my allergy boy

So, for those of you who follow me on FB and know me in real life, you know that Timmy was diagnosed about 3 weeks ago with some pretty major food allergies. Soy, peanuts, all legumes, tree nuts & sesame. It all started after an unfortunate incident with a bottle of Ensure where I almost killed Timmy. Total allergic reaction replete with vomiting, hives, red itchy eyes, running like a faucet nose, wheezing and coughing. Good times.

I took him to an allergist where he had a skin/scratch test which turned up really positive for soy, peanuts, legumes and sesame. A blood test later on showed the same things. Upon getting the blood test results, the doctor told me to take ALL soy out of his diet including soy lecithin and soy oil, as well as all products made in factories that produce peanut foods, all legumes, and all sesame/sesame oil products. For 3 months. Regardless of the fact that he ate soy sauce at least 2x a week, chocolate (with soy lecithin) all the time, bagels with definite sesame cross contamination, green beans, and most of his snacks were made in peanut facilities. With no reactions ever. Until the Ensure with ‘concentrated soy protein’. I was seriously more worried that he would die of starvation before anaphalaxis. I got an epi pen and benadryl and the doctor scared the crap out of me. I started watching Timmy like a hawk after every single piece of food went in his mouth. Even all of the foods he’s always eaten without problems. Spent some time (a lot of time) crying in supermarkets and at home, trying to figure out how we were going to live like this for 3 months and probably longer. I called all of our favorite restaurants and deli’s asking about ingredients used, read a thousand labels and online articles. And just got more and more convinced that this diagnosis made no sense. He ate soy (the boy will drink the soy sauce out of the dipping bowl unless i stop him). He ate cross contaminated products. He was fine!!!

We went to Florida where all we do is eat out and toward the end of the vacation I was just getting so annoyed by the whole thing because he WAS eating all that food up to the day of the diagnosis. So with epipen and benadryl in hand and the hospital down the block, we had pizza made with soy oil (at a restaurant we’ve eaten at many times before) and french fries fried in vegetable oil (which may or may not contain soy oil). And you know what? He was FINE. Not a symptom. Not a sniffle. Not an itch. And then he had sushi & steak teriaki with soy sauce when we were back home in NY. Again, fine. I was so happy but so confused/annoyed/needing a second opinion.

So, yesterday we went to Mt. Sinai Hospital Dept of Pediatric Allergies in NYC to see Dr. Kim for a second opinion. And I’m so glad we did. He still came up positive on her scratch tests for soy, peanuts, sesame and birch trees (he gets that one from me!). But, the big difference was that Dr. Kim said that Timmy CAN still eat all of the things that have soy, soy lecithin, soy oil, and cross contaminated products that he has been eating for at least 4 years! Obviously, he has to be careful not to have real soy (unprocessed soy or soy protien/concentrated) foods, not concentrated sesame foods, and no peanut foods at all. Totally doable and so much more of an appropriate response from this doctor. So we’ll keep the epipen and benadryl on hand for emergencies, but Timmy can eat what he likes! Which is the best news of all!!

Going back for testing again in a year to see if he outgrows anything which is a definitely possibility.

A big thank you to anyone who messaged me, emailed or called. Hugged or texted. Chatted or calmed. Your support and advice was SO helpful. Just to know that others had the same experience with the first doctor with him being crazy conservative and sought their own second opinions. To hear of other food allergy stories and that their kids are OK and doing great. You all saved me!