Chicago has pretty much been the final frontier for clinical trials. We've watched year after year as Duke and Mount Sinai and even Arkansas (Arkansas!) set up clinical trials. Several years back, I did call Duke to see if there was any possibility of flying in to participate, but local residency was a requirement.
We participated in the food allergy benchmarking family study at Children's Memorial Hospital several years back and it was a great experience (other than the blood draws for my then 7-year-old daughter). In addition to receiving a comprehensive work-up of my allergic son, we were also given an allergic profile of the entire family, including a measurement called Total IgE.
Total IgE is just what it sounds like - a measure of the total output of immunoglobulin E by the body, the antibody type related to allergic response. (A RAST test measures IgE for individual allergenic proteins like peanut.) Total IgE is not clinically useful so it's only measured when doctors think there may be a problem with the immune system as a whole, like hyper IgE syndrome, or for research purposes.
Interestingly, I learned during the course of the study that children with multiple food allergies often have very high total IgE levels. A normal (non-atopic) level is <130kU/L; someone with hyper IgE syndrome might clock in at more than 15,000kU/L. Here were the results from our study:
My husband has severe asthma and my daughter has environmental allergies so this made sense. More important, it allowed me to blame my husband for all the issues with my son.
I'm only half kidding.
Why am I so excited about the possibility of participating in this study? Of all the treatments looked at over the years, only FAHF-2 truly seems to have the potential to cure allergies. While the oral tolerance studies have been promising, they don't always stop allergic reactions from happening. Instead, they "stretch the balloon" so participants can tolerate more of the food to which they are allergic. Some participants increase their tolerance to so high a level that they are effectively no longer allergic; other will still react once they exceed their new tolerance.
What makes FAHF-2 different from the tolerance studies is that it appears to retrain the immune system. For whatever reason, the immune systems of kids with multiple food allergies gets off on the wrong foot. This treatment seems to essentially reset the immune system by decreasing the overall levels of IgE in the body and increasing IgG, a "good" immune molecule. The result is that the body no longer mistakes common foods for toxins or parasites. Additionally, unlike with the one-at-a-time tolerance studies, FAHF-2 can tackle all allergies as well as asthma symptoms. Best of all, the effects seem to last well after the medicine is stopped. (How long remains to be seen...but that's the point of a clinical trial.)
I have no idea if we'll get in - we're just at the information gathering stage. However, I'm sharing my thoughts in case there are other readers in the Midwest who might be interested. There's nothing I'd like better than to send my kid off to college knowing the danger from anaphylaxis was a thing of the past.
Technical Footnote For Fellow Science Nerds
As I mentioned in a previous post about food allergy deaths, research shows that the open loop between the IL-4 and IL-21 cytokines is at least part of the reason some people die from anaphylaxis. FAHF-2 works to "tamp down" the IL-4 cytokine response. At the same time, it increases interferon.1 (Interestingly, at least to us science nerds, hyper IgE syndrome also seems to be tied to excessive IL-4 caused by a genetic defect.2) Long after treatment, both total IgE levels and specific IgE levels for peanut were way down and "good" IgG levels were way up3,4 , essentially modulating the helper cell immune response from Th2 to Th1. That's a big deal!
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