John attends a special ed program in the morning, with four other EI students, then he goes to regular classes in the afternoon. The first week is glorious. He receives "student of the week" award in special ed, and garners rave reviews from his afternoon teachers. What a wonderful way to begin middle school! We all heave a sigh of relief. He's going to be ok. Life is good.
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, and that 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.
"If I knew of a diet that would make you well again, would you do it?"
"yes." he promises through his tears.
"Even if it was hard?"
"Yes."
This child has had a miserable life for twelve long years, yet he keeps trying every day. Over the past five years we have gone through a dozen failed theories, yet he is looking to me for answers. And now, I get the sense that time is up. He needs to get well, and soon!
The best bet is the SCd diet, 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; he just doesn't. You gotta love this kid. But he's not getting any better either. 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? 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 childhood? 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.
If a diet forbids even small amounts of most of the natural foods on Earth, I will call it 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 nearly 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 stand at the threshold of 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 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 between 60 and 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. That's fine for George W. Bush, but personally, I would have preferred some allies.
We cut back on carbs, holding at about 75 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, because the bacterial colony is smaller.
In desperation I also switched medication, from straterra back to a newer form of ritalin. I know that anyone on the outside, anyone who has not lived our story from the beginning, would credit his improvement to the drug. His teachers do. But I know better. Ritalin is not going to inhibit the production of butyric acid, which is no longer apparent on his breath. Diet is the key; medication is a temporary patch. We need the patch; he couldn't go to school without it; but it will never make him well.