As a kid, there was nothing better than eating chocolate pudding. It didn’t matter if it was pudding in a cup, the instant box mix ready in five minutes or the cook and serve box with the skin on top. But how much would I have been willing to do to get that pudding? Well, recently, I found out that my 12-year-old daughter would do just about anything.
If you read my blog post "National Peanut Butter Day" from last year you know that she is highly allergic to peanuts and tree nuts. So, a few weeks ago, when my wife stumbled across a Facebook post from NC Faces about a clinical trial for nuts just getting started across the country, including at UNC Chapel Hill, about 40 miles from where we live, we were very intrigued. We exchanged a few emails with one of the program’s coordinators and then my wife and I had a call to discuss the details. The study is testing whether or not Omalizumab, generic for Xolair, a drug already approved for severe asthma and chronic hives, can help reduce or eliminate allergic reactions to peanuts and several other tree nuts.
The study has several different paths for its participants. As an early participant, my daughter’s path would start with an assessment including blood work, a pee test, and a scratch test for more than 20 allergens. Then, a series of four food challenges over 3 weeks to prove her allergies are severe enough to enter the study. These food challenges require her to knowingly ingest the allergen in increasing amounts, starting with just an infinitesimal amount, up to roughly one full nut, ground into a powder and mixed with an oat flour. The goal? To have an allergic reaction. To intentionally cause the body to rebel against the food which could occur with a little shortness of breath and some stomach aches, a bunch of hives, vomiting, or perhaps, all of the above. In the best case, a little Benadryl and all is normal again. In the worst case, a shot of Epinephrine and a trip to the ER. Yes, a scary, scary thought. Oh, and if all goes well and she reacts to her allergens, she’s just getting started. Next up, a series of shots every two weeks for 16 weeks, and then more food challenges to test the impacts.
Why would my daughter put herself through this? Well, there’s the obvious answers. There’s the chance that the medicine works and she can live with a little more piece of mind that an accidental cross-contamination with one of these foods, or even an accidentally ingestion wouldn’t send her to the ER, or worse, to her death (yes that’s possible if you didn’t know). There’s the opportunity to help mankind by being a part of a study that could be approved to help others like herself with severe nut allergies.
Ah, but there’s a third answer to this question. During her food challenges, those servings of the nuts aren’t only mixed with oat flour. Yep, you guessed it, they’re mixed with chocolate pudding! She could have opted for apple sauce, but who are we kidding?
When my wife and I sat down an explained all the details to our daughter, she was scared and nervous, expectedly so. She does not like needles and the idea of knowingly eating her worst nightmare was petrifying. But once we mentioned the pudding, her mood changed rapidly. It was as if a rainbow had appeared with dancing unicorns and a pot of chocolate pudding at the end of the rainbow and she couldn’t wait to get started. So maybe that’s a slight exaggeration, but it’s so true that the idea of eating all that pudding made the whole experience palatable and one she was willing to do.
So what now? As I write this article, we are sitting in a private room at UNC observing our daughter as she goes through her second food challenge. It’s gone well so far and we are progressing towards inclusion in the study. Her scratch test showed all of her known allergies and a few more, and her first food challenge ended in a minor reaction with some stomach pain and slight difficulty breathing, nothing a little Benedryl couldn’t resolve. And now we’ve just taken all the doses for round 2 and are standing by as it’s unclear if she’s having any reaction. One of the four tests is a placebo, so it’s possible she won’t have a reaction. She’s been strong and brave and I have no doubt this will continue. But there’s been one disappointment.
Each dose has been mixed with just a small spoonful of pudding. She was expecting a full cup of pudding each time! Of course, with doses coming 15-20 minutes apart, I think 6 full cups of pudding in 2 hours might have led to all sorts of other discomfort. So it’s probably all for the best.
By the way, the study is still looking for participants. If you know someone who might be interested, check out the study’s website for more info.