Last week, as I read this post, featured on The Humble Homemaker, I realized, “I’ve never told our allergy story.” (Told, meaning blogged). I can only guess that it’s because I wasn’t writing as much at the time. I did find a very short note and status update that I made on Facebook the day of Dietrich’s initial allergy testing (in August 2010, however, that doesn’t tell the whole story. Dietrich’s allergy story begins shortly after starting solid foods (maybe even earlier as he’s always had eczema). Without warning, for seemingly no reason, he would throw up everything he’d eaten all day up until that point. I took out the most obvious thing I could: dairy. I even had a basic pediatric panel done in October 2009 and a skin test for milk. Milk did not react though he showed a severe allergic reaction to cats and dogs. The mystery remained unsolved.
The problem was sporadic at best but occurred often enough that I knew it had to be a common ingredient. Early on, I discovered that he didn’t tolerate peanuts, in part because he would refuse something obviously peanut-y but also because he would throw up even a teeny tiny pinch of a granola bar that might contain traces of peanuts, so I avoided them. These unaccounted for episodes though were an immediate rejection of the food – and anything else remaining in his digestive system. When I think back on that time, I wonder if Pediasure and Pedialyte sustained him better than actual food.
As soon as he turned two, I went to our pediatrician and received a referral for a pediatric allergy specialist. Now, this pediatrician was otherwise useless, giving me no help or feedback, but he at least gave me the referrals I asked for (previously, he referred me to a pediatric ENT and Dietrich had his adenoids removed about four months before his second birthday – another thing I apparently didn’t write about back then). The allergy testing revealed a 4++ reaction to eggs and peanuts. At that time, he showed a minor reaction to wheat, and the allergist advised me not to remove it from his diet unless we saw any reaction, or he wouldn’t be able to eat it again. Egg allergies are outgrown 80% of the time, vs. peanut allergies being outgrown only 20% of the time. About a year later, I made fish for supper. Dietrich had previously eaten fish without any problem. On this night, he began to swell and break out in hives. I checked the marinade (after administering Benadryl – this is before the new information to first use an EpiPen became standard practice) as I’d used something new, and couldn’t find any contaminate there. I decided to conduct an experiment by preparing fish the same way as usual the next time, only Dietrich had the same reaction. Since he was due for an allergy follow up, I had them add fish to his testing. All white fish came back 4++. His other allergies were also still present at that time.
I appreciated greatly what Jessica wrote on her post (linked above). I have some experiences of my own to add:
- The biggest and most important thing I want all people to know about allergies is that the allergic person doesn’t always respond to the allergen, in the same way, every time they are exposed. For us, Dietrich could eat more baked goods in Germany. My belief is that it has to do with fresher, less processed ingredients. He could eat a bakery product, even one made with eggs and not get sick. However, if he ate a packaged cookie containing egg, he would get sick every time, no matter where it was manufactured. (He may occasionally have decided it was okay to eat such things at the Kindergarten. He did eventually learn better, and I did set up a good working relationship and overcome the language barrier with his teachers to accomplish keeping him safe).
- Don’t put food on my child’s plate. Shortly after his allergy diagnosis, a very well-meaning, though pushy, lady at church put a cookie on his plate, in the potluck line, without asking me, because “every boy needs a cookie”! I may have screamed, or at least spoke more loudly than intended when I said, “NO, HE DOESN’T!” I explained why, but I don’t think my initial reaction was very graceful. Generally speaking, I think each parent should only tend to their own child’s plate unless someone else is specifically helping that family and knows that family’s needs. I haven’t gone the route of quitting potlucks. Sometimes I bring a dish and a packed lunch for Dietrich, but I don’t think he minds. He doesn’t really know any difference. I always make sure to bring a dessert that is safe for him.
- The little line that says “may contain traces of…” sometimes matters as much as if the ingredient is present in its whole form. Dietrich is that sensitive to peanuts. I know which brands of chocolate chips are trustworthy and those are the only ones I will buy. This line is optional, companies are not required by law to include it. I’ve learned which brands are safe through research and sometimes very unfortunate trial and error.
- Baby foods and toddler foods for “convenience” contain egg whites (even though some pediatricians still recommend delaying the introduction of eggs until after one year). I was livid when I read the labels and discovered this.
Dietrich is almost seven now and knows his allergies. He knows what not to eat. He can read labels. He asks about what is safe and what isn’t. He recognizes the familiar brands. The hardest part of this story happened in the year and a half following the allergy diagnosis. I had to retrain Dietrich how to eat. He basically quit eating something when it made him sick. I sometimes wonder if he only made it to the age of three because of Pediasure. Now, I have a hard time filling him up. He enjoys all the foods he can eat. Even though he’s sometimes sad about what he can’t have, I don’t think he’s really missing out because we make everything he can have such a treat.