I've been dreading this week for the past two years. Fifth grade camp. Two months ago John and I decided there was no safe and/or practical way for him to go to camp with his class. Perhaps he could go camping with his grandfather instead. We would fill the motorhome with safe meals, as we have done before, and off they'd go. That's better than sitting home and watching tv, but it's not the same as camping with your friends, which is a once in a lifetime experience. Sometimes I read through my camp log, and it takes me back 35 years, as though it were yesterday. My camping experience included, among other things, my first kiss, and a joy that seemed as vast as the ocean. Her name was Lisa, and I fell pretty hard. I still think of her fondly, and hope she is doing well. I don't specifically want John to fall in love, but I do want him to go camping with his classmates, and it just didn't seem feasible.
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 try it."
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. He had to drink a cup a day; a pint would be better. 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 fine.
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. 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. I just can't believe it. I'm going to have to call his doctor and tell her she was right after all. Then we can decide where to go from here. Unfortunately my employer changed insurance providers, and his doctor, who has worked with us for five years, isn't on the list. Isn't that sick!? The saddest aspect of the United States, domestically, is our approach to health insurance. We need national health insurance, and we need it today! At a minimum, health insurance must be separated from employment.
The only thing that may save us is Medicaid. As part of the special needs adoption program, John receives medicaid coverage until he is 18, and his doctor accepts medicaid. So it looks like we can continue to work together to treat his medical condition. The girls will have to change doctors though, and there's nothing I can do about it. Christ Almighty - stop worrying about gay marriages and flag burning, and fix the health insurance crisis in our country!