he always will. But I now think the organism is a bacterial colony, rather than a strain of candida. Evidence for this theory will be presented later on. This microbial colony waxes and wanes, depending on the quantity and mix of carbohydrates in his diet and other factors. The formula is very complicated.
When you are counting carbohydrates, don't draw significant distinctions between real and artificial sugars. It's interesting that we have such a strong bias in favor of fruit, honey, maple, and other natural sources of sugar. Why should these be particularly safer than the sugar that comes from cane, and sits, granulated, in your sugar bowl? No reason really, but this is what we believe, and marketers have picked up on it. When I was young we ate Kelloggs Sugar Smacks. The same cereal is now called Honey Smacks, with just a trace of honey to justify the name change. Everywhere you look, honey and/or maple syrup is added to products and pasted into the name, to make you think it is more natural. But maple and sugar are both concentrated sucrose, and it doesn't really matter which you eat.
Fruit juice is another allegedly healthy form of sugar, but not for everyone. Whole fruit is usually ok, but juice is far too concentrated. You can easily drink the equivalent of 3 or 4 apples in one go, without the fiber and food bulk that promotes healthy digestion and regulates the flow of sugar into your blood stream. Yet we give our babies concentrated fruit juice within the first year of life. Following the trend set by honey and maple syrup, the food industry adds fruit juice to its products and declares them healthy. Yes, fresh cider from the mill is an annual autumnal treat, but not a healthy staple. Fruit juice can be almost as harmful as the equivalent amount of soda. Throw away the juicer; it's a bad idea.
The bathroom is another troublesome location, and over a period of several months I found that John's baths consistently aggravated his symptoms. Once again we consulted with the Feingold Association, which provides lists of safe hygiene products and cosmetics. We purchased hypo-allergenic soap and shampoo, but still the bath remained a problem. Finally I decided that environmental mold might be a factor. I removed the rugs, which act as ideal repositories for molds, dust mites, and volatile chemicals. I also kept the bathroom well ventilated and cut back on his play time - get washed and get out. These steps helped a great deal.
Many food-sensitive patients, and almost all candida patients, are sensitive to mold. John is no exception. Although the changes we made to his environment didn't produce an immediate or dramatic improvement, I believe they will prove their worth in the long run.
One night my Aunt took Kisha out for dinner as a special treat and inadvertently performed an experiment for us. Kisha ate grilled cheese and ice cream, a meal that contains yellow dyes in the cheese, preservatives and glutamates in the bread, artificial everything in the margarine, preservatives and gums in the ice cream, lactoes, caseinne, and sugar everywhere. The next morning Kisha could not write the numbers 1 to 20. She reflected some of the digits like a dyslexic, and writing a two-digit number was out of the question. We spent five minutes working on the number 16. She wrote 61, or reflected the 6, but couldn't write 16 - as though her hand had a mind of its own. We sent her off to school, though I'm not sure why. The next morning we asked her to perform the same task, and she whipped off all 20 numbers in a nice clean row and wondered why we were asking her to do such a silly thing.
With this compelling evidence in hand, We decided to skip the various drug regimens, which didn't work for John, and placed her on the Feingold diet as well. At first she resisted, but she really wanted to do well in school, and she saw some improvement in John's behavior, so she told us she was willing to give it a go. As parents we could have forced it on her, but I really wanted her voluntary cooperation. Classmates and friends are going to offer her treats and snacks for the rest of her life; this young girl has to muster the courage to "Just say no." This is much harder than resisting illicit drugs. Consider the following: The cupcakes that your friend brought to school for her birthday don't hurt anybody else. They are perfectly legal, and delicious. Everybody's eating them, but not you. Even though you have your own special snack, you're sticking out like a sore thumb in a world where conformance is the gold standard. To add insult to injury, one of your classmates taunts you in a loud voice. "You can't eat this cupcake, because it's not on your diet. I can eat it - it's delicious. Too bad you can't have it."
Kisha came home crying that day, and no doubt this scene will be repeated again and again. But she said NO, and brought the cupcake home for me to examine. I praised her for her courage, and gave her the best treat I could put together, consistent with her diet.
Although I like to think our positive reinforcements play a role, Kisha is probably holding fast to her diet because she sees the difference in school. She has already Aced three tests in subjects that she was struggling with before. When she got 100% on a geography quiz, her teacher praised her in front of the class, and she came home positively beaming. She would do almost anything to retain this position of excellence.
After this visit, we took John to a holistic practitioner to get a second opinion. I contacted the International Health Foundation, which maintains a list of some 800 doctors, which sounds like a lot until you divide it by 50. That leaves an average of 16 doctors per state. In our case most were on the other side of the state, and others did not treat children. Unless we wanted to accrue frequent flyer miles, there were only two doctors to choose from. Take a wild guess - do you think they are part of my health plan?
We took John to one doctor and Kisha to the other, and in both cases I was less than impressed. Then again, my expectations were probably unrealistic. My subconscious mind anticipated a set of definitive answers after a one hour visit: hidden food allergies unveiled, additives to avoid, and supplements to administer. Both doctors gave me an assortment of the latter, but they probably give the same pills to all their patients, generic vitamin/mineral supplements available at any healthfood store. So we really didn't get much out of these visits. "You're doing all the right things," he assured us, "just keep going." Apparently we had to keep chugging along, as we have done for the past year. Nobody is going to step in and provide a quick fix.
So what is teflon anyways? Teflon is a polymer whose base monomer is a rather nasty looking fluoro-carbon, just a couple steps away from freon. It's a wonder we don't all react to it.
Keep in mind, there are some ADHD children who react to aluminum ions, and they are better off using new teflon pans. If you want quick answers from this blog, you won't find them, because every child is unique. However, I can tell you to take your cookware into account, because it could be a contributing factor.
We now use enamel pans and glass baking dishes whenever possible. These are the safest vessels, introducing the fewest impurities into your food. At first we bought heavy expensive enamel cookware from Hudsons, for $100 a pan, only to find that the surfaces began to chip in just a couple months. We promptly returned these pans and ordered new light-weight durable pans for about $10 each. See the Miles Kimball catalog, 920-231-4886, item #465104. These have lasted for years.
NFF: John never had a problem with cookware. Once again we were pulling false, short-lived patterns out of random noise.
Since half the atoms in teflon are fluorine, we also looked at fluoride in general. We had been giving John bottled drinking water since he first arrived, but in August we began cooking with it as well, and we carried bottled water whenever we left the house. I also replaced his fluoride toothpaste with a homemade baking soda solution. Shortly after these changes I noticed a modest improvement, though we don't know whether fluoride is the culprit, or some other tap water impurity such as chlorine.
We have since exonerated fluoride and reissued his original toothpaste, and we're not afraid of tap water any more, though bottled water may taste better, depending on where you live.
For months I assumed he was just tired, at the end of a long day, which magnified his symptoms, but as he entered the first grade I began to think about it logically. He often got into trouble in bathrooms, even during the day. He deliberately stuffed wads of toilet paper into the toilets at home and at school. He spilled water, dabbled in hygiene products, washed the walls, got into cupboards, and so much more. As I told his teacher, "If he's singing in the bathroom, you're all right. But if he's quiet, something bad is happening." He isn't just tired; there is something about bathrooms. And no, it's not psychological. Don't go there.
I suspected an environmental agent such as mold or perfume or cleaners. But as the title of this section suggests, I was mistaken. It took nearly a year to figure it out, but it's obvious in retrospect. Mirrors magnify his hyperactivity. As he watches his reflection, a positive feedback loop ensues, and within seconds he loses all control. We covered the bathroom mirror with blank newsprint, and bedtime became much easier.
Now that I know what to look for, I'm amazed I didn't see it before. He is drawn to mirrors like a magnet. They don't usually drive him crazy, but he's always looking. If there isn't a mirror nearby, he'll look into a window, or even my wife's glasses - anything to catch his reflection. If there is any hyperactivity present, the visual feedback will magnify it ten fold. I asked his teacher to move him to a different desk at school, so he cannot see himself in the small mirror over the classroom sink. She thinks we're nuts, but hey, what else is new?
If you have an ADHD child, I recommend covering or removing any mirrors in the child's bathroom and bedroom. You might consider doing the same for the common rooms of your house. Don't forget to pull the shades at night, so he doesn't see himself in the windows. These steps might not help, but like a healthier diet, they won't do any harm.
I'm not sure if this qualifies as a particularly valuable insight, but it's interesting, and it explains why a 20th century classroom is the worst possible place for these children. John can't sit quietly and color a picture while 23 other kids color their pictures independently. Being ignored is, for him, a kind of pain that we cannot comprehend. There is no time to think about rules or consequences; the pain must end. Time to drum on the desk, or make a loud noise, or shout out something provocative, or run around the room, or flash the lights. Whatever it takes. There, that's better, now he's got everyone's attention. Some of the kids are even laughing at his antics, and that's the best. Uh-oh, here comes the teacher, and she's angry. He's in trouble again. Why does this always happen? There seems no way to avoid it.
Our neurological disorders are as interesting and as complex as the organ they afflict.
Q: How many ADHD kids does it take to change a light bulb?
A: Hey, let's go ride bikes!
We attended two parent-teacher conferences in the first week of March and came to the same conclusion about each child: "He/she hasn't behaved this badly in months." Because John is in special ed, we had a history of documentation to consult. "Precisely one year ago."I concluded. In March of 1999 we were taking him off meds and changing his diet, so there were too many variables involved. All we could do as parents and teachers was endure, with no explanation in sight. Fortunately he improved over the summer, and then in the fall he started doing a little better in school. Now it is March once again, and something is amiss. Kisha has also jumped the tracks, and she is on a different diet. Is there something in the air?
Throughout March I documented a negative correlation between scholastic performance and nasal congestion in both children. In fact,if John wakes up with a stuffy nose, I don't send him to school at all. He'd just be in time-out all day, and what's the point of that? We know that spring pollen can induce sneezing and watery eyes; might it also exacerbate neurological conditions such as AD[H]D? I decided the answer was yes, though I was hard-pressed to imagine why.
NFF: Spring pollen was probably not a significant factor. Certain foods caused his nasal congestion and his bad behavior simultaneously. The two symptoms were correlated by an underlying food chemical, hence his congestion served, and still serves today, as a harbinger of rising hyperactivity, although the former does not cause the latter, just as your alarm clock does not cause the sun to rise.
I will spare you the details of the additional steps we took, e.g. air purifiers etc, to protect John from the spring pollen, which was suppose to be causing so much trouble. These measures accomplished nothing, and I abandoned the underlying premise after a while. Fortunately I didn't spend more than a couple hundred dollars on this venture, but more time was lost.
Of course some children do react to their environment, quite apart from foods, so I really shouldn't chastise myself. Kisha in particular; 70% of her headaches are caused by allergies. So it was a reasonable hypothesis, it just didn't bring John down from the moon.
NFF: The failsafe diet is very high in carbohydrates, as it promotes rice, pasta, white potato, pears, and all the sugar you want. John could not handle all these carbohydrates. His micro-colony thrived, and dumped their toxins into his blood stream. This completely swamped the benefits, if any, of fewer amines and salicylates.
Much to his dismay, I put him back on a strict candida diet, as described in The Yeast Syndrome. His recovery was instantaneous and miraculous. The next day he was just fine, as though nothing had gone wrong. His teachers couldn't believe the difference, and neither could I. In the future we will have to be more careful about carbohydrates, especially simple sugars.
NFF: For two years John's microbial colony waxed and waned with no discernible pattern. No doubt the microbes were responding to the overall carbohydrate levels in his diet, and a dozen other variables that we were not tracking at the time.
A year ago this month I decided John had candida; now I claim he does not, and never did. I was always uneasy about this diagnosis, even though the candida diet helped. He never had any of the other candida symptoms. His immune system is strong, and he is healthy as a horse. He throws off colds and infections that send the rest of us running for antibiotics. It just didn't make sense. Were we on the wrong track?
John reacts to carbohydrates, both simple and complex. As I chugged down the candida track, with its low carb diet, I looked to my left and saw another track running parallel to ours. It is called fructose intolerance, wherein the patient, often for genetic reasons, cannot metabolize fructose (fruit sugar). No wonder he reacted so badly to fruit and fruit juices. And table sugar is half fructose, so that would explain a lot. I read everything I could on the subject, and reduced his fructose intake. If this was John's problem, it was very serious. The partial fructose metabolites can inflict permanent liver damage. We needed to confirm or deny this hypothesis quickly.
At the same time, the track to my right also beckoned. Perhaps John simply produced too much insulin in response to sugars. This would drive blood sugar below normal, forcing a state of hypoglycemia. This is known to produce hyperactivity in children. I tried to serve protein and carbohydrates together, in the correct ratio, as described in the book Enter The Zone. Yet the zone diet recommends fructose over glucose, since fructose enters the blood stream slowly and produces less of an insulin response. I couldn't accommodate all these theories simultaneously. Yet I had to do something; John was getting worse each week.
In fact his decline was frightening. Putting him on the strict candida diet bought us another two weeks of good behavior, but then that was not working. In an effort to keep blood sugar levels constant I started serving smaller meals more often, with fewer carbohydrates, and low fructose, and just the right balance of protein, and no synthetic additives, and no dairy. Try doing that eight times per day, cooking everything from scratch. It's exhausting. That bought us another week of good behavior, but then it wasn't enough either. Soon we were seeing reactions to small ten-carb meals, with protein, and without much fructose. Something was terribly wrong.
Soon another symptom appeared, adrenaline. Once or twice a day John had a racing heart after a mini-meal. He reported this to me, and I could feel it pounding through his chest. This was correlated with his bad behavior. In fact he was sometimes scared to death, curled up under a blanket, or consumed with rage, hitting and kicking everything and everyone in sight. This fight / flight response, and the racing heart, pointed to adrenaline. When the body is desperate for blood sugar it secretes adrenaline. This is only suppose to happen when the lion is chasing you. "We need blood sugar now, and lots of it, to run away or fight!" Nobody should have to endure a full-scale adrenal response two or three times a day. And of course John didn't know what to do with these feelings. I tried to tell him what was happening inside his body, and that there were no lions in the house, but his emotions trumped my logic.
The adrenaline finally sent us down another track. It wasn't candida, or fructose intolerance - it was an imbalance in his blood sugar regulation, and it was growing worse each week. Perhaps his pancreas was failing, or his liver. I scheduled an appointment with his pediatrician as soon as possible. As you recall, she was somewhat skeptical of the diet connection, but she was still an expert in other areas such as juvenile diabetes, and I needed her help. As it turns out she has a very open mind and will consider just about anything. As we talked on the phone she mentioned a couple possibilities. Like us, she thought fructose intolerance was unlikely. Either the liver was not functioning properly or the pancreas. A glucose tolerance test would confirm this. She also wanted to run a thyroid test, just to make sure. "If the thyroid isn't functioning properly, the patient can't metabolize sugars. We might be able to correct that with one little pill." Over the next couple days those tantalizing words rang in my head. Just imagine, one little pill, and John is all better.
The next night, as I was unable to sleep, I had another thought. Iodine. It's essential for proper thyroid function, and John has ingested almost none during the past year. We even served pure salt, because the iodized version contains corn starch, an additive that we weren't sure about. Besides, iodine was a variable that we'd never tracked before, so it was worth considering.
I started him on iodine supplements, and the next two days were much better. But by the third day the racing heart and the associated insanity returned with a vengeance, like something out of Edgar Allen Poe. Another blind alley, another week of precious time lost.
The Failsafe diet completely eliminated his adrenaline reactions. Or was it the reduction in carbohydrates? Hard to tell. John use to experience a racing heart with frightening behaviors three times a day, but these attacks disappeared under Failsafe, and have not returned since. He still suffers from ADHD, but at least the racing heart is gone.
In fact the first few days went so well, I let down my guard and gave him a boatload of carbs. Kisha's birthday, with ice cream all around, induced a violent reaction, so I decided dairy was a problem. I eliminated this, and John improved, until several servings of wheat, whence I concluded gluten was also a problem. Many Failsafe participants are either gluten free or dairy free or both, so I hadn't really jumped the tracks yet. But then he had several more bad days filled with lots of potatoes, so I thought potatoes were a problem. I removed these from his diet, and he was excellent, until he ate a heaping bowl of rice. Does he react to rice too? No - it must be the carbs.
I put him on 120 carbs per day, including rice and wheat and potatoes in moderation and in rotation, and he improved steadily over the next couple weeks. Before Failsafe, even 60 carbs per day was enough to induce antisocial behavior; now he could tolerate at least twice that level.
NFF: We were slowly beating back his microbial colony, while keeping him on a clean diet. Failsafe had nothing to do with it. However, I still don't understand his adrenalin reactions, what caused them, or why they went away. I'm writing this years later, with the benefit of hindsight, and I really don't have a clue.
Perhaps time was our enemy. The nearest Tyson plant is 1,000 miles from our home, and they ship their meats chilled, not frozen. It takes a few days to reach our local distributor, than a couple more days to reach our store, then another day or so on the shelf before we buy it, then a couple more days in the fridge before we cook it. Is that too long? Is John reacting to amines that build up in the meat? This was a new variable to consider; we never wrote down how long the meat sat in our fridge, or our local store, or the various distribution centers, or the trucks, or the slaughterhouse. Something else to explore.
Restaurants were another source of frustration. Why did John react to a restaurant meal one night and not another? It was exactly the same meal, prepared the same way, as far as we could tell. Yet it wasn't the same, because we never knew the age of the restaurant's inventory. Now we have a rule - don't take the kids out on a weekend. If he orders steak on Sunday night, it probably came in on Thursday or Friday. And how long did it take to get from point of origin to the restaurant? We'll never know, and the restaurant manager doesn't know either. Oddly enough a McDonalds burger is probably safer than a fine steak, because they move their inventory through faster, and the beef is always frozen in transit.
We began buying all our meat from a local butcher who promised us a maximum of 36 hours between slaughter and sale. This seemed to help both children. In particular, John had no trouble regulating his blood sugar. We served heaping bowls of rice, and other high starch foods, and he was fine. I wish I had a comparable quick-fix for restaurants, but I don't. I suppose we could order vegetarian dishes, but John would be hungry again in an hour, and Kisha doesn't eat many vegetables. Maybe McDonalds, without the condiments, is our best bet after all.
Although our children were doing better on average, they still had very bad days, and we didn't know why. One day, after a series of absolutely safe meals, John suddenly became violent and unmanageable. What did we do wrong this time? The stakes were from the new butcher, but we cooked them on the grill; maybe that creates too many amines? I checked with the amine sensitive folks on the Failsafe network; most of them can eat lightly grilled meat, so that probably isn't it. Nothing was wrong, yet John was bouncing off the walls. If these attacks continued without pattern or adumbration we could not send him to school. I hadn't been this depressed in years.
"You know," recalled my wife, "that butcher could barely speak English. I wonder if he really knew what I was asking him, or how important it is." We went to this butcher because he is just a few blocks from home, but I'd certainly be willing to drive across town to keep my children healthy. We made several calls and talked to five more butchers, who all spoke excellent English.
"Our meat sits about ten days at fridge temperatures before we sell it." replied the first butcher on the list.
"I can't really tell you for sure - too many distributors and suppliers in the chain." answered another honestly.
"You can get frozen meat shipped to your door." suggested a third.
We had already played the frozen meat game. A large retail seller of frozen steaks, which shall remain nameless, deliberately leaves its meat at 55 degrees F for 6 days, then freezes it and ships it all over the country. "That's where the flavor comes in." bubbles their sales rep enthusiastically. "That's what makes it tender." Gee, thanks alot.
The more calls I made the more discouraged I became. Nobody within twenty miles could sell us fresh meat.
Somehow my wife always comes through when I am at my lowest, and I generally reciprocate. That's part of a good marriage, and it's the best thing we've got going. "You know," she mused, "I remember a poultry shop in Rochester that sells free range chicken. It might be fresh. I don't see them here in the phone book, but I remember driving by the place." We called information and tracked them down - the Peacock Poultry Farm. I called the shop and spoke to a representative for 20 minutes, probably to the dismay of in-store customers. She was a wealth of information. She documented every step from slaughter to sale, and if we came on the day of delivery, the meat would be less than 24 hours old. And their meats are additive/hormone free. I was practically jumping out of my chair with excitement. On a whim I asked if they also carried turkey. "Oh yes." she replied. "Turkey and duck and beef and lamb and bear and buffalo and gator and ostridge and more." It's a poultry shop, but they have everything we need, and it's additive and amine free. "If I weren't married I'd ask you out." I declared.
Since a delivery arrived that morning, processed the night before, we went straight over and bought a little of everything. We ate it for the next week and saw no reactions. If this store wasn't here, I don't know what we'd do.
He still has incidents, but they are rare. He had one during the second week of school, hitting and kicking his teacher. This took place after eating fish that had been in our freezer for a week. Remember, we don't live near the coast, so the freshest fish we can buy is already churning out amines when it hits our store. An extra week in the freezer is too much, I guess. You have to be so careful with fish.
The improvements at home are just as dramatic, though his frustration level still drops when he becomes tired near the end of the day. We took the newspapers down off the bathroom mirror, as he seems to have no trouble getting himself ready for bed. His sisters are thrilled; it's hard to get ready in the morning without a mirror. Throughout the day the kids do what we ask, and nobody yells any more. Ok, we have to raise our voice to break the zombie spell cast by the TV, but that's not shouting in anger, and the kids know the difference. Not too long ago I feared John would never sit still to watch TV, so that's something new.
NFF: Kisha was truly on the mend, and has outgrown most of her food sensitivities. However, John's improvement was only temporary. Within a month he was as bad as ever, perhaps worse. I'm writing this several years later, and he's never been as good as he was that month. What was so great about that month? We still don't know.
NFF: Unfortunately the bad behaviors remained. What we smell on his breath is only part of the story.
I thought about the foods we had eaten over the past couple weeks, but nothing jumped out at me. As far as their diet was concerned, April looked just like March, which looked like February. I started to think about spring pollen, then deliberately pushed the thought from my mind. I reviewed the food journals again. Back in February I tested the kids on wheat, a little pasta every other day, and didn't see any reaction. I continued this through March and into April. Could this be a slow build-up? I'd read about this in books, but found it hard to believe. There was only one way to find out. I stopped serving wheat and saw no change for several days. But eventually Kisha's asthma subsided, and was completely gone in ten days. John's behavior also improved over the same period. Perhaps it was a build-down, coming off the wheat. If your child is having a reaction, it may not be the last meal, or even what he ate yesterday. It might be the aggregate of foods that were eaten during the past week. And once you eliminate the troublesome foods, you might not see an improvement for another week or two. Wow! If a food challenge can take a month, then we can only test a few foods per year. Where does that leave us?
We had brought in many new foods over the summer, with no obvious effects. However, we don't ask him to do much here at home. He plays well with his sisters, and with his friends down the street. That's a far cry from sitting quietly in a classroom and working on math, which is "hard", and "boring". Perhaps we need to get back to basics.
We cut back on salicylates and amines, and also eliminated gluten and dairy. John still looked terrible, and I thought sugar was to blame, so I took that out too. Then he seemed to react to rice. Here we go down the carbohydrate path again. Finally I saw a connection to white potatoes. I removed these, and he improved over night.
Looking back through my records, we gave John some form of potato almost every day. And when he went gluten free, potato was in everything we baked, either from a gf mix or from scratch. I thought the baked grains produced amines, and then I blamed eggs, then sugar, then carbohydrates in general - but it could be potato. I can't believe how long it takes to figure this stuff out.
NFF: There's nothing wrong with potatoes, except that it is a high carb, low fiber food that feeds the pathogen.
After several controlled experiments, I decided that his pure, whole grain bread brings on a reaction, while a white refined bread, loaded with preservatives, calms him down. So gluten is not the issue. What does this mean? What does whole grain bread have that white bread does not? What is in wheat germ/bran that is not in wheat starch?
One significant difference is lectins, a set of biologically active proteins that are prevalent in the husks and skins of most plants. I read the lectin story, and put John on a lectin free diet. This helped for a while. Then again, it seems like every change helps for a while, or else we are desperately searching for improvement. Needless to say, it didn't last. Soon his behaviors were as bad as ever, so we gave up on the lectin theory in short order. It was a good try; something we never looked at before.
Here's something else we never tracked: whether he ate his salad first or last, whether he ate that apple on an empty stomach, whether he went to bed immediately after dinner, how much oil/fat was in the potato chips, etc. All these factors are important in the ibs diet. Yet why should the ibs diet help someone with adhd, someone who has no overt digestive disorders? I had no clue, but we had to give this diet a try.
Let me pause for a moment and describe Wendy's IBS, which began 20 years before I started writing this journal. It exploded during her pregnancy, and became so bad that she could not leave the house. Her quality of life wasnear zero. Today we know it can be controlled with diet.
I'm going to describe two forms of IBS, A and B, with the understanding that Wendy does not fit completely into either camp. Type A is intrinsic. Your intestines have normal flora, but they react to things, oils mostly, and insoluble fiber, and seeds, and other things. See Eating For IBS for more details.
Type B is a bacterial imbalance. It can happen to anyone. It goes along with the high carb diet that we all eat here inthe the United States. When the bacteria get out of whack, they can cause any symptom in any person. My wife has explosive diarrhea, and my son goes insane. You never know what the mutated bugs are going to do.
So how does my wife fit into all this? I thought I understood Wendy's symptomology in 1995, shortly after her symptoms got so much worse, but I have since refined my theory just a bit. Yes, she has some of type A. Oils are very bad, but only vegetable oils. Dairy is ok. That's not typical, dairy is suppose to be bad for these folks. And insoluable fiber actually helps her, whereas it should cause trouble. So she's partly type A.
After a few years of really poor eating habits, lots of carbs, she developed type B as well. She would react to anything, any meal, didn't matter what. I couldn't see type A at all, because type B was in the way. She finally backed off on the carbs, and had 5 grams of fiber with each meal; and over a few months her bacteria returned to normal. Type B was cured. But she will always have to avoid vegetable oils and other fatty foods.
Ironically, starch is not as bad. Therefore it isn't a blood sugar regulation problem. White refined grains often have a higher glycemic index than fruit. In other words, grains dump sugar into the blood stream faster than an apple, and are more likely to cause an insulin spike. Yet he does better on rice and noodles. This became clear when we put him on the ibs diet, which promotes starch and restricts fruit. How can sugar be bad while starch is good? Especially since a starch molecule is merely a chain of sugar molecules strung together, and the first thing we do, in our intestines, is break that chain up into its sugar components. I don't get it.
Remember I was convinced John had candida, then I was sure he didn't. Well maybe he does after all. Parasitic yeast thrives on sugar, but does not do as well on starch. And remember that horrible breath, like fermented grain? That's a classic symptom of a candida infection.
Then again, all the yeast books tell you to avoid both sugar and starch. After all, starch turns into sugar in short order. One paragraph in the Crook-book says some patients tolerate starch, but other than that footnote, starch and sugar are both forbidden by the various candida diets. Yet John seems to tolerate starch in moderation. I don't get it.
If it's not candida, what is it? Well fungi aren't the only microbes out there. I began to suspect bacteria. Perhaps an unwelcome colony thrives on sugar, but doesn't metabolize starch as well. Remember, it's always a contest. I'm sure all forms of intestinal bacteria can make a living on starch, but if the good bacteria metabolize it more efficiently, they can out-compete the bad, and John's symptoms will abate. And what do the bad bacteria do? They probably dump toxins into the intestinal tract, and into the blood stream. I have no idea what kind of toxins are involved. Amines are a possibility. Some bacteria convert tyrosine into tyramine and histidine into histamine. I found an interesting paper that describes this process. Oddly enough, the researchers found a marked reduction in the presence of amines when starch was added to the mix. They don't speculate on why; they are merely reporting the outcome of their experiment. In their conclusion they state that amine synthesis by internal bacteria can be reduced by making simple changes in the diet, i.e. less protein and more starch.
We put John on a high starch low sugar low amine diet, and again, he is doing very well. We'll see how long this lasts.
Here is another important difference between starch and sugar. Starch is a polymer of glucose while sugar is a dimer of glucose+fructose. Maybe he is fructose intolerant after all. Remember I dismissed this theory a year ago, because it is usually a devastating illness that puts babies in the hospital the minute they drink their first glass of juice. Obviously John doesn't fit this profile. Still, it was hard to argue with the data. There may be new and undiscovered ways to react to fructose.
Here's another thought. Perhaps the fructose wasn't being absorbed through his intestines. He never had a chance to metabolize it, properly or improperly, because it never got into his blood stream. In that case, the fructose would feed the aforementioned microbes. I found an interesting page on candida, the first new idea regarding candida to come along in 25 years. It suggests that starch is often tolerated, and sometimes it helps the patient recover. Conversely, sugars are a problem because of their fructose content. This looks exactly like John, though I still think his unwelcome guests are bacteria, not fungi, for reasons that will be given later.
Mal-absorption and improper metabolism are two different things. Fructose intolerance is a metabolic, genetic disorder that probably would have made him deathly ill at a young age, as fructose intermediates built up in his liver. In contrast, fructose mal-absorption would simply pass sugar on to the colon, and lead to symptoms only when an opportunistic microbial colony took hold. This would depend on the nutrients eaten over the past few weeks, the type of colony, his reaction to their non-human byproducts, and the permeability of his intestinal walls to these molecules. The smell that was in his breath and on his skin was surely a cocktail of alcohols and aldehydes and ketones produced by the incomplete metabolism of sugar in an anaerobic environment. It was horrible, and so was his behavior. Methane and carbon dioxide are also produced, which is why John always had gas for no apparent reason. I use to think this was trivial, a rather petty thing for his teachers to worry about when compared to his serious problems, but now I think this symptom might be important. I check his stools, and sure enough, they are lose and mal-formed precisely when he is insane. On the good days his movements are perfect.
So why isn't fructose being absorbed into his blood stream? I haven't proven it, but I suspect it would be if it were free fructose. Free fructose is available at the healthfood store, but I haven't run this test yet. In all other settings, fructose is bound up with glucose to make sucrose, i.e. common table sugar. What if he lacks the enzyme needed to split this molecule in two? The enzyme is called sucrase, or invertase, and I'm sure he doesn't lack it completely, but he might not make enough of it, or it may be mal-formed, so that it doesn't cleave the molecule efficiently. Thus sucrose cannot be absorbed, at least not in large quantities, and it passes through to the colon where it feeds the bad microbes. This prompted me to do two things. I bought pure dextrose and started baking with that. (Dextrose is another name for glucose.) It doesn't matter whether he is fructose intolerant or invertase deficient, dextrose should be ok. He eats chains and chains of it in the form of starch, and he's fine. I also bought an enzyme supplement that contains invertase. I planned to serve this supplement, along with some pears, to see what happens. Pears are high in sucrose, and extremely low in salicylates and amines. It's a perfect test.
Returning to the world of scatology, most vegetables magnify his ADHD, especially the vegetables on the Failsafe diet, which are primarily cabbage and legumes. But those are the "gassy" vegetables, aren't they? They produce gas because they contain sugars that humans cannot digest. The sugars move on to the colon and are consumed by bacteria. This is slightly embarrassing for you and me, but it is devastating for John. If we give those microbes anything to eat, anything at all, the results are disastrous. (BTW, bacteria can digest these oligosaccharides, while yeast cannot; hence I suspect bacteria.) We needed another enzyme, alpha-galactosidase, capable of splitting these compounds. This enzyme is the main ingredient in the commercial product Beano. Unfortunately it is rarely found in a broad spectrum enzyme supplement. There are lots of other ases, probably some that we don't need, but it seems like this one is always missing. We may have to serve our invertase supplement with a sugar meal, and Beano with a vegetable meal. This is mostly speculation; we'll see where it leads.
We always wanted to test here at home, so he wouldn't get in trouble at school, but those tests are inconclusive. We have to test some items on a school night, despite the consequences, to see if he can function in school.
That's great news, because there are plenty of high-amine foods that are free of MSG, foods that are back on his safe list. He loves salmon, and that helps supply his omega fatty acids, which he may be missing. But the low MSG diet isn't a breeze either. We've been working diligently for almost four years, and we still can't find a safe bread or bun. We believe we have found a safe cereal, and a safe bagel, but we're not sure of that either. Something goes terribly wrong whenever baked goods are brought in.
The biggest problem with John and his diet is my inability to say no. He wants so much to go to restaurants, like everybody else, and that always gets us into trouble. The batter on the nuggets contains hydrolized protein and corn starch, soups and stews contain yeast or yeast extract, salad dressing contains vinegar, the steak is often seasoned with "spices", the bun on the burger contains malted flour, the pizza crust contains caseinate (Hungry Howies), the oil on the fries contains beef flavoring (McDonalds), the pad thai noodles have a fermented fish sauce, all chinese dishes contain soy sauce, the pancake batter contains buttermilk (Ihop), and on and on. I think we finally know how to cook for him at home, but when we're on the road there isn't much he can eat.
I can't believe these cookies are fermented the way bread is. There couldn't be any hidden amines or glutamates. In fact the most MSG-sensitive people on Earth can eat these cookies - I checked. Is there something else in these cookies, not listed on the package, or does wheat change chemically when it is baked?
In an effort to crack this conundrum we made our own oatmeal cookies using essentially the same ingredients. Pure as can be, plain and simple. The cookies baked for about 10 minutes. They didn't ferment; they didn't burn. I told him to eat plenty of cookies, and he happily obeyed. I wanted to know for sure whether baked wheat was a problem. Well I found out.
The next day I had to hold him down in his room for several hours, so he wouldn't trash the place or harm himself or others. He didn't threaten anything animate with the scissors, but I took them away just to be safe. This was probably the worst reaction I'd seen in four years.
"Is it big today?" I asked. For a brief moment he was able to step outside himself and answer my question. "Oh Daddy, it's huge!" Then he went back to crying and screaming.
If you've been following this story from the beginning you know that several years have elapsed. John is becoming a big strong boy. If we don't figure this out soon I won't be able to contain him.
All right, let's review. Gluten seems ok; he eats pasta and pancakes all the time. Dairy is ok; he eats some ice cream almost every day. Sugar is ok in moderation; homemade lemonade is his favorite drink. Either something happens to wheat when it exceeds the boiling point, or salt is a problem. We've known for a while that MSG is bad, but I always suspected the G, never the S.
At this point in the narrative you don't know John's race, because up to now I didn't think it was relevant. However, African Americans, as opposed to African Nationals, have trouble eliminating excess sodium. This is a lasting legacy of slavery, where unnatural selection favored black individuals who could retain salt despite great heat, dehydration, and deprivation. Now these survival genes find themselves at odds with our 20th century western diet, which is extremely high in salt. The black community is unusually susceptible to hypertension and stroke, and a low sodium diet is recommended for this segment of the population, and perhaps for the rest of us as well.
What if a small percentage of these African Americans have additional symptoms that result from an electrolyte imbalance? I've seen patients with improper sodium or potassium levels before; it isn't pretty. Symptoms can include rage, paranoia, hallucinations, depression, lethargy, you name it. So I wonder - is there a connection?
I did some math; the cookies that he ate contained about 1,300mg of sodium. That's a lot, but he usually does well on Aunt Jemima pancakes, which contain almost exactly the same ingredients with the same amount of sodium. We ran this test again, just to make sure. Six pancakes in the morning, containing over 1,000mg of sodium, and he's fine. Flour, oil, sugar, salt. What's the difference? It has to be the method of cooking. This is not unprecedented. Amine-sensitive individuals know very well that cooking methods can create amines. But I've talked to these folks; they can eat these cookies. Apparently baking produces some other chemical that drives my son insane. What could it be? There is no book I can read - no web site I can visit. This seems unknown to science.
Here is another data point. Baked sweet potatoes are fine, but if I slice them up and add a little oil, and bake them on a tray in the oven to make homemade fries, the demon returns. There's something about baked oils, something very bad. And all this is separate from his MSG sensitivity.
Unsaturated oils might oxidize under high heat, however, butter is highly saturated, and should stand up to baking. I don't know what went wrong with our cookies, but I guess we're going to keep him away from baked goods for a while.
Have you ever played the game Battleship? The homemade cookies were a hit, and there were only four ingredients: wheat/oats, sugar, butter, and salt. Four directions to guess: north south east and west. I'm sure you've gone all the way around your opponent's PT boat, splash splash splash, while he hammers away at your Carrier. Well it seems we've gone all the way around with his diet. We tried low salt, as described above; he only got worse. Then we tried no butter and low fat; no good. Next we tried gluten free, for the zillionth time; and he's even worse. The only thing left is sugar, and as if in confirmation, the strange breath is back. I haven't smelled that in a long time. Apparently candida, or something, has returned.
In retrospect, this is not surprising. We decided that fruit, by itself, was ok. In other words, natural salicylates are not an issue. So go ahead, Have all the fruit you want. It's healthy. It's good for you." Well it's even better for the opportunistic yeast.
Once the candida takes hold, you almost have to start back at square one. We put John on a low sugar diet, and I'm reading all those yeast books again.
What to do about starch? Some books claim carbs are carbs, and should be avoided altogether. Some books say starch is different, and doesn't really promote the growth of candida. A few articles say starch is good, and patients should eat some pasta in moderation. The idea is that the good bacteria utilize starch better, or faster, or more efficiently than the yeast, hence they out-compete the candida. Well that's the idea anyways. I don't know whom to believe, and I'm sure the answer depends on the particular strain of yeast, the remaining intestinal flora, the precise makeup of the diet, and the patient's immune system.
We're permitting a moderate amount of starch, simply because we have to. John would never tolerate the 100% meat and veggie diet that is the first line of defense against candida. He has to have his noodles and his chips. So on we go with low sugar, moderate starch, and low MSG.
Within a week or two I convinced myself that candida was not the problem; he's had too many good, high carb days. I mean there are days when he's had oatmeal and syrup, pasta, potatoes, sprite, ice cream, and so on, and he's been great. It just doesn't make sense. None of it makes any sense.
One thing's for sure, the homemade cookies were a disaster of unprecedented scope, and all those ingredients seem safe in other contexts. So once again I started looking at the chemistry of cooking.
The maillard reaction became my prime suspect. Protein and sugar combine, at high heat, to make an assortment of compounds not found in nature. John could be reacting to one or more of these compounds. To learn more, type "maillard reaction" into google and find hundreds of web sites. Here is a place to start.
Butter promotes the maillard reaction, and he's always had trouble with butter cookies. He also reacts to sliced sweet potatoes, but not baked sweet potatoes.
I added the previous section, on maillard reactions, to this blog, and within three days I received an interesting email from an objective reader who was able to weigh the evidence of my experiences without becoming emotionally involved. His letter is summarized below.
|Oh man, it's the sugar. You've gone around and around it for years. You've ruled out everything else. Seems like every three months you talk about carbohydrate reactions, and then you back away from it. You've read all the candida books, but you don't want to believe it. You've smelled the byproducts of candida on his breath and skin on three separate occasions spanning a period of two years. That's the smoking gun. Don't go off on yet another tangent looking at maillard compounds. You've been on enough tangents already.|
A candida patient can have a great day, a great week, even a great month on a high carb diet. Sometimes the yeast colony is held in check for reasons that we'll never know. And sometimes it explodes into a teeming infestation, whence even modest amounts of sugar can spell trouble. My evidence, good days here and there with lots of sugar, is circumstantial. Contrast this with the unequivocal fact of the fermentation products on his breath, so concentrated that even a human can smell them. My dog must think I'm an idiot. Case closed - court is adjourned. This does not mean candida is the one and only issue in John's past present and future, but with his headaches and asthma and nasal allergies cured by other dietary protocols, candida represents our last great battle, and it's as serious as any of his prior maladies.
Keep in mind, I've got advanced degrees in technical fields. I wrote, single-handedly, the Math Reference web site. I mean I'm very intelligent, and well grounded in the scientific method. So why do I have to have somebody else read my journal and render a diagnosis for me?
Apparently none of us are truly objective about ourselves or our children. We have too many desires, fears, and biases. Remember when I quoted Richard Feynman, saying science keeps us from fooling ourselves? Very true; but we all have to do it together, and watch each other, and correct each other's mistakes, and compensate for each other's biases.
So why am I so afraid of candida? Why do I run away from this conclusion every time? Why did I have to shoot all the way around the PT boat, saving sugar for last? Why can't I get past denial and bargaining, and jump straight to acceptance? The reason is probably obvious to you, the dispassionate reader, but I am just beginning to understand it. Only now has it been dragged from the dark recesses of my subconscious into the light of day. I'll do anything to avoid the candida diagnosis because I don't think John can follow the prescribed, ultra-low carb diet. I even said this much in the last section, did I not? Allow me to quote myself.
"We're permitting a moderate amount of starch, simply because we have to. John would never tolerate the 100% meat and veggie diet that is the first line of defense against candida. He has to have his noodles and his chips."
Well guess what. He can't. At least not for a while. The good news is, candida usually abates, and most people find they can eat more and more carbs, but only if they follow the low carb diet religiously for the first few months.
So now that I'm awake, and can smell the coffee, how can I keep John on 60 to 80 carbs per day? How?
There's something new in the 21st century, something that really pisses me off. It's the school system. They insist on serving snacks at mid morning, and snacks in mid afternoon. When I was a kid we ate lunch - that was it. After kindergarten we were done with naps and snacks, thank you very much. A diabetic girl in my class had scheduled snacks, and everyone else understood it was a medical thing. We didn't clamber and whine and complain, we just went through our school day. We ate lunch - lunch that we brought from home - that was it - that was enough. Well not any more.
In addition to these two scheduled school-day snacks, there are surprise treats when somebody has a birthday, and more treats for good behavior. If the class reads a certain number of books they all get a pizza party. If they do something else it's an ice cream social. What ever happened to stickers? This obsession with food makes my life, and John's life, ever more difficult. Follow along as I do some math.
Suppose John eats 80 carbs per day, amongst breakfast lunch and dinner, and perhaps a dessert. Well that's not too bad. Serve 20 carbs for breakfast, 20 for lunch, and 40 for dinner + dessert. If dinner is meat and vegetables, you might have room for some fruit, or maybe even a small pastry. Now let's solve the same problem with everybody grazing all day long. John has to eat 7 times a day: breakfast, morning snack, lunch, mid afternoon snack, home from school snack, dinner, and dessert. He can't skip any of these mini-meals because his classmates or his sisters are eating right next to him, and he's not strong enough to sit there and abstain. When others eat, he's hungry. I don't blame him - I'm the same way. So the breakdown is basically 10 carbs per event.
Lunch is almost manageable. He can take some meat and vegetables in his lunch box and heat them up in the microwave. But what kind of portable tasty snack can I give him that will compare favorably with the cupcakes and fruit and chips that everybody else is eating? I have to come up with two school snacks every day, and he doesn't particularly want the same snacks day after day.
As I write these words, I really can't think of a thing. Ok, I can think of one low-carb snack that he likes, fresh red pepper strips. And if I put a lid on the number of crackers, possibly crackers and cheese. Two snacks, that's it. That's all I can think of right now.
With all that said, I'm sure you understand why I would do anything, try anything, to avoid the candida diagnosis. It was all being done subconsciously, but it's plain as day if you read this blog from the beginning. I know what must be done, but I don't know if we can do it. We need a long list of tasty 10 carb meals and snacks, and right now I'm coming up with perhaps 7 meals and 2 snacks. Yes, I've read the menus in the various yeast books, but they're not very helpful. They assume you eat three meals a day and that's it. If only life were that easy. The only snack ideas in those pages are carrots and celery. Hello! John isn't going to eat celery sticks while his classmates eat cupcakes. Ain't gonna happen.
And what about the sodas? Sprite and 7-up are nearly failsafe, and very low in glutamates. Yet John reacts badly to these. I was blaming the sugar, and thinking about candida, but it could also be the phosphates. Soda contains phosphoric acid. Or it could be the benzoates??
In order to separate these two ideas, I deliberately tested the candida theory again. Two glasses of fresh-squeezed apple cider, baked beans, a peach, and a banana. What happened next day? He looked great, and he had a great day at school. Lots of carbs and another good day - I don't know.
Of course I'm not looking for a 100% psychotropic solution. He's got candida, and we've got to get rid of it. That has to be the number one priority. I wrote the following and gave it to the doctor, who was surprisingly open minded about the whole thing.
In the interest of fixing the problem, rather than treating it indefinitely,
we have observed the following correlations over the past two years.
This information may help us treat the symptoms more effectively now,
and ameliorate the symptoms in the future.
The following table presents symptoms as a function of carbohydrate intake,
either simple or complex.
The form of sugar doesn't seem to matter.
Even GFCF failsafe foods such as rice, potato, and pear produce the same symptoms.
The table begins with 120 carbs per day, because that's as low as John will go.
I wish we could explore 80 carbs per day,
but that seems impractical at this time.
120: Lack of focus, low frustration threshold, difficulty carrying out boring tasks such as household chores. A wonderful kid at home, plays well with friends down the street. Bright, interesting, engaging, imaginative.
160: Oppositional, especially at school when he is asked to do things that aren't precisely what he wants to do. Refuses to follow directions. Traditional ODD symptoms come in at this point. Still plays well with others, and is great with young children.
220: Extremely impulsive. Makes inappropriate noises and blurts out swear words, similar to Tourette's. Tries to clean the kitchen with an excess of soap and water; generally makes a mess. A touch of OCD. Absolutely no focus. Has to be the center of everyone's attention. At this point he is not functional, even in a home setting.
300: Violent fantasies, actively looks for things to break. Threatens people around him, though he doesn't act on these threats. Hyperactive, running about, can't sit still. Traditional ADHD symptoms come in. Has to be monitored at all times. Often has to be physically managed.
400: Self destructive behavior. Hits himself as hard as he can, and has to be restrained. He says simply, "I have to do it." This child, whom we never see unless we run the 400 experiment, would have to be institutionalized. We last ran this experiment on 08/18/2002, the oatmeal cookies.
120: No scent that I can detect.
160: A slight yeasty smell on his breath, if he breathes directly in my face.
220: I can smell the yeast and/or its metabolites if he is sitting next to me and talking towards me, or facing me.
300: The yeast is apparent, even one to two meters away. Someone else wouldn't recognize the smell, but they would know something was amiss. At this point some of the yeast products escape through his pores. I can smell it on his skin.
400: His entire bedroom is filled with the smell, like walking into a brewery.
The presence of gluten in the diet makes the smell, and the behaviors, somewhat worse. Symptoms normally associated with 300 carbs appear at 220, and so on.
Digestive disorders begin around 160 carbs, with excessive flatulence. This progresses to loose stools, and eventually diarrhea at 400 carbs. Nasal allergies kick in at 300 carbs.
The doctor prescribed an antifungal regimen to beat back the candida, and she recommended probiotics thereafter. She also talked to John about diet and moderation, especially when it comes to carbohydrates. In other words, "Your Dad isn't crazy, listen to him." Nice to have an authority figure back me up for a change.
She really hit the nail on the head when she said, simply, "He eats to much." We all eat too much, don't we? And if you eat too much food, you almost certainly eat too many carbohydrates. John has eaten adult portions since he was five, and maybe that's the problem. I'm afraid I don't set a good example. If the food tastes good I'm in line for seconds and thirds, whether I'm still hungry or not. Our ongoing diet has to be low carbs, and less food across the board.
We went on to discuss psychotropics. Two drugs seem promising. One is a reformulation of ritalin, and the other is wellbutrin, which is relatively new. We haven't started either of these yet, and I'm not sure which way to go. For now we're trying to evict the candida and see where that leaves us.
The day before new years John had a terrible reaction to a simple stir fry. This was a low carb meal, nothing but meat and vegetables. There were no sauces, and few spices. Granted, the dish had its share of salicylates and amines, but I think we've ruled those out. That's not the problem. So where does that leave us?
The vegetables, asparagus and broccoli and cabbage, are all high in oligosaccharides - sugars that no human can digest. I described these in an earlier section. These make their way to the colon and feed the microbe, in this case a bad microbe, which then dumps its toxins into the blood stream. Sure enough, the smell is back, resembling fermented grain. But this time he ate no grains, and not a lot of carbs. We have a portable ethanol meter, the kind used by drunk drivers, and it reads zero, no ethanol at all. But there's definitely something there; I can smell it from two meters away. I wish I had a mass spec.
I'm slowly starting to decipher the sugar connection. It doesn't matter how much sugar he eats; it only matters how much sugar reaches the colon. And oligosaccharides always reach the colon, every single gram. He shouldn't eat any of these, at least not yet. No wonder the failsafe diet was such a disaster. It is replete with wheat, oats, cabbage, brussel sprouts, rutabaga, and lots of legumes, a veritable cocktail of oligosaccharides. So I gave up on the failsafe diet and started counting carbs, but I was still serving lots of low-carb vegetables and legumes. These all contain non digestible oligosaccharides (NDOs), which pass straight to the colon and feed the bacteria.
I typed "oligosaccharides" into a search engine and found lots of articles, all promoting the health benefits of these compounds. NDO supplements are available everywhere, for humans and for livestock. These sugars usually promote the growth of good intestinal bacteria, which protect the host from various digestive disorders. I couldn't find a single article that suggested these sugars might feed an unwanted colony of bad bacteria. Nobody is talking about an NDO free diet.
While trolling through the Internet I stumbled upon a fascinating ndo symposium, and I wrote a quick email to the keynote speaker. To my surprise he replied right away, and was very interested in our story. I gave him a one-page summary, including a description of that strange smell. Here is his response. It is truly prophetic. You'll see, later on in this blog, that he is spot on.
|Candida doesn't usually smell like that. That's propionic or butyric acid. You're right, sugar is being mal-digested. His small intestine could be physically short, or he could be enzyme deficient. Any form of sugar that reaches the colon could spell trouble. I'm guessing the bacteria is Clostridium Defficile, or a close relative thereof. Don't try a GI antibiotic though; that could wipe out more friends than enemies and make things worse. Don't try a dairy probiotic either, such as yogert. If he is even a little bit lactose intolerant, which would not be unusual, the lactose sugar will pass to the colon and feed your unwanted guests. This will completely swamp the probiotic benefits of the yogert.|
Of course we had been giving him yogert all along.
We need to consider each sugar in turn. Pure glucose is probably ok. It is absorbed quickly and never gets to the colon. The same is probably true of fructose. If we ever return to baking we should use these simple sugars, available at healthfood stores, rather than table sugar.
Starch is broken down by amylase, and I don't think this is a big problem. Apparently he has enough amylase to go around. That's why he can eat rice and potatoes. But not wheat or oats; these are high in NDOs.
What about sucrose and lactose? These require invertase and lactase respectively, and he might be deficient in these. Too much sucrose, from natural fruit or from the sugar bowl, will exceed his digestive capacity, and the remainder moves on to the colon and feeds the bacteria. So we must continue to count carbs, at least the disaccharides.
As you can see, we are constructing a rather elaborate formula based upon the quantity and type of each carbohydrate. Other variables may also influence the rise and fall of his bacterial colony. No wonder it has taken us four years to get this far.
Within a day John was eating the same foods he ate before, and his stools were normal, but his behavior was off the scale. The simplest request would elicit an explosive tantrum. This continued for a week - maybe two. I don't believe his diet changed in any significant way after the flu, but something was amiss. He was reacting to everything. Dairy seemed to evoke nasal allergies, and we hadn't seen those symptoms in months.
I did some research and discovered that the flu, or any other form of intestinal distress, can strip away the enzymes that are needed for digestion. This is especially true of lactase, but it holds for all enzymes to varying degrees. It takes days, maybe weeks, to rebuild those enzymes. After the flu John was unable to digest his food completely, and the still unidentified pathogens thrived on the excess carbohydrates. In retrospect we should have cut back on carbs and avoided dairy for a couple weeks, giving him time to rebuild his store of enzymes. I didn't know any of this at the time. Of course he was eating cereal and milk almost every morning.
If nothing else, this episode demonstrates the undeniable colon-brain connection. If he isn't digesting his food properly, he's not the same boy.
I like to think of John as a tall skyscraper, and his disorder is a strong wind that tries to knock him over. Some days the breeze is light - on other days it is almost a hurricane. Most people think medication is an anchor that holds the building in place, but that's not how it works. Medication is a force that pushes back from the other side. This isn't entirely accurate either, but it's a little closer to the truth.
Meds are written to a particular prescription, a fixed force that pushes back on the building. If the wind varies from day to day, the meds will be woefully inadequate on some days, allowing the building to lean left. On other days the meds will be too strong, pushing the building to the right. As long as his symptoms vary from day to day, medication is not going to help. I've seen this in my home, and I've tried to explain it to his teachers at school. "We're not even going to try meds again," I declared, "until his symptoms have stabilized."
Guess what? He's stable. When John is on the antibacterial diet, a somewhat modified version of the anticandida diet, the wind blows at 25kph every day. We're ready to try meds again.
When we picked John up from his group home four years ago, his caregivers warned, "Don't try ritalin. It's a disaster. None of the drugs work, and we've tried them all, but ritalin is the worst."
Well we did try ritalin, and some days it helped, but some days he became autistic. It was horrible. We've never seen these symptoms before or since. When the wind is blowing hard, ritalin deflects the building, so that it falls in a different direction. He becomes autistic instead of insane. I'm not sure which is worse.
Yet somehow I always felt ritalin would help. I thought it was the right drug. So we decided to try it again. His doctor prescribed a time-release 20mg tablet, which is a pretty low dose for someone who is almost as tall as me. I gave him the first pill on Sunday and didn't really see any change at all. So we gave him the second pill on Monday and sent him off to school. That afternoon we got a call from his long-suffering teacher.
"If I were younger I'd be doing cartwheels. In the past year and a half, I've never seen him look this good. He's doing work that I thought was simply beyond him." She continued to sing his praises for the rest of the week. This is clearly the best school week he's ever had. Maybe ritalin is a wonder drug after all.
"Wait a minute?" I hear you cry. "Aren't you dead set against ritalin?"
Well - I try not to think in terms of black and white. I try to keep an open mind. I saw Dr. Crook, the Dr. Crook, on TV the other day. He's 85 and sharp as a tack. The host asked him about ritalin, and he responded this way.
"If you need ritalin, or some other medication, then take it. But you don't want to take it, day after day, year after year, without searching for the underlying cause. I mean, suppose you got a headache every night. You wouldn't suffer in silence, you'd take something for it, right? But if it happens every night, you and your doctor would want to know why. I don't understand why doctors don't take the same attitude towards ADHD. But they don't. They just throw up their hands and prescribe ritalin year after year."
I believe we will cure John's disorder eventually, but in the meantime we have a drug that will help, with virtually no side-effects, and it would be irresponsible not to use it.
John remembers when he was on asthma medication. He knows he needed it to breathe, and he also knows he doesn't need it any more. The same is true of Kisha. In addition, Kisha use to get headaches three or four times a week. We gave her tyenol as needed, and there's nothing wrong with that, but she doesn't need it any more. I'm taking the same approach with ritalin. He needs it, and it helps, so we're going to use it. At the same time, I will continue to treat his disorder with diet, and probiotics, and anything else that makes sense, and perhaps someday the winds will cease, and he won't need this medication any more.
Even when she is well she isn't really well. She often wakes up with a stomach ache or head ache. She lies around in front of the tube, then wants McDonalds for lunch. Of course she's all better by 3:00, ready to go out and play. The psychologists would have a field day with this one.
"It may be subconscious - she's creating the problem herself. You see that don't you? She just wants to be with you, or maybe something is bothering her at school. Have you talked to her about this?"
Actually we haven't, because the problem is not in her head. She really does wake up ill, especially on Monday morning, and it can take most of the day for her to recover.
Her emotions are out of whack too. It's subtle, and you might not notice it from afar, but little things make her sad, or frustrated, or both. She wasn't like this before. She was always a happy girl, one of the happiest kids I know.
Here's another piece of the puzzle. Beth is clearing her throat a lot lately. She's done this before, a couple years ago, but then it went away. At the time I attributed it to MSG. She was eating frozen dinners with MSG almost every day, and when she got tired of them, and stopped eating them, her symptoms went away. Well - the clog is back, and it's very distracting to those around her, especially at school.
I know from experience that constant throat clearing is a classic reaction to food or food additives. Apparently Beth has joined the rest of us mere mortals. Welcome aboard; looks like we all react to something.
Beth would like to stay above the fray, eating anything she likes, but last Saturday made that impossible. Her reaction was so severe she could hardly breathe. We need to figure this out quicly.
John and Kisha are almost gloating. For four years they've watched Beth eat pizza and candy and pop, while they ate boiled chicken and green beans and rice. For four years Beth has gone to friends' houses without a care in the world - no special food arrangements, no uncomfortable situations. For four years Beth has gone on field trips with her class and eaten, well, whatever. McDonalds, KFC, Taco Bell - whatever. This was a constant source of frustration for John and Kisha. Don't get me wrong; these three are about as close as any siblings I've ever known. You'd swear they were raised together from birth. They play together, and help each other, and care about each other. But there is always going to be tension when one can do anything she likes while the others are severely restricted. Now it seems the shoe is on the other foot.
Trouble is, we don't know what Beth reacts to, at least not yet. We're starting from scratch. Fortunately I've learned a valuable lesson over the past four years: natural foods cause more allergies than manmade additives, on average. I'm not going to worry about red#40, and I'm not going to count carbohydrates, at least not yet. We're going to cut out wheat, corn, or dairy, and see what happens.
As I start work on Beth's diet I have another advantage; I know her genetic history. This puts us half way around the board. "Advance token to Illinois Ave." I react to corn, and she might too. She ate a truck load of corn last Saturday, and is still clearing her throat three days later, so let's go with that. Yes, she also ate wheat and dairy and soy, and lots of additives, but I still think it's the corn.
24 hours into her new diet, and Beth is frustrated to tears. She only likes a handful of foods, if you can call them foods, and they all contain pretty much everything. I told her that this was an easy diet, especially compared to the regimens that John and Kisha have endured, but that didn't cut any ice. She wants her six comfort foods, over and over again, and she doesn't want to start reading ingredient lists. I don't blame her, but that doesn't change the hand she's been dealt. She needs to be on a diet, starting today, and there's very little room for compromise. I just hope corn is the answer. I don't want to take on another four-year project.
Well here we go again. After a few tests, corn seems to be ok, so let's eliminate soy. Unfortunately soy is in everything, and Beth is a very picky eater. She only likes three homemade meals and five restaurant meals. I'm not talking steak and potatoes; I'm talking chicken strips and fries, pizza, onion rings, etc, all swimming in soy oil. That's what she craves, and if she doesn't get it the tears flow. She just doesn't like anything else.
I'm not going to be able to prove or disprove this theory until summer. The school lunches have too many variables. Every lunch has some soy, either a little or a lot. There's no way to know. She won't eat anything cold, like a sandwich, and the prepared foods she might take and heat up in the school microwave all contain soy - sometimes a little, sometimes a lot. There's know way to know. So for now I'm letting her eat most of the school lunches, and I'm trying to keep her off of soy at home. She still clears her throat and coughs, but less than before. She wakes up well every morning and hasn't missed a day of school. No strep, no head aches, no stomach aches.
If soy is the culprit, and if her sensitivity gets any worse, she may not be able to eat the school lunches at all. This is ironic, since John and Kisha have started eating the school lunches again. There are a few lunches with too many legumes or carbs, but most lunches can be squeezed into our carbohydrate budget, especially if John skips the cooky or breadstick or whatever. After four difficult years of packing lunches for John and Kisha, we may wind up packing lunches for Beth. You never know where this story will lead.
These drugs were totally ineffective, or should I say inadequate, when John ate a typical western diet, so we're not surprised when he begins to escalate. We get a call from school one morning asking if we remembered his medication, as John bounces around the classroom. We reply in the affirmative, and his teacher is surprised. Fortunately John straightens himself up and has a good day, but this is the beginning of a downwardl spiral. By the end of the week he is in time-out, a place he hasn't been since December. His teacher calls again. He is quite concerned, as he should be. John has definitely not had a good week at school. The teacher also makes his recommendation. Now pause for a moment and try to predict - what did the teacher suggest?
"I think you need to increase his medication. You said he was on a low dose. I don't think it's working any more."
I wanted to tell him about John's diet, about the carbohydrate connection. I wanted to tell him we expected this, and that his recent bad behavior could perhaps be put back in the box. I wanted to explain it all, but I decided it was pointless, like telling him I was going to pray to Zeus. So I told him I'd call the doctor and see what we could do about increasing John's meds. But I think the dose is fine; we simply need to return to the diet that works, the diet we've spend four years sculpting by hand out of the hardest marble.
My wife Wendy is overweight, and it's been getting worse during the past 5 years. We've been so busy taking care of our kids, we forgot to take care of ourselves.
Wendy's aunt Sara died last year at a relatively young age. Sara was diabetic most of her adult life, yet she ate sugar with reckless abandon. "I just take more insulin to make up for it." she quipped. Ten years ago she developed diabetic neuropathy, a horrible, painful condition. Other complications soon followed, and we were almost relieved when Sara was finally at peace and pain free.
I mention this because Wendy has a quarter of Sara's genes. She also has half her mother's genes, another lifetime diabetic with burgeoning neuropathy. Her grandfather also suffered from neuropathy. If Wendy doesn't lose weight, her future is preordained, and it isn't pretty.
A nearby hospital has a weightloss program, and Wendy attends the introductory meeting. They recommend a liquid diet - no food at all. You just drink their shakes morning noon and night, and pay $500 a month, assuming our insurance won't cover any of it, and it probably won't. Well Wendy would give it a go, and I'd certainly spend the money, if it would work, and if it was the only way. But I've been studying diets for ten years, and I think there are other options. Three, to be precise.
A) The Zone diet. This has a high success rate, but requires careful planning and tracking. Restaurants are out of the question, and we all love to go out to eat. No - we need a diet that is compatible with at least some restaurants. We just don't have time to cook everything from scratch and count carbs, proteins, and fats.
B) Low carb - about 80 per day. Wendy likes this one because she gets an occasional piece of toast or chocolate, if it fits within her carb budget. But it still requires careful planning, and it's very easy to fall off the slippery slope, especially at a restaurant. "Well that looks like a cup of potatoes, I think. How many carbs are in a cup of potatoes? I don't remember. … Let me taste that dressing. That doesn't taste too sweet. I don't think it has much sugar in it. I'll just put a little on my salad." So much for plan B.
C) No starches, grains, or processed foods. Wendy eats meat, fish, fruit, and vegetables, in their original forms. There's no slippery slope here; the diet is well defined. And it is almost restaurant compatible.
D) The hospital-monitered liquid diet. Wendy doesn't think she can drink prescribed shakes morning noon and night while all around her are eating real food. And she has to go back to food eventually, so why not skip the middle step?
On May 1st, Wendy begins her new diet, which is a radical departure from her former eating habits. The kids hardly notice, because she doesn't whine and complain - but it is a very difficult regimen. It's certainly more restrictive than John's diet, and I'm going to mention this the next time he complains about his lot in life.
I hope diet (C) works for Wendy, because we really don't want to move on to (D).
Suppose the engine of your car is just a little bit off. It sputters and pops once in a while, but it mostly works. There are three things to keep in mind.
The car isn't getting all the energy out of its gasoline. Some of the fuel is being wasted because the engine isn't very efficient. So you have to fill up the tank more often.
The fuel that is partially burned goes out the tailpipe as exhaust. It looks like smoke coming out the back. You'd never pass the EPA emissions test.
When the car runs fast, the engine produces lots of smoke, and doesn't run well at all. This is not a good situation. The car will get you where you need to go, but it's not built for drag-racing.
John's metabolism is the car engine, and food is his fuel. Something causes his engine to misfire. Translation of the above points:
You're hungry a lot, and you eat more than most kids.
The smoke, in this case strange microbial byproducts, spills into your brain and makes you crazy.
The more you eat, the crazier you get.
I spent a summer in Africa, and I paid close attention to their diet. They ate lean meat (mostly goat and chicken), boiled grains (corn and sorghum), a few vegetables, and some fruit imported from South Africa as a treat. They drank water, tea, and not much else. The adults drank a homemade beer made from fermented grains, but only in small quantities, because it was somewhat labor intensive to produce. You'll notice there aren't any artificials, and I use to think this was key. Well I don't think so any more. You could add red#40 and BHT to their diet, and I'm sure a few kids would react, but not many. The salient difference between the African diet and the western diet is the concentration of the fuel. We pack more energy into a Hostess cupcake than an entire African lunch. And we don't eat our fruits any more, we drink them in the form of juice. It's easy to gulp down the equivalent of three or four apples in one glass of cider, and we feed it to our kids. Then we get older and we drink soda, more concentrated sugar. Have you ever tasted raw sugar cane right off the stalk? I have, when I was in Hawaii. Yuck! It's a long way from this fiberous stalk to the sugar bowl.
The 5000 year old Ice Man, discovered at the Italy Austria border, ate some wild grains, but this is a far cry from flour. Wheat, rice, corn - it doesn't matter the grain - they're all concentrated starches.
Fats are also concentrated. Everything is fried in oils, but where in nature do you find a bottle of oil - even a "healthy" unsaturated oil? You don't.
All our foods are concentrated, an we are not equipped to handle this. There may be thousands of kids in Africa with John's disorder, and they have no idea anything is amiss. These genetic variations were not particularly detrimental until we started concentrating our foods. Is this why 7 million Americans are now on ritalin? I wonder.
Perhaps most of us don't have colonies of foreign microbes in our guts, yet we all suffer the effects of macro-nutrient magnification. Sugars → diabetes/obesity, oils → cardio-vascular, wheat/dairy/corn/soy → various sensitivities and allergies, and even salt → hypertension. We'd better start eating real foods, in their original forms.
She spent two weeks doing some research, lining up a series of tests that she thought would shed some light on the subject. She prescribed them all in one go, so that the lab tech could draw blood just once. It's a good thing too - John was hysterical with fear. Wendy and the tech had to hold him down while she filled 11 vials with blood. Some of these tests had to be sent to the Mayo Clinic, so we had to sit back and wait. Meantime I could run a few tests of my own.
One night John had the strange breath again, and he was aggressive and defiant and irrational and hyperactive, and all the behaviors that go along with. This time I was prepared. We bought some ketos test sticks from the local drugstore. We took out a fresh stick, exposed it to John's urine, and - nothing. No glucose, no acetoacetic acid. So that's not it. This is not a derailed Krebb's cycle, as I suspected earlier. No ketone body in the urine. And once again no ethanol, as per our portable meter. What could it be?
A week goes by, and John tells me it really hurts when he urinates. Now this is the proof I've been looking for. I mean, young boys don't usually get bladder infections. It has to be the bacteria inside, spilling out into his urine. Nobody believes my bacterial theory, but now I have proof. I capture the urine in a container and put it in the fridge. The next day we take it into the doctors. Well not quite - we have to make an appointment and take John too, even though he's been in thrice in the last month. Doctors have their idiotic protocol, and you just can't change it. So we sit in the waiting room and wait - then we see the doctor. She checks the urine that we obtained last night. PH is normal, and no bacteria. "No problem here." she declares with a smile.
Something is terribly wrong with my son, something that will eventually kill him if it isn't corrected, and there is no lab test that can confirm it or diagnose it. I go home more depressed than I've been in a long time.
I tell him I want to check his breath, and he pulls the blanket down, sits up, and gives me a perfect H, right in my face. Then he flops back down and covers up again. I ask him to put 3 fingers up and he does. This is no seizure. He's in there, but he's afraid, and he can't speak, although he seems to have all of his gross motor skills. I ask him what he wants to do next and he finds my dymo tape labeler. He turns the wheel to L and shows me the L. I acknowledge it, and he then moves it to U. Then N and C … he wants lunch. Breakfast was a long time ago; he's hungry. And he obviously found a way to communicate. Guess I'd better teach him the sign alphabet, in case this happens again.
I suggest a few things we might have for lunch, and suddenly he says, "Wow, I can talk again. I just broke through a red glass wall." His speech was back, as though it had never left. A part of me was, and is, fascinated. We talked about his experience for a while. He says he remembers the same thing four years ago, but I doubt it. I think he remembers me talking about it. In any case, it hasn't happened in the past four years, until today, and its never happened at school. That's what I really wanted to know. He's been on ritalin for most of the past 7 months, and this is the only occurrence in that time. The other three occurrences, four years ago, also involved ritalin, so ritalin is a necessary ingredient, but certainly not sufficient. I go over yesterday's menu, and he did eat something very unusual, a generous helping of barbecue potato chips. Normally we try to stay away from artificials, but lately I've almost given up. "Oh what the hell, nothing works, so go ahead, eat anything you like." The chips contain MSG, and autolyzed yeast (more glutamates), and smoke flavoring (whatever that is). I think there is a ritalin MSG interaction, at least in John's brain, which leads to fear and a complete loss of speech. This does not mean John is glutamate sensitive; it only suggests a drug/MSG interaction. I may test this theory, someday, but for the next few months I think we'd better stay away from glutamates, because you never know when he's going to need his ritalin.
As it happens, we ran another test a week later, somewhat by accident. He ate more glutamates, and the next day he said he saw the glass wall. "It wasn't as thick, so I could break through it." he reported. John had no ritalin that day. So it seems that glutamates are bad on their own, and should be avoided. When combined with ritalin, they are a disaster.
The blood tests haven't told us anything, although some are still pending. Meantime John is getting worse by the day. I can smell that mysterious chemical almost every night. I decide to change his diet once again. That compound can only be produced by a bacteria living in his digestive tract, so I insist on at least 5 grams of fiber with each meal. This is part of the protocol that really helped my wife's ibs. I know, this is a major departure from earlier theories, but what else can I do?
I keep going back to stale beer; that's the key. I return to google, and discover some articles on light struck beer, where the hops interaacts with light to produce mercaptans, chemicals which are also employed by our friend the skunk. These are short hydrocarbon chains with an SH, rather than an OH, at the end. Crotyl Mercaptan is definitely on the list.
So what causes mercaptans in a human? Lots of protein containing sulfur amino acids, and not enough water. It could be a harmless form of bad breath, but remember, I smelled the mercaptans on his skin. Not often, but I did once or twice. This is not the onion/garlic smell that sometimes ekes out of my pores, but the mercaptan of stale beer. It isn't oral bacteria, not simply bad breath; the chemical is in his blood stream, and probably in his brain. It's being made somewhere else, somewhere inside. There is a bacteria somewhere, and if we feed it cysteine and methionine, it produces mercaptans. If we feed it anything else, it still creates toxins that resemble or derail neurotransmitters, though the sulfurous smell might not accompany. Where does this bacteria live, and why can't we see it? Must we starve it into submission, or can we kill it with an antibiotic? I don't know. One thing's sure; only a bacteria can make that smell. A human, even a genetically flawed human, lacks the necessary enzymes. We are indeed chasing a microbe.
Ok, some of the tests are back, and the amino acids are off. Three of them are too high, and three are too low. This is trying to tell us something, but what?
There are three possible outcomes.
I was betting on #1, while the doctor was sure it was #2. In fact we playfully had a large pizza riding on the outcome. Well nobody has to pay up, because it was #3. He got much worse. We had to pick him up from school, kicking and screaming, two days in a row, and the smell was back, stronger than ever, although it was different, in a subtle way; purer, as though some components were missing. Our microbe is either a strain of yeast, or it is a bacteria that can evade or resist the antibiotic, and it is now multiplying freely, with all its competitors wiped away. I stopped the antibiotic halfway through the prescribed regimen. Yes, I can hear you crying out, especially you doctors, "Never stop an antibiotic after just four days." But hey, you don't have to live with the fallout.
During one of his terrible episodes we rushed him to the doctor. "What's that smell?" she asked. He didn't have to breathe in her face; it was apparent from across the room. This is what I wanted her to see. She wrote a script and we ran off to the hospital for a blood test. A few days later the results came back. The PH is low, and the smell is butyric acid. Not a ketone, not a mercaptan, but an organic acid. This is, as you will recall from an earlier section, exactly what a bacterial expert predicted from halfway around the world, based solely on my subjective descriptions. Course there may be other odoriferous, volatile compounds that they weren't screening for, but butyric acid is definitely one of them.
More searching brought me to the specific carbohydrate diet, abbreviated SCD, which admits simple sugars, but avoids starches completely. This diet has been in existence for 45 years, but only now is it growing in popularity. The autism community has discovered it, and in some cases it is more effective than their GF CF diet. I decided to give it a whirl. Sorry John, but we're changing your diet again. Actually, we can't change everything overnight, so we're simply taking the first step, a reduction, and eventual elimination, of sucrose. No cane sugar (and all its variants), no corn syrup, and no maple syrup. He had so much maple when we were trying to avoid cane, and it turns out that's no better; it's just another form of sucrose. Honey is the preferred sweetener on SCD, and we've never tried that before.
Well the reduction of sucrose seems to help a lot. This is about the tenth time I've proclaimed progress, only to recant three weeks later, so I'll bide my time and reserve judgment. I'll let you know in a couple months. For now, it looks like the reduction in sucrose is helping. I wish I could eliminate it completely, but he insists on eating most of the school lunches. Sigh.
Next child. "Beth is bright, but so sad and preoccupied. Is there something going on at home? She talks about John hitting and hurting her Mom. I think she needs to see a therapist to talk through all these issues."
And John, well, that's always the worst meeting of all. The conclusion is usually "No progress, no improvement. Although John is bright, he's falling further behind; years behind in almost every subject. And his anger will get him into serious trouble if we don't get a handle on it soon." What are they going to say today? More of the same?
John's special ed teacher opens with a question. "I was wondering if you changed his medication about a month ago? He's not been in time out for the past month, even once, and he use to be in the time out room every day. We've had no tantrums, no meltdowns. He's going to all his specials, gym art etc, and he can even be with the regular class for science and reading. Not every day, but maybe 50% of the time he can go to the general ed room for science. He's really very proud of that." The teacher looks through his logs. "It started about 5 weeks ago."
I explain about the blood test, and the butyric acid, and the yeast/bacteria that live in a protective biofilm in his intestines. These microbes are impervious to drugs; diet is our only recourse. Five weeks ago we eliminated sucrose. That was the first step.
They must think I'm nuts. They've thought so for the past five years. But now, finally, it's hard to argue with success. I tell them we will probably implement SCD 100% next semester, and we'll see what happens. We walk out of his school smiling, for the first time.
And it's not always John. Take Thanksgiving for example. We went to Wendy's brother's house for turkey dinner, and when we came home a $350 cell phone was missing. Each of my kids saw it in different places, and Beth says she saw John playing with it. Of course nobody actually touched it, or so they claim. Since they are all pathological liars, with an act that would impress Ronald Reagan, I don't know whom to believe. We learned later that Kisha took the cell phone and hid it in her room, for reasons that still escape me. Unfortunately they bought a new cell phone in the interim, and now I have to reimburse them, even though I currently don't have a job. No paycheck, no income, and our savings are dropping fast. So glad all those tax cuts for the rich are stimulating the economy. Thanks a lot, George W. Bush. No worries though; my children will pay for these growing deficits with interest. Hey, who needs a balanced budget anyways? That's just so Clintonian. But I digress.
Yesterday John ate a restaurant lunch that we would not sanction on his new diet, but it was already prearranged. He earned lunch out for his good behavior. Honestly, that's how schools reward kids these days, with snacks and treats, and even trips to a restaurant. It's all about food food food. No wonder our kids are obese and diabetic. So yesterday he ate Thai noodles, a huge plate of starch and sugar. Now it's the day after, and we're ready for the fallout. Or are we?
The morning begins with John crying, because he found an "I hate you" note on his bed. Guess what? None of my kids wrote it. Liars every one! I have Beth write a quick letter of apology, because I'm pretty sure she's the one who did it, and we remind her that she's suppose to talk to us about her feelings, even her negative feelings, instead of sending hate mail to her brother. Finally everyone settles down, and we send them off to school.
We hope to spend some time with each other before the kids come home, and we're almost in the mood, when we get a call from school. Kisha has stolen something, and is sequestered in the office. Wendy puts on her coat and heads out the door. What really happened, and what is an appropriate punishment? No, I don't think my angel daughter was framed. She's stolen before, e.g. the cell phone, and apparently she's stealing again. Christ, I thought we were past this.
Meantime John comes home and he looks terrible. "How was your day?" I ask, and he says it was "Gwate!", with his thumb in his mouth. Well this time he's not lying. He continues to have pretty good days at school now that he's off sucrose, but he has become a monster here at home. This reaches a crescendo at 10:00 at night, when Wendy asks him to pick his toys up off his bedroom floor. A simple thing, just pick up your trucks, but his ODD is off the scale tonight. He insults her in every way possible, and tells her that she should really go to jail for treating him so badly. Then he throws his possessions about. Once again Wendy is in her room crying. It's just a bad day.
There is one bright spot though. At the end of the day, John says, "I don't want to be crazy any more. I don't want to be mean any more. It's not fair." He is becoming self-aware, and has almost hit bottom. This may be what we've been waiting for. Perhaps now he will follow the SCD diet. Perhaps he will decide that his life is more important than eating what everybody else eats. It's really his choice you know, not mine. And at this moment in time, he says he'll give SCD a go.
The next morning we pack his lunch, a plain pork chop, squash noodles, and peas. Yeah, it doesn't sound terribly appetizing to me either, but that's all we have ready made that is consistent with SCD. So he picks up his lunch box and puts on his coat, but why is he going out through the garage? Wendy and I sit quietly and listen; he's getting into something. She opens the door just as he is dumping his lunch into the garbage can. Apparently he was going to buy lunch like usual, and come home with an empty lunch box. Well planned and well executed. Unfortunately this is the beginning of his carefully crafted lies, which will grow in scope and complexity throughout the years. We reel him in and the fight begins. We tell him he can't go to school if he's going to lie to us and eat the school lunches. Now he is kicking and screaming. We pull his shoes off in a hurry. Unfortunately his new winter coat gets ripped in the process, and I can't afford to buy him another one. He'll have to wear his old beat-up coat from last year, which really doesn't fit. Finally he calms down as his ritalin kicks in, and we take him to school. We explain that he'll be bringing his lunch until further notice, so if he's standing in line to buy, something is terribly wrong.
I don't know where all this will lead. I have a blood test that points, unambiguously, to a chronic microbial infection, and I have a diet that might help. It's partial implementation has made a difference at school, so there is reason for optimism. But I don't know if he can stick to it, and I don't know when we can expect an improvement in behavior here at home. Soon I hope, but some autistic kids are on this diet for weeks or even months, 100%, no mistakes, before they turn the corner.
Just before Christmas we receive some happy news, my job has returned, with a steady paycheck. One less thing to worry about. Our relief is palpable. We have more patience with the kids, and more hope, and more joy. To top things off, Christmas day is a true delight. John looks good, really good, all day, with no meds. Just a good day, just lucky I guess, but I'm glad it landed on Christmas day.
It's obvious in retrospect, but the same thing happens with sound. He loves microphones and speakers; always has. He will turn up the volume until the house rattles. I use to attribute this to ego and self importance, and that may be part of it, but it is also another form of positive feedback. He hears his own voice and it gets him going.
The other day John was out on the driveway with a portable amplifier, talking to the neighborhood in general. He spotted one of our neighbors out on the porch for a smoke. With John's amplified voice circling back into his brain, his fascination with smoking, the police, and all things taboo took control. "Drop that cigarette and come out with your hands up." Now this is not going to win friends and influence people. Wendy jumped up from her work, ran outside, and reeled him back into the house.
John usually receives high praise from the neighbors. "He plays so well with our kids. … He's such a nice boy. … So smart, and not a bit shy. … So polite." Putting an adult under arrest for smoking hardly seems consistent with this behavior. When John calms down I talk to him about positive feedback, and mirrors, and microphones, and I ask if he would have said anything like that to an adult without a microphone in his hand. He thinks for a moment, and then says no. He knows I'm right. We need to avoid self-feedback in all its forms.
In early March John kicked a second hole in the wall of his bedroom, and we just couldn't see how he could function at camp, eating institutional food. Perhaps we could prepare all his meals ahead of time, a week's worth of three squares and snacks, but we didn't have the complete answer either. Camp was only two months away, and we didn't have a clue.
Back in January his pediatrician said, "If he can handle milk, it will help heal his intestines and rebuild the proper microbial colonies. You might want to give it a try."
During January and February we gave him a glass of milk from time to time, and the results were mixed. Sometimes there was no reaction, and sometimes he went crazy. I couldn't tell, so I decided to run the real test. Starting in mid March I told him to drink a carton of milk every day at lunch. Even if he brought his own lunch, he could still buy milk for a quarter. Within a couple weeks I could see a change. He wasn't cured, and he wasn't a whole lot better, but the wild variations were gone. It almost didn't matter what he ate. He still reacted to sugar, but starch seemed to be ok. He went back to eating rice, and potatoes, and even wheat in moderation, and he never went insane. He still had ADHD, and a pretty low frustration threshold, but he wasn't running around the house shouting "Bam! Bam! Bam!"
Sometimes on the weekends John would forget to drink milk, and by Sunday evening he was sliding back into his old self; something none of us wanted to see. So I offered cereal for breakfast, especially on the weekends, to keep his milk consumption up. Cereal is the last thing you should eat if you're trying to starve a carb-loving intestinal microbe into submission, but the benefits of milk seemed to outweigh the cost of the grain.
Week after week, at home and at school, John was reaching a stable equilibrium. He still had a plethora of symptoms, and he still needed his straterra, but each day was pretty much like another, and he could eat almost any meal he wanted to, and even an occasional sweet treat.
With new-found hope, we sent him off to camp. He ate spaghetti, pizza, lasagna, mashed potatoes, pancakes sans syrup, and just about everything else on the menu, and - pause for dramatic emphasis here - he was ok. Not great, but ok. You can't see it, but I'm sitting here shaking my head in disbelief. It was only a year ago that we tested spaghetti. The sauce was homemade - no sugar added. And the meat was pure ground turkey - no MSG or preservatives. So we were only testing wheat / starch. The next day was Mothersday, and it was one of the worst days we've ever had. John ran out of the house and all around the neighborhood. Nobody could catch him. He tore Wendy's flowers out of the front yard and stomped on them, then he tried to knock over the mailbox. Wendy spent most of that mothersday crying, and the girls were crying too. It was horrible. Now he eats institutional spaghetti, which probably has sugar in the sauce, and he's ok. What to make of this, and where to go from here?
I made another appointment with his doctor, but oops, my employer has changed insurance out from under me, and now his doctor, who has worked with us for the past five years, is not part of the plan. Isn't that sick!? The saddest aspect of the United States, domestically, is our Laissez-faire approach to healthcare. We need universal health insurance, and we need it today. At a minimum, health insurance should be disentangled from employment. My boss doesn't pay for my car insurance, or my home insurance; why should he be involved in my healthcare? Why should I lose coverage if I lose my job? It makes no sense. Instead, the government should provide healthcare for its citizenry, the way it provides a public education. Good health benefits society as a whole, just like education. That's fucking obvious, isn't it?
Besides being a good investment, it is a moral imperitive. A person shouldn't go blind just because she can't afford an operation. And yet, my beautiful wife will find herself in precisely this situation in just a few short years. That's coming up later in this blog, but for now we have coverage, and we are fortunate indeed.
Thanks to Medicaid, we can retain continuity in John's care. As part of the special needs adoption program, John receives Medicaid coverage until he is 18, and his doctor accepts Medicaid. So we can continue to work together to treat his medical conditions. The girls will have to change doctors though, and there's nothing I can do about that. Well - at least they get to see a doctor.
At the same time, my wife Wendy suffered from debilitating ibs for over a decade. She was so ill that she could not leave the house. It took me five years to come up with a treatment for her, based on fiber, carbs, and oils, and another five years after she was well to realize why this helped. We were finally feeding the good bacteria and starving the bad. Ten years later, we still have to watch her sugar and her oils.
Now, here are two people in my family who are genetically unrelated, and have no background in common. They lived in separate states for their entire lives, up to the point that they became ill. What are the odds that both of these people should suffer from a microbial imbalance?
That's probability; here is some statistics. Given that this has happened, how many people in the United States suffer from this problem and don't realize it? My family is of course too small a sample to answer that question, but it suggests a huge, undiagnosed epidemic.
Why has it gone unnoticed?
Because medicine tends to group people together by symptoms. We put all the people with a common set of symptoms in a room, look at all their data, and ask, "What do they have in common? Why have they all jumped the tracks?" We don't group people with completely unrelated symptoms together. Nobody would put Wendy and John together and search for a common cause. And so, I believe we are entering the 21st century with a great deal of ill-health, caused by an agent that is not recognized by modern medicine, or even alternative medicine. Yes, much has been written about candida, but that's just the tip of the iceberg. Bacteria is the real problem, and there are millions of species to choose from, each producing its own unique blend of toxins. Combine this with the patient's unpredictable sensitivities and predispositions, and anything is possible. Allergies, arthritis, emotional imbalance, hives, infertility, I don't know, anything. And so we just can't seem to put the puzzle together. I hope, by writing this blog, I can make people more aware.
Why is bacteria a problem for so many Americans?
Because of our 20th century diet. In the 1700's our ancestors in England ate 7.5 pounds of sugar a year. Today in the United States we consume 20 times as much, 150 pounds a year. You don't need a Ph.D. in biology to know that evolution can't keep up. Mammals have spent the last 50 million years drinking milk, and so, the bacteria that thrive on milk and live in our intestines have become our friends, in a simbiotic relationship that benefits everyone. In contrast, the bacteria that feed on sucrose are strangers to us. They make us ill in a thousand different ways.
Why do we love sugar so?
Ultra-sweet substances taste good to us because the occasional stash of honey that we pillaged from a hive gave us a real boost, and that only happened a couple times a year, so no harm done. It tastes like fruit, only better. Evolution had no reason to throttle our desires, because none of our ancestors was able to knock over a hive every day. Biology could not anticipate cans of soda at the ready. Now we eat 7 ounces of sucrose every day. Take your sugar bowl down from the shelf and measure it out. It's a lot.
The disorder wrought by our western diet is so subtle, and produces such a variety of symptoms, that we can't see it or understand it. Meantime teachers hand out candy as a reward, and pop machines line the hallways of our schools. What are the odds that the next generation is going to be very ill? Pretty good I'd say, unless something changes.
On Sunday I joined him in some ice cream, and both of our bowls were larger than prudence would dictate. Still, I love ice cream, and so does he. Maybe we'd get away with it. Well we didn't. Monday was horrible, and despite eating no sugar on that day, Tuesday was only a little better. By Wednesday John was almost back to normal.
Now fast forward a week. We are out running errands and the girls want to stop at Dario. Can John have a cone from Dario? I have reason to fear, but I authorize a small cone, and I pick one up for myself. "That's a lot of ice cream." I remark as I take my first bite. "Maybe we should have ordered the baby cone." But I stop and hold it in my hand. It's light. If I filled the same cone with Breyers, it would be heavy. All the books say to eat natural, and avoid artificials. If this is your prescription, Breyers is your best bet. It's unusual to see a Breyers container with more than five ingredients, and the stuff is darn good. But that's not John. He doesn't react to the artificials. Gums, oils, dyes, fillers; they don't bother him, at least not in moderation. Sugar is the problem, and perhaps starch, because it feeds the bad bacteria. Natural ice cream is dense, and has twice as much sugar by volume as soft serve.
I went home and did some math. The last bowl that put John over the top had 80 carbs. That's the equivalent of drinking three cans of coke. No wonder he was a wreck the next day. There are some things that milk and fiber just can't fix. I explained this to him, and not for the first time I had to recant an earlier position. When he eats ice cream, which would not be very often, it will be soft serve, with half the sugar.
We don't think much about John's disorder over the labor day weekend. We go to parties, visit friends, and have a good time. John avoids sugar of course, but he eats plenty of starch in the form of noodles and pizza and so forth.
Tuesday morning we get a call. "I guess he's excited about the events of the weekend; is there something you do to settle him down?" My heart drops through the floor, because there is nothing we can do, nothing anybody can do to settle him down. He has regressed. He is once again unmanageable, and cannot function in his special ed program, much less a general classroom. In the afternoon we get another call. They suggest we come pick him up from school. This scenario is repeated on Wednesday, Thursday, and Friday. Friday is the worst. He is singing songs about drugs, which sends the school into fits. John comes home and I can smell the chemicals on his breath. That hasn't happened in a long time.
Have you seen the voltage characteristics of a transister? Nonlinear - just like John's microbial colony. It remains small unless you give it just enough food, and then it explodes. And once it is big, you have to cut way back, way way back, to bring it down again.
I decide to try the SCD diet again, which we flirted with before. This is the one that avoids polysacharides. This time we're going to get serious. This time we're going to kill the microbes that are slowly killing my son. I decide to do the diet with him for solidarity.
Do you know how this diet begins? Plain meates, eggs, cheese, and grape juice. That's it. Within two days we move to the next stage, which brings in cooked fruits. Are we moving too quickly? Perhaps, but we can't live on protein and grape juice any longer. So a new week dawns, and we're slogging through a very restricted diet. John doesn't cheat, at least I don't think he does, who knows? In any case, he's not getting any better. This week is as bad as the last. By rights he should come to me and say, "Dad, you're full of shit. This diet doesn't work, and I'm going to eat anything I damn well please." He should, but he doesn't. He keeps trusting me, with the faith of a child. Meantime I'm opening the book and thinking, "This diet is full of shit." Course they have an answer for this. "It's die off … behaviors will get worse before they get better … some improve after two weeks on the diet; others take months." Isn't that convenient? Isn't that special? I'm suppose to keep John home from school and leave our family in tatters for months, because the diet just might take that long to perform a miracle. And if this isn't the right diet, well, what's another three months after he's already lost twelve years of his life? I'll figure it out eventually, and try something else.
No - this is lunacy! John changes by the day - sometimes by the hour. We've seen it. If this diet is any good, it should be working by now.
Suddenly it hits me; an epiphany. The book, and the members on the mailing list, keep stressing 100% compliance. Even the smallest trace of sucrose or starch can set you back. But fruit is ok. Is fruit devoid of sucrose? Is an apple 100% glucose and fructose, without the slightest trace of sucrose? I don't believe it. I call up google and find this website. An apple is 30% sucrose. What gives? I pose this question to the list and nobody knows the answer.
If a diet forbids even small amounts of most of the natural foods on Earth, then it is an extreme diet. A year ago our pediatrician said she didn't like extreme diets, because even if they were healthy, long term compliance was impossible. Setting this aside, there is a larger issue. Extreme diets are penny wise and pound foolish. You eschew hundreds of healthy foods, and cook the remaining foods in certain ways, to avoid this chemical or that, like someone with a serious case of OCD; meantime you are ingesting that very chemical in large quantities. The failsafe diet tries to avoid all salicylates, but if you eat any fruits or vegetables at all, you're going to get salicylates. And trying to avoid amines, while eating large cuts of steak, well I never did understand that one. Now I am swimming in yet another extreme diet. Don't let a trace of sugar cane enter your lips, because sucrose feeds the bad bacteria, but pay no attention to the 8 grams of sucrose in that apple. That's ok. Penny wise, pound foolish.
Extreme diets also make you paranoid. "Oh my God, he ate a potato chip, we'll have to go back and start all over again."
I can't put John through another extreme diet. I can't put myself through another extreme diet. I won't do it. Fool me once, shame on you; fool me twice, shame on me.
Meantime my son is still looking to me for answers. What are we going to do? The microbial infection is real. I can smell the volatiles on his breath, and we have the blood test to prove it. So what are we going to do? I think the best bet is the 50 year old advice from Dr. Truss. Eat approximately 80 carbs a day. That's the diet. That's it. It's not extreme. An extra potato chip won't matter. I don't have to worry about trace amounts of this or that, and I don't have to scrutinize labels like a member of CSI.
I make an appointment with a pediatric GI specialist. It's time to talk to someone who really understands this stuff. Remember the movie Lorenzo's Oil? The boy's father listened to everybody. Crackpot theories, established research, unproven hypotheses, everything. Then he was smart enough to figure it out for himself. Well I need to hear a couple more opinions, and then I better figure it out, because time is running out. If John isn't well by next month, I don't think he'll be looking to me for answers any more.
And what does the GI specialist have to say? Same old crap.
"I've seen many people use diet to affect behavior. It usually doesn't work. … All I'm really interested in is his digestive symptoms. … Well we all naturally have some yeast and bacteria in our intestines. It's hard to know what to do if we can't isolate a particular pathogen. … No - I have no idea where the butyric acid comes from, but I don't think it could cause all the behavioral symptoms you describe. Probably nothing to worry about. … I suppose you could try a probiotic."
Well that was helpful. NOT! Looks like I'm on my own.
We cut back on carbs, holding at about 80 per day, and after two weeks, two long weeks, John improved, and can function in school again. He's been staying in school ever since, but his disorder is not gone, not by a long shot. It's just a little easier to manage.
His saliva test is normal.
I couldn't find any strains of yeast, through an internet search, that produce butyric acid.
In contrast I found lots of strains of bacteria that make butyric acid, including butyrivibrio, which is named precisely because it makes this compound. This bacteria lives in the rumin of cows and sheep, and should not be found in humans.
Butyric acid is actually somewhat toxic to yeast. Not as much as octenoic or decenoic acid, the standard antifungal supplements, but still pretty toxic. If his system is so full of butyric acid that I can smell it across the room, I don't believe candida could survive.
Mercaptans are also produced by bacteria, not yeast, nor are they intermediates in any human cycle. I can smell mercaptans in some situations.
Ten years of candida would surely produce leaky gut syndrome, and he'd have all sorts of food sensitivities by now; he seems to have none.
My wife had a batch of symptoms that was completely different, yet we found, eventually, that it was caused by an intestinal bacteria that just wouldn't go away.
So it's a bacterial colony. That's bad news, because I can't buy an antibacterial supplement over the counter. I have to get a prescription, and all the doctors and specialists think I'm nuts. Well it's not clear that an antibiotic would help in any case, it didn't before. Other than cutting back on carbs, and perhaps nondigestible sugars, it's just not clear how to proceed.
My daughter developed an aggressive form of strep, and it's not unusual - not unprecedented - to treat all the siblings with an antibiotic. We select one that will kill strep, yes, but is also effective against intestinal bacteria. And this time we run the full seven days. Are you ready? Drumroll please. Nothing. Sure, it cleared up Beth's strep, but it had no effect, good or bad, on John. So the inconsistencies continue.
John's symptoms exhibit a huge variance - they respond to food in longterm patterns - there is no metabolic disorder - his blood contains nonhuman chemicals - the food carb correlation is undeniable - it has no response to antifungals or antibiotics. What does that leave? Here's another idea - worms.
If you live in Michigan you know Randy Tent. Even if you're not in Michigan you may have heard of him. He's the greatest naturopath in the world, and if you're not sure, just ask him. That's all right; why should doctors have a monopoly on ego? We take John to see him, and he diagnoses a calcium deficiency and worms. But he doesn't sit still long enough to explain what he means by worms. He hands me an expensive supplement and dashes out of the room. He dashes in later to evade some of my questions in a manner that would make a politician proud, then he dances out again. The man has serious ADHD, yet we're bringing John in for treatment for ADHD. Oh well, we're desperate. So what does he mean by worms? Surely any macroscopic parasite would have been seen in all the stool samples we've taken over the years.
I read the label on the box of pills that he sold me, and everything ends in ase. It's a broad spectrum enzyme supplement. It won't do any harm, but it won't kill any worms either. I discount his diagnosis and move on. But I wonder … are there patients who do not completely digest their food, whence the undigested nutrients feed an unwelcome microbial colony, which produces an array of unexplainable symptoms; then the patient takes Randy's supplement and starts to improve, having no idea why. I wonder if this happens, because a lot of people around here sing his praises. A lot of patients have gotten nowhere with modern medicine, and flock to him. Might he be right at times, quite by accident? I wonder. Enzyme underproduction, leading to undigested nutrients, leading to an opportunistic infection, is certainly a cascade we have considered before, and not implausible.
At the same time I receive email from one of my loyal readers, suggesting a protozoan. If it wasn't one of the well known strains like giardia it could go unnoticed, and would be resistant to all the treatments we've endured thus far. Have a look at this website, and this one. The latter suggests that protozoa actually eat, and thrive on, the good bacteria in probiotics, hence probiotics can make the patient worse. You need to grow your own good bacteria. You can't call for reenforcements. And the only way to grow your own good guys is fiber. I keep coming back to fiber. It saved my wife's life, and if I can get the formula right it could help my son as well.
Of course we've tried high fiber diets before. With my wife's history, fiber is one of the first things I tried. But there are subtle differences between individuals. My wife didn't mind the oligosaccharides that are present in most high fiber foods; but my son can't tolerate them. In other words, his pathogenic microbes thrive on the complex sugars present in legumes and leafy vegetables. Perhaps this was not the case with the bacteria that colonized my wife. Each microorganism is different, and the treatment varies accordingly. We need to look to whole grains for our fiber, setting most legumes and vegetables aside. I put John on a low sugar, low oligo, whole grain, high fiber diet. It seems to be helping, but I've said those words before, so time will tell.
Speaking of chairs, at this point I must pull out my chair and whip and beat back the psychologists in the crowd. "Back, back! It's not psychological. It's not all in her head. She likes school. Don't you guys get it?"
Well they've got a hammer, and everything looks like a nail. I suppose I'm guilty of the same thing. I watch her slog through her illness, and then come out of it about noon, as though she had purged something from her system. She jumps back into school and salvages the second half of her day. Then she comes home happy as a clam and plays with her friend down the street. Now I'm ready to swing my hammer, and I hope I'm not pounding on a screw. "It's something she eats." I declare.
I've written about Beth before, her incessant throat clearing and her frequent ear infections. Have we crossed a threshold? Does the offending agent now cause dizziness and fainting? I don't know, but I think this is more plausible than the default diagnosis of vasovagal syncope, for which there is no clear evidence and no unambiguous test.
Oh the junk she ate on Friday - pizza and McDonalds and the like. And she was fine all weekend. What could she have eaten Sunday that would cause this reaction on Monday morning? I really don't know, so I'm guessing it's corn, because I reacted badly to corn, and she has half my genes, and she had no corn on Friday or Saturday, and a large helping of corn on Sunday. That's not a great rationale, but it will have to do for now. I decide to keep her off corn for a while, and see where it leads.
We go to Florida for our annual vacation, and Beth is fine. She's not dizzy even once, despite the coasters and spinners at Cyprus Gardens. I took corn away and she's fine. It looks like I was right on the mark.
NFF: Her fainting was caused by an infection that lingered for several weeks. Once the infection was gone, she ate corn again and nothing happened. I really do swing my diet hammer at everything. Most of Beth's problems are chronic low level infections that never go away, and most of Kisha's problems are induced, or aggravated, by outdoor allergins. And yet food may still play a supporting role. A healthier diet would probably reduce the frequency and severity of their infections and allergies, and all the concomitant symptoms that go along with.
Read the aforementioned article, and you'll see that iron plays a pivotal role. This is something else the SCD folks have understood for decades. Perhaps this is why John reacts to his low sugar, high fiber cereal; it is fortified with iron. I decide to go searching, once again, for the perfect cereal. It has to be low sugar, high fiber, whole grain, no added iron, not too many artificials, and it has to taste good. "Is that all Captain, we have five days you know." [Miri]
I believe the bug that infests my son is a genetic mutant of the natural bacteria that live in your colon and mine. They look the same, and under a microscope a lab tech might say, "Those are the normal bacteria that help you digest your food; you can ignore them." But if you could read their dna you'd find they are not normal. Something is different about them.
See the March 19 2005 issue of Science News. Intestinal bacteria can coat themselves with sugar to evade the immune system. This is normally a good thing. A simbiotic organism, which has been helping us for tens of millions of years, has surely found a way to hide from our immune system. But when that organism mutates in a high sugar environment, and becomes our enemy, we have no way to fight it. You may wonder about antibiotics, and we've tried that twice, but remember that an antibiotic never kills the entire pathogen. It attrits their numbers, and your immune system is suppose to mop up the rest. Taking enough antibiotic to kill every last bug isn't practical. So the mutated gut bacteria simply rebounds after the course is over, along with its cohort in crime, candida. Combine this with the ability to hide in a biofilm, and there seems to be no answer to this problem.
A friend of mine, in a similar situation, is considering a flora transplant, like rebooting Windows after it has gone astray. I need to do some more research on this. It sounds a little extreme, but it may be the only way.
Put your evolutionary hat on and think for a moment. If bacteria are immersed in a high carb environment, created by a western diet, some may develop the ability to harm the intestines in a way that prevents us from digesting starch and complex sugars. The undigested sugars feed the bacteria, and the cycle continues. The bugs have found a way to open the refigerator door. I believe this is the underlying scenario, and once the bacteria mutate and grow, it's hard to starve them out. It makes evolutionary sense, but is it right? I don't know.
The barrier is not a physical structure. I mean, the brain isn't wrapped up in a plastic bag. Instead, the barrier is implemented in the walls of the blood vessels that traverse the brain. They are functionally different from the arteries and veins that nourish the rest of the body. It's an imperfect analogy, but the holes are smaller. The brain is a fragile organ, and it must be protected. Even the lowly fruitfly has a blood brain barrier, though it is structurally different from ours.
Jack Samuels, an expert in glutamate sensitivity, offers a compelling theory. Perhaps John's blood brain barrier is just a bit leaky. It still blocks the macro molecules that would kill a person outright if they entered the brain, but it allows some of the smaller molecules through. These include glutamates, and other impurities found in 20th century food. This genetic variation would have been harmless just a century ago. There has been no evolutionary pressure to oppose it. So we should not be surprised to find that some of our children react, behaviorally, emotionally, or mentally to these novel compounds.
Finally, Jack offers a ray of hope. In some cases children outgrow some of their sensitivities as they enter puberty. Perhaps the blood brain barrier completes its development as we reach adulthood. Continuing our imperfect analogy, perhaps the holes tighten up. I dare not count on this, but it would be wonderful if true! John can look me straight in the nose as he approaches his teenage years. Manhood is just around the corner. We will continue to watch his diet; but someday, if we're lucky, we can lift some of these restrictions.
On his worst days, when the chemicals are finally leaving his system, and he reflects upon his actions and their consequences, he sometimes talks about suicide. He has done so almost since he came to our house at age 6. But the next day he has a positive attitude, and is ready to play with friends or enjoy a family outing. I have never seen a child with more resilience. Naturally we watch him closely while he has his dark thoughts. My brother committed suicide when I was a teenager, so I am aware of the issues and the ramifications, but I also know John's feelings are a natural response to a truly rotten day in a long line of rotten days, and if we can string a few good days together he'll feel better again. An antidepressant may be necessary in the short run, but he also needs me to solve his underlying problem, and soon.
One day, after a bad episode at school and another one at home, John offered his analysis of death.
"Death is peaceful, like closing your eyes, like when you go to sleep. There aren't any angels, or devils. There is no God. It's all a myth. It's just peaceful."
I have been careful to hide my atheism from my children, because I don't think young kids can handle mortality, any more than you would tell a 2-year-old there is no Santa Clause. So he didn't get these thoughts from me. In fact, he and his sisters go to church on Sunday morning, and group on Sunday evening, when John's condition permits. I have allowed others to tell him all about God, and angels, and heaven, without revealing my feelings on the subject. Yet somehow he has figured it out.
NFF: John will become deeply religious around age 21, and thank God, for that is often the only force strong enough to pull someone away from drugs.
John did something at school that was not terribly dangerous, but is nonetheless a suspendable offense. Since you can be suspended now adays for bringing cough drops to school, or having a nail file in your purse, or complimenting your classmate on her pretty hair, this isn't saying a whole lot. And the specifics aren't important in any case. The point is, I knew he was staying home the next day, so why not run an experiment? I gave him some prepackaged potatoes with a few additives, and we basted the chicken in a thin barbecue sauce. I had confidence in the menu. The barbecue sauce only contributes 2 or 3 grams of sucrose. Everything should be fine - but the next morning disaster struck.
By mid morning I had to restrain him, physically. He has already thrown his metal die-cast car against the wall, shattering it into pieces. Wendy takes the laptop and all other valuables out of his room, then retreats into her bedroom to cry. This scene is all to familiar in our house. I would cry too, but I don't have time. I have to keep my wits about me, to control a boy who is almost as big as I am, and I must do it without the benefit of sight. This is not for the faint of heart.
When John settles down on his bed exhausted I review our little experiment and its tragic outcome. Was I wrong? I spent at least 4 of the past 7 years proving his diet is not microscopic. A bite of this or that doesn't matter. Trace amounts of additives don't matter. Even the problem compounds such as sucrose are tolerated in small amounts. He does not have to be on an extreme diet. Now the foundation of my theory is crumbling beneath me. To make matters worse, I can smell the butyric acid on his breath. I haven't smelled that in over a year, since we cut back on sugar/carbs. Where do we go from here?
John says he has to go to the bathroom, so I carefully escort him out of his room and across the hall. After he is done he goes over to the sink to wash his hands, and the mirror sends him into overdrive. He grabs the liquid soap and is about to spread it all over the room. I snatch it away from him just in time, and drag him out of the bathroom and back into his bedroom. Now he is frantic. With escalating OCD, he insists on washing his hands. "I'm diwty!" he declares, without the r. I tell him that he cannot go back into the bathroom with that giant mirror, nor can I leave him alone long enough to cover it. "Now if you had a blindfold," I suggest, "like the ostriches." He knows exactly what I am talking about. Last week we watched an episode of Dirty Jobs, where Mike was loading ostriges into a truck for transport. You must first blindfold these birds, or they will panic, and you'll be kicked by a frightened, 400 pound beast. This is a common theme throughout the animal kingdom. If they can't see what's happening, they are much calmer. He pulls a shirt off the floor and wraps it around his eyes. This quiets his emotions almost immediately. Now why didn't I think of this years ago? We go back across the hall and he washes his hands without incident. Then we go back to the bedroom, with John still blindfolded and in a much quieter state of mind. Suddenly he confides in me.
"I snuck something last night, something big."
"Thank God!" I almost blurt it out loud, in pure jubilation. My theory is intact. Seven years of hard work have not been flushed down the drain.
After some investigation we determine that John ate approximately 60 grams of sucrose while nobody was watching, just before he went to bed. This was a hold-over from Halloween. I didn't even know it was in the house. I thought we through out all the candy, but John found it in the back of the kitchen cupboard. This underscores the importance of never punishing a child for sneaking. I needed this information. His honesty is critical in our ongoing investigation. Without good information, we're lost. In fact, most of the inconsistencies throughout the past five years are probably due to his covert noncompliance. I write everything down, and look for patterns, and even attempt to run controlled experiments, year after year; but I'm missing half the data. I've probably been hitting my head against a brick wall, over and over again, and taking my wife along for the ride, all for naught.
There is a program nearby that is called Max. This is an acronym; I don't remember for what. I did some research, and Max has indeed helped many kids in middle school and high school. It concentrates on behavior modification and anger management, while providing traditional academics. John's teachers want to transfer him to Max. If you're still awake after all these pages, then you should be able to predict our response. We declined, politely, but emphatically. We can implement behavior mod as well as anybody, and it doesn't work. A stricter variant will not work either, and it could do harm. For example, they have a time-out room at Max. Ok - they had a time-out room in his elementary school too. When John was placed in the room he banged against the walls and the door, and ripped his shirt, and broke his glasses. Obviously he did not calm down. That did not help anybody. I'll say it again for the hundredth time; his disorder is biochemical, not emotional. Every day he does the best he can. If he's not behaving, he can't behave, and no amount of redirection or counseling is going to change that. End of story.
His teachers and staff think I'm nuts. They think John is acting out, and he can surely be redirected by a professional staff. I am merely mollycoddling a troubled youth. They see him every day, they see his darting eyes, they hear his distorted speech, and they just don't get it.
Although his teachers are clueless, they are kind and caring, and they have done a hundred favors for us, and for John. So we decide to give them something in return. We take John to Dr. Ferguson for an independent evaluation. This is not someone we picked out of the phone book - we went to Dr. Ferguson on the school's recommendation. That's fine; I think he'll be impartial. After three visits, here is his diagnosis, somewhat paraphrased.
|John's disorder is primarily biochemical. He is not emotionally impaired in the traditional sense. Obviously he is sad and frustrated, because his life isn't going well, but if the biochemistry were fixed, there would be fewer emotional issues to deal with. You can bring him back to see me if you want an expensive baby sitter.|
I am stunned. This is a bit like an honest auto mechanic. This man could have taken me and my insurance company for a ride, for session after session, but he didn't. Needless to say, I'm impressed. As we left his office for the last time I asked him about the best course of action, given the unpredictability of John's behavior and emotions. How should we handle school, when some days, or hours, are better than others? Here is his response.
|A program like Max, as you describe it, would not help John, and it could do serious, irreparable harm. I wouldn't go there. However, home schooling might be a great option, if you are able to do that.|
Again, this was prior to the K-12 program, so home-schoolers received very little support from qualified teachers. Nor did they receive text books, materials, or lesson plans. We had tried home schooling nonetheless, and it was a disaster. We are his parents, not his teachers, and he no more wants to learn from us than the man in the moon. No amount of reenforcement, positive or negative, would get him through a 20 minute lesson, and it usually culminated in John throwing things, and Wendy back in her bedroom crying. But Dr. Ferguson was on the mark, this probably was our best bet, even if the academic exercise was simply "Get on wikipedia and read an article about something you are interested in, then go out and play." If that's all we could do, it still would have been better than school as it was to unfold over the next 5 years.
Dr. Ferguson, an expert in neuro-psychology, saw in three visits what most people could not see after years of observations. When John isn't in control, he really isn't in control, and when he is in control, he's fine. Sure, you want to fix the underlying biochemistry, but in the meantime, don't put him in a social situation where he's bound to fail.
I took his recommendations back to school, and the teachers are not impressed. This is ironic, since they promoted Dr. Ferguson with high praise. Suddenly they don't like him any more, and they even toss a few disparaging remarks in his direction. It reminds me of Bush firing Lawrence Lindsey, who told him the Iraq war would cost north of 200 billion dollars. That's not what he wanted to hear, so bring in the next advisor. The war actually costs more like a trillion, but what the hell.
Dr. Ferguson's report notwithstanding, John's teachers still want him to go to Max. It's the only tool in their arsenal. Again, these people have done so many favors for us, and made so many accommodations for John, that we agree to visit the Max school. We talk to the principal, and the program is exactly as we expected it to be. I'm sure it helps children with true emotional disorders, or kids who come from difficult homes or troubled backgrounds, but John does not belong here. We leave, 100% sure of our decision, as opposed to 90% going in. And we can tell everyone we gathered all the information before taking the next step. Fair enough.
While we are deciding what to do, John reconfirms the carb hypothesis through yet another experiment in noncompliance. We told the girls many times that they need to hide any candy that they might acquire, from school, from anywhere, in their rooms. Well John is resourceful, and one night he found, and ate, some 60 carbs worth of cookies just before bed. The next day I had to hold him down to keep him from climbing out onto the roof. And when I held him he became so frightened and paranoid that he fought with me as though his life was in danger. I hope he doesn't get much stronger. After it was over it still wasn't over. He kept threatening to call the police and report child abuse. I have no idea what they would do if he actually made the call. This was interspersed with talk of hurting himself. By the next day he was almost back to normal. Until the causal connection is cemented in his mind, compliance will always be an issue. Perhaps the reality of his school telling him, "You're not succeeding here." will help in this regard. So I do indeed appreciate their honesty, because it's the truth, and John needs to hear it. He just can't eat this stuff, and I have a feeling he's been getting it more often than we know. Even if it is not in the house, he rides his bike to the party store, buys treats with his own money, and eats them there. We find the receipts in his pockets. He's smart enough to execute a plan, but not smart enough to ditch the evidence.
So - what's the next step? I bring up home schooling, as suggested by Dr. Ferguson, and John's teachers are appalled. They think they have failed, or they think we couldn't possibly do it well - like an untrained home-owner trying to fix his leaky pipes. There is some truth here; we're not particularly good teachers. But we're smart enough to know when he can and can't work, and when he can't, we send him out for a bike ride. We can offer more flexibility in his schedule and curriculum. Maybe we should try again. John really doesn't like the idea though; he really wants to be social, even though he can't. I don't know what to do.
A few days ago John came to me and said, "I love you more than the sky can tell." My "normal" teenage daughters haven't said I love you in years. When John's brain is well, his love fills the heavens. That's why we do it. However, we still have to keep ourselves safe, and that is becoming a concern, as you will see below.
The fact that John is high as a kite from last night's candy doesn't help. He runs at us, trying to push us out of his room, and I can smell the chemicals on his breath. He is filling the air with short chain metabolites. For the next five hours we clean his room, and toss food into the waste basket, and fight with him, while Beth cries and Kisha hides in her room. John has no capacity for rational thought. There is nothing in his head except emotions: fear, paranoia, rage, and depression.
There is a silver lining to this huge black cloud. My formula is right; it has been right all along. Years of work have not been in vein. I didn't feed him the wrong foods yesterday, and I haven't fed him the wrong foods for months. I will stop doubting myself and my approach. He can be cured, if he is willing. John needs to sign on to my program, and reclaim his life.
I have two close friends who attend AA meetings regularly; I'm wondering if John can tag along. After 13 years of near constant exposure, his brain may be addicted to the chemicals that the bacteria produce, as surely as someone is addicted to ethanol. I don't know how AA would feel about it, but I think there are many similarities.
Unfortunately this addiction foreshadows his future dependence on heroin and cocaine. He has already learned, at a young age, how to hide, and sneak, and lie, and steal, to keep his addiction going. This tunnel is going to get much darker before it gets brighter.
We could never see this pattern before, because he always snuck sugary treats late at night. He was going to have a bad day no matter what we did. We cleared his bedroom of all sugary treats, as described above, and that put his illicit snacking on hiatus, at least for a few weeks, until he puts a new stash together, as he surely will. Meantime, I think I see a pattern: Ten or twenty carbs at 9:30 is bad, and 30 carbs at 8:00 is bad, and 50 carbs at 6:00 is bad. He really shouldn't have any carbs after 7 - that is the new protocol. But 7 isn't an absolute cut-off either. One day he had almost 90 carbs at 5, and the next day was bad. I am gradually constructing a carbs verses time graph that is continuous, but nonlinear, with an inflection point at 6 o'clock.
This makes sense if you think about it. Digestion comes to a virtual standstill when we sleep, but the bacteria never sleep. The carbs just sit there and ferment until morning. Then, after breakfast, the byproducts pass through his colon and into his blood stream, and out of his lungs, where we can smell them, and into his brain, where they create insanity. I should have thought of this before - but hey, nobody else did either. Atkins, South Beach, Anticandida, SCD, Failsafe, Zone, Macrobiotic - I've read all the books, and nobody suggests a temporal correlation of this magnitude. Yes, the Zone talks about evenly spaced meals in time, but they would be shocked at my prescription - a complete lack of carbs and all the protein you want from 7PM to 8AM. Other diets don't address the issue of time or the diurnal cycle at all. So this is new. If you are battling a microbial parasite that thrives on carbs, you might try this approach: eat about 100 carbs throughout the day, but none in the evening, and absolutely none before bed, which is when most of us crave sweet desserts. It's a different kind of experiment. Whatever you do, include the time of day in your food diaries.
Since it has been a couple months, I can look back and laugh at an incident that was frightening at the time, and a bit revealing. We had battled, physically, for two hours, and John was still cursing at us, using his newfound adult vocabulary. "You f**king b**ches, you're just n*gg*r-hating racist pigs. I'm going to call the police and report you for abuse. I'd rather live anywhere than here with you fat smelly ugly fags." And on and on. In need of a break, Wendy went upstairs. Surprised by this reaction, John shouted after her, "Hey, where are you going? Don't you know that I love you?" It was so incongruous, Wendy had to laugh through her tears. "No - I didn't know. I must have missed the memo." But he does love us, desperately, and that's the incredible thing. For a moment he was able to step outside of his chemicals long enough to tell us so.
On another bad day, Wendy got in the car and left. I gave her the nod - she needed to get away, and I could handle John for a while. She was just going to drive around for an hour, to nowhere in particular. While she was gone, John ran out into the garage and found a can of spray paint. I could hear him shaking up the can with its marble inside. I thought he was planning some new and interesting form of vandalism, perhaps "F**k you!" across our brand new, $5,000 aluminum siding. If that is his intention, I won't be able to stop him. But no, the demons are in retreat, and he has something else in mind. "Dad, I'm going to paint Sorry Mom in big white letters on the front lawn. When she comes home, the first thing she'll see is Sorry Mom. I think that will make her feel better." I try to explain to him that painting the grass is probably not a good idea. It's not ecologically sound. Maybe we can think of something else. John finds a flat of flowers, and decides to plant them around the mailbox. This is more than a simple apology. He is trying to set something right - something that has been bothering him for the past three years. He's remembering Mother's Day of 2003, when he tore the flowers out of this very location. Now he's putting them back. "Sorry Mom - don't you know that I love you?"
How did our unintentional experiment turn out? During the month of June, he turned into a monster. It took me a while to put it all together, because the transformation was gradual, and there are still 100 other variables that vie for my attention. Were we giving him too many carbs at the wrong time? Was he sneaking again?
Finally I realized that a class of symptoms was gone. I never smelled anything on his breath, and he didn't act drunk, or afraid, or paranoid. He was just angry, terribly angry, at every little thing. How could five symptoms improve, while two grew worse with each passing day? The increase in nutrasweet was the only thing I could think of. The carb schedule was weakening the infection, and reducing the associated symptoms, but John was having a specific neurological reaction to nutrasweet. I took him off all fake sugars, and he improved over a couple of weeks. I asked him if he felt any better.
"It feels the same. I don't think it makes any difference. Can I have a diet soda now?" But two days later he came to me with a revised assessment. "I think the nutrasweet was really messing me up. I feel much better now. I promise not to eat nutrasweet again."
Of course the cabinet does not keep John away from his fix; it just makes it a little harder for him to score. He still walks down to the party store and buys cookies and candy. If he has no ready cash, he collects returnable cans and bottles along the way. It doesn't take much to buy a chocolate bar. An addict always finds a way. Since he is almost as strong as an adult, we can't really keep him locked in the house, so he will do what he chooses to do. But at least we aren't leaving the illicit items sitting out on the counter any more. We have done our part, and now he will have to do his.
NFF: After several years, I have decided to describe, in this blog, the events that led up to the acquisition of the two drawer filing cabinet. The day before was a Sunday, and Sundays are always horrible, I don't know why. We have learned to dread Sundays. That puts the kibosh on Mothers Day, Fathers Day, Easter, or even a nice Sunday afternoon in the park. Well even by Sunday standards it was a bad day. John fought with us, verbally and physically, for most of the morning and into the afternoon. Exhausted, Wendy went up to her room to recover, and perhaps to cry, which would not be unusual. Showing great maturity, Beth wanted to help. Typically she would run down the street to play with her friend Rachel, and I don't blame her, not one little bit. She didn't adopt these kids; it's not her job to manage them. Beth needs to hold on to some semblance of a normal, healthy childhood. But today she saw her mother in distress and she wanted to help. So she decided to cook spaghetti dinner, something we all love. I cut up tomatoes and peppers and onions for the sauce, as I always do, and Beth started cooking the sausage. I put all the vegetables in a pot and placed it on the stove next to the sausage, and John ran into the kitchen, shouting obscenities about something. Beth asked him to tone it down, trying to build a peaceful atmosphere for the evening meal. John waved his arms at her and made some kind of threat. I stood between them, something I have done all too often, though I am usually protecting Wendy, not Beth. John usually leaves his sisters alone. Beth wisely backed away and went into the diningroom to set the table. She is looking for nice dishes and candles; she wants to make everything right for her Mom. At this point I am not touching John, but I have my arms outstretched, trying to keep him in the kitchen and away from Beth. Suddenly he grabs the knife off the counter, the one I was using to cut vegetables, and holds it up against my neck. How did the hijackers kill the flight crew on 9/11, using blades that were only one centimeter long? By cutting the carotid artery. You're unconscious in just a few seconds, and dead in less than a minute. John knows nothing of this, he has no understanding of anatomy, and yet by sheer luck he has found the sweet spot. I could be dead on the floor in a widening pool of blood in a moment. Beth is in the diningroom with her back turned, and doesn't see any of this. Wendy is still upstairs. I've never put John on the ground before, never harmed him physically, but now is the time. My life depends on it, and I'm still strong enough to do it. I prepare for a lightning strike; I'll knock the knife out of his hand and disable him in one quick movement, then call 911 before he can recover. Suddenly he pulls the knife away. I think he is in shock at what almost happened. He can hardly believe it himself, and he doesn't know what to do. In a flash his mind creates a new scenario out of thin air. It didn't happen this way, it happened that way. He's very good at this form of mental redirection, frighteningly so. In his mind he wasn't trying to harm me, or even threaten me. It never happened. He picked up the knife to chop up an empty egg cartonthat is sitting on the counter. As if in confirmation, he whips around and chops the carton into little pieces with several loud whacks. Beth hears the sounds and comes running back into the kitchen, quite concerned. "It's just an old egg carton." I declare, trying to reassure her. After a moment she decides everything is ok, and goes back into the diningroom to finish setting the table. John leaves the kitchen and stays in the livingroom until dinner is ready. An hour later we are all eating together, with candles on the table, as though nothing had happened. It is quite surreal.
There is no denying it any more. We are all in danger, all of us, and John has to go. Wendy would certainly agree, if she knew what had happened. And it's not a terrible idea in any case. Later on in this blog I will write about the second home, wherein some of these kids do better in their second adoptive placement. A disruption is not the end of the world. But I didn't know anything about this at the time. I was still in the straighjacket of "This is your forever family." So I came up with an alternative, one last chance for John, one last chance to keep us together. The locked two drawer filing cabinet would hold all things carb. Was this the right path? Would things have gone better if we had put John back into the system? We'll never know.
There is something else that I did not realize for almost a year. After a couple of months John figured out how to break into the cabinet using a pair of scissors. Once again he was sneaking treats in the middle of the night. An addict always finds a way. I knew something was amiss when I found the cabinet unlocked in the morning, and I had the only key. He forgot to lock it back up, or perhaps he couldn't do that with his scissors. He finally showed me how he did it several years later, and we gave the cabinet to a friend. It wasn't serving any useful purpose in our house.
As you can see, there are things that happen in our home that I just don't write about, horrible things, things that are just too painful for words. If I described every episode, every fight, every altercation, every abbreviated school day, every discouraging parent teacher conference, it would just be too much to bear.
"Perhaps we can eat natural carbs, like fruit."
The microbe doesn't care if the sugar molecule came from an orange or a candy bar.
"Perhaps we can eat simple carbs, i.e. the simple carbohydrate diet."
Starch is quickly converted into simple sugars, so it's hard to see how this could help.
"Perhaps we can eat failsafe carbs: rice and potatoes and maple syrup."
These are probably the worst.
"Perhaps she has a specific sensitivity to cane sugar, or wheat, or gluten. We can stil eat homemade gluten free cupcakes sweetened with apple sauce."
Possible, but not likely.
"Perhaps we can eat carbs free of fructose."
Fructose intolerance is very rare, and usually makes the child deathly ill as an infant. Other metabolic disorders are unlikely for the same reason.
If you've been chasing your tail for years, and you feel your child's symptoms are food related, there is probably a microbe involved. The three most important factors in winning this war are: the quantity of carbs consumed, the time of day the carbs are consumed, and the quantity of carbs consumed. When the microbe goes into remission, (I don't know if it ever really goes away), you might find there are no other contributing factors. Aside from the carbs, my son might react to MSG, or maybe nothing at all. And you know how many variables we have looked at.
If you fit any of the patterns described in this journal, please save yourself years of heart-ache and start counting carbs now. This is the first piece of the puzzle. When the random fluctuations of the microbial colony are gone, other sensitivities, if any, are easily determined. Experiments become repeatable, and science is on your side. You just have to accept the reality of meat and vegetable stir fries for dinner, without potatoes, without rice, without a dinner roll, and without a sweet dessert. If you're looking for numbers, we try to keep dinner + dessert to 50 carbs, but your mileage may vary. Breakfast and lunch are comparable, though there is more wiggle room here.
"Wait a minute." I hear you cry. "We ran stool samples, and many other tests, and there is no sign of a pathogen. There are no digestive symptoms, and no strange smells. I don't think we need to spend time chasing the carb/pathogen theory. I can't afford another year of work leading to a dead end."
I understand. Remember, my son had no supporting lab tests either, until we found the organic acids in his blood, and that was several years into our investigations. I suggest you run a three day test. That's all - you'll have your answer in three days, maybe less. Again, and as always, please consult your doctor first. This blog is for educational purposes only.
Buy a bunch of sweet potatoes or yams, whichever your store provides. Both stand alone in their food groups. They are not related to the white potato, sugar, wheat, corn, soy, or anything else. They are also natural, without additives or preservatives. Your child is unlikely to react to this specific food, which happens to be high in carbohydrates. (If you're trying to be failsafe, use maple syrup; if you're trying to be scd, use grapejuice.) Have your child eat a bunch of yams for dinner, maybe two or three nights in a row, and see what happens. I'll bet most of her symptoms get worse, maybe a lot worse. You might even smell byproducts on her breath, perhaps for the first time. If not, carbs are not an issue. If yes, you have a microbial imbalance, no matter what medical tests might indicate. Do your best to keep a lid on carbs, although compliance is always an issue, and I have no answer for that one.
Over the past 18 months another suite of symptoms has appeared, as if we didn't have enough already. These basically fall under the heading of obsessive compulsive disorder (OCD). John washes his hands some 20 times a day, and his skin is permanently chapped. We apply lotion, but that is quickly washed away by the next cleansing. Sometimes the bathroom sink is filled to overflowing with suds.
Unfortunately his OCD disrupts the entire family dynamic. He is virtually unable to do his chores for fear of contamination. Since he initially offered no explanation, we assumed it was an expression of defiance, or perhaps laziness. Now we know it is not that simple.
I have my own biases, as do we all, so I naturally assumed his OCD was food related. However, an accidental discovery has all but ruled that out. John and I occasionally spend time at a friend's house, and in that setting his OCD disappears. It reappears as soon as we return home. This suggested a simple experiment. I handed John the tv remote and he said he was afraid to touch the buttons as usual. "If I do, I'll have to wash my hands afterwards." I then took him and the remote outside, and within a matter of minutes he was pressing the buttons with ease. We went back inside and once again he could not touch the remote. I repeated this experiment several times. The yard is safe, the garage is safe, the car, with its new-car volatiles is safe; but the house is not. The transformation is so fast, his pediatrician believes it is entirely psychological. "An air-born agent wouldn't pass through the blood brain barrier that quickly, nor would it dissipate that quickly when leaving the house. He is having a psychological reaction to your home." I am forced to agree; sometimes the psychologist is right. He is literally afraid in his own home. I don't know what to say or what to do.
Wendy picks John up from school and brings him home as usual. John asks if he could go to Gerry's house. Wendy says that is a possibility, after he finishes his homework. John brings his books and papers into the office and Wendy looks at the assignment sheet. She starts to go over the work that was assigned, but John pulls the books and papers away. "No, I don't have to do all that. Listen, here's what I have to do." Wendy asks to see the papers again. Based on past history, she trusts the teacher's report more than John's verbal account. That's what an assignment log is for. They wrestle over the papers for a minute, then John hits Wendy in the back with a book, runs out of the office, and slams the door so hard that the molding comes off the wall. He then stomps upstairs, swearing at us all the while. "You can kiss my ass. You're just a bitch. You're always beating on me." This is a recurring theme. He and Kisha both threaten to call protective services regularly, because we are such horrible abusive parents. He comes back down and stomps around the house. Kisha says something from the family room, which I cannot hear, but it probably has something to do with Gerry, whom Kisha really doesn't like. This puts John over the edge. He runs into the family room and screams at Kisha. "I've put up with your crap for 17 days, and I'm sick of it. You insult me all the time, and you're just a piece of shit." This is the first time he has directed his rage at Kisha, and being only 15 and untrained, she doesn't know how to respond. So she simply insults him back. They trade insults until John's insults escalate to threats. I have to stand between them and move John physically out of the family room. Kisha, nursing a broken toe, makes no advances toward John. She stays seated in the family room. The verbal exchanges continue while they are in ear shot of each other. Wendy tells John that he cannot go to Gerry's today, because of the way he treated his sister, and because he is out of control. Now John is even more upset. "You have ruined my weekend. You are totally unfair. Kisha insults me, and is nasty to me, and I have to lose my weekend." He kicks over chairs and tables and waste baskets. He kicks the front door with hard cowboy boots. Fortunately the door holds. He then turns to a nearby box - a fragile package that arrived that morning. He kicks several holes in the box, without knowing or caring about the contents. He runs back to the kitchen and kicks a hole in the wall, approximately a foot in diameter. This will cost several hundred dollars to repair. He is about to run back into the family room and confront Kisha again, but Wendy stands in the way. He hits Wendy several times, striking her arms as she holds them up to defend herself. Over the next couple days these blows develop into large bruises. He runs outside, grabbing a photograph on his way and tearing it up. Then he runs around to the garage. He is cussing and screaming at us. We were afraid he would damage our car, as he had done a week earlier with the rental. Wendy goes out to the garage and tells him to leave the car alone. He kicks the garbage can and recycle bin, and moves toward the car. Then he runs towards Wendy with something in his hand, perhaps a shovel. She does not have time to identify the object, but given his mental state, she fears for her safety. She kicks his leg, hoping he will back off, and he does. He comes forward again but stops short of Wendy's kicking distance. He backs off again when I hold the phone in my hand and threatened to call the police. John leaves the garage and comes back in through the front door. He goes into the living room and sits on the couch, stomping his feet on the floor as hard as he can. This causes glass objects on the end table across the room to bounce and rattle. He swears and insults us for another fifteen minutes. Eventually he quiets down, and the episode is over. Once again he is paranoid and delusional. He believes, to this day, that Wendy hit him first, then kicked him, and if he ever hit her it was later, in self defense. And he believes Kisha caused all the trouble between him and her, and that he was robbed of a fun weekend at Gerry's because of her. This is what he would tell the police if we had called. Of course the police would have dragged him off to jail or an institution.
John wakes up an absolute monster - worse than he's been in months. He probably snuck sugar last night, but won't admit it. I have to be with Wendy throughout the entire tirade. I can't break away even for a moment. John is on the edge of violence for three hours. The slightest misstep on our part could push him over the edge, which would push us over the edge - and somebody would wind up in jail. He calls Wendy a whore, who works her prostitutional magic on the nearby streetcorner, and an ugly fat bitch, and a racist nigger, and so on, for hours. We dare not respond, else his words will explode into something much bigger. All Wendy can do is cry, which evokes yet more venom from our demon-possessed child. "Wah wah. You gonna cry now? Are you some kind of baby? Do I need to change your diapers?" There's nothing we can do except get through this as safely as we can. Don't say anything, whatever you say will cause an escalation, so don't say anything. To misquote Harlan Ellison, "I have a mouth, and I must not scream."
As April turned into May, John grew worse each week. We had to pick him up from school once a week, then twice a week, then almost every day. The recurring nightmare had returned. His principal was ready to send him back to the Max program, but she literally ran out of time as the school year came to an end. For want of paperwork, John narrowly escaped a return to Alcatraz. But this is merely a reprieve, isn't it? This child, who can't make it through a day of middle school, is scheduled to attend high school, with fewer support services and zero tolerance for bad behavior. Are we having fun yet?
To our surprise, the principal suggests an aid, something we have requested since elementary school. He finds the money in the budget somewhere, bless his heart, and John has an aid who can redirect his behavior, and help him academically. They also have the option of working in the library, if the classroom is too distracting for John, or if John's nonstop rambling is too distracting for the class. Thank God for an understanding principal. But it's probably for naught. John still gets in late at least twice a week, and comes home early almost every day.
Around mid October, I was stupid enough to fall into the same trap. I found yet another book that distinguishes between good carbs and bad carbs, and yes, you can eat all the good carbs you want, if you avoid the bad carbs. No kidding - I stepped into it again. Sometimes I'm as dumb as a stump. Fool me once, shame on you; fool me 167 times, shame on me. That messed him up, through no fault of his own, and he effectively missed several weeks of school. Sometimes he was there, but he still didn't get anything done. When I finally put that book on the shelf, and return to the basics of counting carbs, things should have improved, but they didn't, mostly due to his noncompliance. He eats fries and breads at lunch, and cookies from other kids, and more carbs at night after we are asleep. We still lock up the sugary treats, but we can't lock up every source of starch. Last night he took oatmeal out of the pantry and cooked a bowl for himself - an extra 45 carbs at the end of the day. Then there's toast, and leftover macaroni that the girls didn't finish, and so on.
I started doing something I should have done years ago. I post, on the fridge, everything he eats and their carb counts. It's not abstract any more. He can see his subtotals, and how much he has left for the day, and, I hope, he will be able to see that high carb counts lead to bad days, and low carb counts lead to good days. Of course it isn't that simple. Sometimes you need five low carb days in a row to recover. And there is noise in the system - other reasons why he might have a bad day. So I'm asking him to see the correlation, and that may be asking a lot of a 15-year-old whose mental faculties are already compromised by the illness we are trying to treat.
His juvinile arthritis has gotten much worse, and that might be a good thing. When he is mentally ill, he doesn't know he is sick. In contrast, when Kisha has a headache, and is in bed under the blankets all day, she knows very well that she is sick. She can't live in denial. She can't claim she is stuck in bed because somebody else has a character flaw. If John has a similar symptom that is 100% physical, aggravated by his microbial imbalance, we may finally be able to push him out of denial. But it's harder than you think. "My back hurts because I fell down on the way to the bathroom." Then, three days later, "My back hurts because I fell off my bike." Never underestimate the ability of an addict to justify things. If you have ever been around an alcoholic, you know what I mean. No wonder John keeps sneaking, and no wonder I keep looking for another answer. But there is no other answer, and we're going to have to beat this thing the hard way.
We have started doing something else we should have done years ago. We are taking the advice of The Explosive Child to heart. We don't force him to do anything any more. Homework, housework, chores, cleaning up after himself, whatever. We ask once, and if he doesn't do it, we just leave it at that. I can't keep getting into fights, sometimes verbal and sometimes physical, over this crap; and I can't keep exposing my daughters to this chaos. They never want to have a friend over in case there is a blow-up, and I don't blame them. That's no way to Live. John may reach adulthood without knowing how to do laundry or load a dishwasher, but I'll still have my sanity. He can learn these skills on his own when he's 18.
For an outsider's perspective, let's see what school has to say. "He is doing much better." reports the social worker. "He's still failing 4 out of 6 classes, but he doesn't refer to his teachers as stupid whores, and he's not calling his aid a f**king bitch any more." It sounds like a little thing, but it's huge. Here at home, he will do about a third of the things we ask, if we don't push it. He use to do nothing we asked. So really, we've made progress since last I wrote.
What have we changed? The only thing I can think of is my strict adherence to water. "Drink nothing but water." I insisted. "Maybe some unsweetened tea, and carbonated water with lemon, but that's it. If it tastes sweet, don't drink it." This happens to be my number 1 recommendation in the introduction, and I finally decided to take my own advice.
It's interesting to review all the diets we have tried. Everyone of them allows some kind of special drink. Feingold = Coke, SCD = grape juice, failsafe = pear juice, low carb = diet Coke, and on and on. John drank whatever was permitted, and he drank it by the liter. This makes no evolutionary sense. We've been drinking water, exclusively, for the past million years. Even if you are "normal", drinking your calories, as much as 25% of your calories, is not a good idea. Your stomach does not recognize it as food, and does not register it in the budget. Food makes you full, but you can drink sugar all day long. And what do your intestines do with these drinks? Who knows? Since it is such a novel substance, and since the gut flora is so delicately balanced, the ramifications are hard to predict, and will certainly vary from one individual to the next. In any case, my #1 recommendation to anyone, anywhere, is to drink water. If you need more fruits and vegetables in your diet, eat fruits and vegetables. Don't buy one of those juicers and drink your veggies. The salesman will tell you it's better than having no vegetables in your diet at all, and he might be right, but for some folks he might be terribly wrong. John is on water and tea only, and he is finally improving.
Beyond this, I'm not watching his carbs like I use to. I still keep sugary treats locked away in the cabinet, but if he goes for a second bowl of spaghetti, I don't worry about it too much, and it doesn't seem to affect him the next day. His improved behavior, plus our relaxed attitude towards his diet, plus our lowered expectations, plus Wendy's antidepressants, combine to make our home a much more pleasant place. The girls can see it, and they are having friends over more often.
One might wonder why we aren't dancing in the streets. So long we have waited, and so much we have endured, and it looks like some light at the end of the tunnel. We aren't dancing because we have seen this light before, and it has sometimes been the oncoming train. We've been fooled before, and now we are cautious. Beyond this, Kisha has thrown us a curve, high and way outside. This has kept us far to busy to worry about John. "What's up with Kisha?" you might ask. It's not dietary, and it's not life threatening, but it is life changing. If I think it is relevant, and I get her permission, I'll write about it. Meantime, on we go.
|If a man has a stubborn and rebellious son who will not obey the voice of his father or the voice of his mother, and, though they discipline him, will not listen to them, then his father and his mother shall take hold of him and bring him out to the elders of his city at the gate of the place where he lives, and they shall say to the elders of his city, "This our son is stubborn and rebellious; he will not obey our voice; he is a glutton and a drunkard." Then all the men of the city shall stone him to death with stones. So you shall purge the evil from your midst, and all Israel shall hear, and fear.|
Just 30 years ago, Dan Fogelberg wrote about his father's "thundering velvet hand". Everyone my age and older knows what that means. Jeff Foxworhty recalls, with just a slight exaggeration, "A time-out? My father would take a time-out from his busy day to beat us." We all laugh nervously, because we know it's true. Bill Cosby has devoted hours of stand-up to this topic as well. "The belt will wail tonight!" It's funny because everything has changed. We are now enlightened. We know that harsh punishments are counterproductive. Well at least we think we know … don't we? But sometimes we wonder.
If a child can't control his actions, and operant conditioning is applied, even a gentle version thereof, then the child quickly falls into learned helplessness. He fails, again and again, and is punished, again and again, for things beyond his control. He gets depressed, angry, antisocial, and even psychotic. Hence the belt has been replaced with a time-out. We have adjusted our parenting style, and I suppose we must. But it dodges the underlying question. What is wrong with the brains of our generation? Why are 7 million kids on ritalin, with plenty more who should be? Why are policemen stationed in the halls of our local high school in an affluent suburb, while my high school, 30 years ago, never saw a policeman even once? Something has changed, something that evolution could not anticipate.
I've heard a lot of theories. I've entertained a lot of theories, as you know. Some have even implicated Sesame Street. Not that show specifically, but fast paced tv viewed before the age of 2. Look it up - you'll see the articles. And video games, and synthetics and artificials like red#40, and both parents working or the single parent working, and not breastfeeding, and the hygiene hypothesis, and on and on. Yes, much has changed, and that only confounds the problem. Too many variables.
My personal favorite has always been the diet, and it still is. Well whatever the reason, the kids are different, and that has forced a change in parenting styles across the country and around the world. We don't even realize that it is happening. We see that our inflexible and harsh punishments damage the children, and we publish articles in psychology journals and parenting magazines, and the dogma shifts. We assume the parenting style is to blame, and was always at fault, just as slavery was always wrong. But maybe the parents of old were right for their time. Maybe parenting was honed by evolution over a thousand generations to be what it is, and now we are forced to change it in one generation, because the children have changed out from under us. I can tell you that friends and relatives, almost without exception, see my son's behavior and quickly drag out the time-tested techniques. "You don't have to put up with that. You're way to permissive. Lay down the law. Give him consequences and make them stick; he'll shape up." The reaction is almost instinctive, as though it were hard-wired in our parental brains. I have the same reaction, and I still have to fight it, even after ten years. This approach may have been correct in the past, but now it's wrong, and it will probably be wrong forever more.
I'm just speculating of course. I don't know; nobody really knows. Maybe corporal punishment was always wrong - always harmful. But it seems to be part of us, as though evolution had put it there, as though that was the best way to raise kids 10,000 years ago, or even 100 years ago. All I know for sure is that it is failing us now - that it destroys the kids who are emotionally impaired, and that's a lot of kids, a larger percentage than we would care to admit. We are, all of us, being moved in this direction by an invisible force - by a generation of children who cannot behave, even if they want to. By a generation of children who could never sit still ong enough to watch Mr. Rogers. Our new approach to parenting, along with ritalin and IEPs, is just another bandage, just another desperate attempt to treat the symptoms, because we do not really understand what is going on beneath the surface.
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