Last Halloween was one of my few mistakes when it comes to food my kids aren't supposed to have -- and I remember it vividly (the packaging on the $9 specialty pizza looked just the same as my usual, but this one was NOT dairy free). We were so excited to get Pablo and Tyrone out trick or treating that we hastily fed them some pizza, got them dressed, and headed out the door. Tyler's reaction (full-body hives, itching, and coughing likely related to semi-restricted airway) was a little delayed, thus was not detected until we were fully dressed, fully trick-or-treating. It was really scary, especially in hind-sight, and I should have probably taken him in.
People (ok, mostly doctors) often ask what happens when they eat milk, eggs, or nuts, and I honestly can only guess they'd have hives based on the very few times we've tried -- but we rarely try. And we never cheat -- at least not intentionally.
This whole thing started when the boys were around 15 months old and they had a lot of eczema issues. We had them blood-tested by the pediatrician and when the results came back with a LOT of food issues. We eventually had to have them tested (poked) two more times and eventually implemented a no WHEAT, MILK, EGG, and NUTS diet. We were referred to a dietitian who, based on ALL of the items they had a strong reaction to, basically told us "good luck."
We've hobbled by on calcium fortified OJ, hot dogs, loaves upon loaves of homemade banana / pumpkin bread, sausages and pancakes, fake cheese, fruit snacks and bananas. I realize that they do not have a "complete" diet, but beyond the allergies and the eczema, they are healthy and growing "normally" so I try to comfort myself with that. The boys have been doing this "diet" as long as they can remember and really never ask for or take food from anyone, unless they know it's ok. (I think part of the success is that there are two of them.)
This past July, we finally had them retested (blood test) and the results again came back sky high. To give you an idea, anyone with an allergy level above of 14 in any category is considered allergic (allergic enough to probably try to avoid that food). My boys had very few foods under 14 and most of the common foods (corn, wheat, soy, milk, eggs, nuts, rice, sesame...) were all more like 80 to 100+. Again, I was essentially told "good luck."
One thing I did notice from this testing, though, was that the soy and wheat reaction levels were essentially the same. And since we had never really cut out soy and they've been really pretty healthy and eczema-free, I decided it was worth a try to re-introduce wheat. This began in September and while I do think their bodies went through a period of adjustment (digestion issues for a few weeks), I think they do pretty well with it now (really only Sam has any increase in symptoms). Let me just tell you: WOW. Wheat is huge. HUGE. Wheat opens up a whole new world for us in terms of food. The number of "normal" foods that just contain wheat and soy (gram crackers, chicken nuggets, etc. - mostly convenience foods) is amazingly wonderful. The main problem is that they (the twins) are quite risk averse and HATE to try something new -- even something like fresh, homemade cinnamon rolls (with wheat). They simply refuse. So while our world is open, we seem to not want to go in.
And then today, we had yet another allergy test done but this time was the traditional "scratch" testing on the back. (There are a lot of reasons and a lot of opinions on which type of testing is better ... I just wanted to
try something else, plus our deductible is met for the year.) We switched doctors to my allergist, Dr. Sara Uekert, at Grand Rapids Allergy and went for it with the twins. It was not fun. It was not easy. It took over 3 hours. But we got through it (Sam better than Ty -- he was not having it and has a few popped blood vessels in his face from fighting us holding him down). The results aren't great -- really no changes --but at least they didn't give me the "good luck" vibe. She did mention, though, that my kids are highly allergic (as am I) and I think this is where the "good luck" vibe often comes in-- their results are always on the highest end of the spectrum for most of the items tested. (She did explain, though, that this doesn't mean they would have anaphylaxis. They are very allergic to a lot of things, but often it is more dangerous to be not very allergic in general but quite allergic to one thing -- like peanuts.) We also tested for environmental allergies today and they have a bunch of those too (well, of course).
My take-away from today is that maybe in a year we should start allergy shots for the environmental allergies. She confirmed my no milk, eggs, or nuts plan, but also suggested we try a milk / egg challenge in the office which involves eating foods baked with milk or eggs so as to see if they are allergic to milk / eggs if they are simply IN something (this would allow for eggs / milk in baked or cooked recipes). So MAYBE in the future.
Oh, Amy. What a lot for you (and them)! But glad the wheat seems to be going okay -- right away I thought, cheaper snack food! :)
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