Every year we make a big trip to the Jaffe Food Allergy Institute at Mt. Sinai Hospital in New York City. We have been able to find good local allergists – who are the most practical to see for food challenges, pressing issues, and the endless school and camp form updates, but the chance to pick the brain once a year of one of the most prominent pediatric food allergists in the country, Dr. Scott Sicherer, is invaluable. We use these appointments to ask big questions: what should our next food challenges be, what food trials would Bubba be best suited for, what 504 accommodations should we seek when Bubba starts public school next year, what could be causing Bubba’s mystery hives, are we meeting her nutritional needs, etc. These appointments are vital to us as sources of knowledge and also for allergy-mama anxiety. Food allergies are hard. You want to fix it, but there really is no ‘fix’. Avoidance and preparedness for accidental exposure are the only real protocols. But all mamas want to fix things. It’s really really hard to just accept that your kid got the short stick. I can satisfy some of that drive with these appointments. They help me feel that I am doing everything I possibly can for my kid.
This year’s appointment was a mixed bag as usual. We added a couple new allergies (salmon and birch) which is always a bummer. Bubba had recently gotten hives on two different afternoons after I fed her a salmon dip. I suspected the salmon but she had previously tested negative for it. At the appointment we did a small series of skin-prick tests and she came back positive. I know losing salmon isn’t the end of the world, especially in the diet of a four-year-old, but adding anything to our avoidance list is very frustrating.
The addition of a birch allergy is interesting. Seasonal allergies typically don’t appear in children until ages 4-6. Bubba had previously tested negative for birch, but she was only two at the time. A birch allergy can cause oral reactions to foods that are cross-reactive. This may explain Bubba’s transient oral reactions to celery, carrots, bell peppers, raw tomatoes, and fennel. I’m hoping it will also explain away cumin, but that is less likely given her higher IgE number. A birch allergy can also cause a cross-reaction with peanut. The peanut protein Ara h 8 is so similar to birch pollen that those with a birch pollen allergy will often test positive to peanut and may have mild pollen-like allergic reactions upon ingesting peanut. That is why component testing is so important. We know, through component testing, that Bubba has a ‘true’ peanut allergy that is more often associated with anaphylaxis. But I now have big questions about whether Bubba is allergic to other legumes or if these are merely cross-reactive with birch (or peanut). She outgrew soy, eats black beans, and passed a food challenge for chick peas. She still has white beans, kidney beans, fava beans, and lima beans on her avoidance list. Imagine if we could strike four more? I also wonder if new and emerging seasonal allergies could explain her eczema flare ups and mystery hives last spring, over the summer, and this fall. Lots to think about.
The other bummer was that Dr. Sicherer doesn’t think Bubba would be likely to pass a baked milk challenge and therefore he wouldn’t support her doing one, absent much lower IgE numbers on a current blood test. Sigh. I was really hoping to start her on baked milk therapy, similar to what we’re doing with egg.
Positives from the appointment included the chance to consult again with a nutritionalist who gave us a great recommendation for a calcium and Vitamin D supplement, encouragement to give Bubba a daily probiotic (we chose this one from Mercola), and some very exciting negative skin-prick test results! Bubba tested negative for lentil and green pea. We will follow up with blood testing. If Bubba is negative for pea and can pass a food challenge, that would be HUGE. Pea protein appears in a bizzilion vegan foods that would otherwise be great milk and egg substitutes for Bubba. She had two anaphylactic reactions to peas before the age of two and hasn’t been exposed since. Fingers crossed!
Because our dream is to get Bubba in a clinical trial that can offer her some level of desensitization to some (any!) of her allergens, it’s important to us that Bubba always associates these trips with fun, adventure, and a chance to have special time with me. Although we were at Mt. Sinai for a couple hours and had some testing, the bulk of her day was spent riding trains, visiting playgrounds, riding a carousel, and at the zoo. She even got to eat out at a restaurant called Chick Pea after I cleared it ahead of time. A pretty exciting day for a four-year-old!