We started the food allergy diagnosis saga back in August 2008. Both kids have been on pretty restrictive diets since the beginning of September (no wheat, gluten, dairy/casein, or eggs; each child also had individual sensitivity to random stuff like almonds, peanuts, coconut, green bell peppers, and more).
We have completed one round of antibiotic treatments for intestinal parasites and one long round (three to four weeks) of antifungals for the colonized yeast infections. The kids each received four sets of supplements per day (two rounds of probiotics, two of vitamins and omega 3s and other customized supplements). It took me at least an hour per week to pre-measure everything into individual little plastic lidded containers (my sanity saver, instead of spending a half-hour each day doling out the same stuff over and over), in addition to the time spend mixing each supplement and following the dosing schedule.
Charming Boy was ill nearly every two weeks throughout the winter. Many of those illnesses required antibiotics to conquer. Most of his dietary supplements focused on improving his immune sytem (zinc, vitamin C, plus at least three other immune supplements).
Miracle Girl had a rough time with diet modification, especially in school with daily snacks brought in by rotating parents who are not always especially concerned with nutrition or appropriateness of snack choices (hello, chocolate-covered pretzels?!). She became a champ at swallowing pills, and learned to just down her smoothie-style supplment drinks with no complaints. I am really very proud of her for that. Most of her supplements focused on improving her volatile and socially-clueless behavior (providing neurotransmitter support).
Charming Boy still exhibits his same milk-allergy pattern, but his immune system is very strong now. He has been able to bounce back from illnesses (like croup and conjunctivitis) within two days with no antibiotics. This is a HUGE and welcome improvement in his health.
We have just finished another round of testing for Miracle Girl to see where she is at in terms of intestinal yeast overgrowth. There is evidence of a lingering stage 1 yeast overgrowth (the most mild form), despite all the diet changes and the long antifungal regimen. We will probably do one final antifungal round, then give most of the rest of it a break. She has tested negative for the celiac disease genes, so we feel comfortable in weaning her off the GFCF diet. We have held Tiny Boy back from reintegrating the foods until both kids could do it together (makes it so much easier that way).
Honestly, I had hoped to see a much greater improvement in my daughter’s behavioral issues. And some days are great. Maybe once a week we’ll have a really great day, and I recognize that as a clear improvement over basically never having a good day. However, I have dreams of having multiple good days strung together, with fewer outbursts and tantrums, more social awareness, and evidence of a general ability to focus and participate appropriately in the activites of a normal day. It does not feel like that is too much to ask for.
So, we have reached the end of the term I had promised my husband where we would re-evaluate the diet modification approach. It’s been nearly 10 months, and I am ready to wean the kids off almost everything. My sincerest admiration goes out to all parents who do this for a lifetime. It is fucking hard to follow 24/7, and you have to tailor your entire family life around it. We were lucky because our kids didn’t have anaphalactic reactions to these foods; I have friends who have to rush their child to the E.R. whenever she is exposed to even the tiniest amounts of gluten, egg, or dairy. For that distinction, I am grateful.
I feel a bit bitter that I followed this regimen so wholeheartedly and do not have clear results to show for it (for Miracle Girl; it obviously worked for Charming Boy). I am extremely grateful to our family who were so supportive of following the diet and dosing the supplements with us whenever we were together; toting bags and coolers of specialized foods and seeking out specialized grocery stores in nearby cities and states for trips where the kids went to stay with them; for scrutinizing menus and withholding some of the classic grandparent/kid destinations because there is nothing they could eat there; for being willing to learn and be supportive of our efforts, all in the interest of helping our kids.
My next step for Miracle Girl is to learn more about psychtropic drugs for people affected by ADHD. It runs in her genetic line, and it’s becoming clear that academically and socially she NEEDS something to help her focus and be able to reign herself in to participate in basic ways day to day. I have avoided this potential conclusion for at least two years. We will begin the ADHD evaluation process with our pediatrician. For every positive outcome I’ve spoken to a family about, I’ve also heard about the potential and serious negative side effects.
In one aspect, I look forward to a potential pharmaceutical trial. As a particularly astute friend put it, “popping one little pill every day has got to be easier than all the hours [and money] you put into the diet and supplements each week!” Probably a lot more affordable, too.
I wish it had not come to this point. but when I am completely honest with myself, I have to consider the “better living through chemistry” route, in case it is a step in that miraculous direction I’ve dreamt of for years.
