Same goes when I read about breakthrough studies where kids are being given small amounts of their allergen in an effort to desensitize them. I applaud the successes, of course, and I pray a cure is found sooner than later. But who are these test subjects? And more to the point, who are the parents who are entering their allergic kids into these studies?
I’m often asked about the likelihood of Lucas growing out of his peanut allergy or the potential for a cure. And I mostly respond that holding out hope for either of those miracles is self-defeating for me. It’s only a small percentage of kids who will outgrow these allergies, I’ll usually explain.
Besides, my survival/mama bear instincts tell me that Lucas will never qualify for an oral challenge or a desensitization study. I also can’t imagine ever inviting such risk into our lives, even for the greater good. Despite the medical community’s inability to test yet for allergy severity, I know from the experience of having to save my son’s life where he stands on the spectrum.
When I recently came across a newspaper article quoting a mother saying she would do anything to get her anaphylactic 8-year-old into a desensitization study even if it posed a life-threatening risk, I was floored. Like Lucas, this boy has had his share of emergency visits to the hospital and suffers from multiple food allergies. The article focused on there not being enough studies in Canada, which may be true, but I guess what struck me most is that there are parents clamouring to put their young children in such high-risk situations.
Our allergic kids aren’t living with a disease that’s going to kill them. It’s not like we have nothing to lose. Quite the opposite in fact. Our kids live in a world where it’s more like everyone else is carrying the deadly disease and it’s our job to keep them safe from it. Avoidance and vigilance is our chemo, public awareness and labeling our cure.
But don’t get me wrong, if there are parents out there willing or even eager to put their children forward in an effort to help find a cure, I am the last person who would blow the morality whistle. I’m just shocked and bewildered by them.
So back to the original question: Who would put their child at risk to help find a cure? Who would make the sacrifice so that my child could potentially live a risk-free, fear-free, allergy-free life?
Would you?
liseetsa
I’ll tell you who would try desensitization for peanut anaphylaxis. Someone who does not want their child to go through every day questioning what they eat, who they touch, who touches them, sitting anywhere, going to school with HUNDREDS of peanut-eating people who do not wash their hands, wishing to fly across the country or out of the country to meet their grandparents for the first time. In addition, I do not want his first kiss to be his last kiss. I do not want him to have an eating disorder or emotional or psychological issues revolving around food or inconsiderate people who do not make efforts to keep his safe or understand anaphylaxis.
I do not want to “manage” peanut anaphylaxis if there is a chance my child can get rid of it and live A NORMAL LIFE. Because living with a food allergy is so far from normal you are kidding yourself if you think your child is not in danger of dying every second of their lives. You cannot control every allergen residue they encounter. What happens when they go to college? How will you manage them then? Or their friends? Or restaurant staff?
My son suddenly became allergic after a delayed vaccine schedule beginning with the polio vaccines. After the 4th shot (the booster) he started vomiting when exposed to peanuts. He was tested with blood result of 83.7. Five months later, he tested positive for anaphylaxis and the blood level dropped to 62.
Now (working with an allergist/immunologist) he has been consuming peanut flour in increasing amounts for over 90 days without reactions. He started at 1/1000th of a peanut-much less than what he would encounter just walking through any set of school doors. (We homeschool to avoid the dangers of a physical peanut butter-coated school.) Currently he is up to 100 mgs/day and has not had any reactions. If he does, it will be treated and the dose adjusted so he continuing letting his body get used to it while getting rid of it. And eventually, he will be peanut allergy free!!!
You do not have to dream about it, or be afraid of it-though you will be!!! Right now you can be treated by two doctors in the United States, Dr. Wasserman in Dallas and Dr. Nash in Raleigh. Dr. Nash is our life-saving doctor and I highly recommend him. He started and ran the milk desensitization part of the Duke study. He is more than capable and competent to desensitize people from their food allergies provided other medical conditions do not pose a problem. Visit Dr. Nash’s website at http://www.nashallergy.com
Here are a few newsclips to show our story. The study at CCH was put on hold due to personnel problems in the development dept. coupled with the fact that food allergies are not their “priority” at this time. So we moved to North Carolina for treatment as an outpatient with with Dr. Nash.
Dr. Burks is undoubtedly waiting for FDA approval but knows desensitization is the best cure for food allergies at this time. No magic drugs just peanut flour. Licensed doctors can start this treatment in their offices if they choose.
Food challenges are to see if there is a food allergy. Obviously, what you witnessed proves there was an allergy. Desensitization starts at smaller amounts KNOWING there is an allergy and prepared to treat it in a controlled environment opposed to a restaurant or home trusting inappropriate, dangerously marked food warnings. “PROCESSED IN A FACILITY CONTAINING PEANUTS” warnings on boxes could save emergency room visits and lives.
Fight that battle but do not knock desensitization until you try it. Your fear of every second should be greater than your leeriness of desensitization.
The_Mom
Who would put their child at risk to help find a cure?
Me. My 17 month old son is currently enrolled in a clinical trial for peanut immunotherapy and I couldn’t be happier and feel any more safe with the approach. Our experience has been wonderful so far and the trial he is in is about to start food challenging kids whose IgE numbers have dropped below 2 and who have been on maintenance for at least a year. I really think you need to do a little research about the clinical trials and their safety records before you judge.
My son is at risk of a reaction every single day, every time he eats…participating in this trial is safer than sending him into a world of the unknown on his own. The clinical trial protocol desensitizes kids within about 3 months of treatment…then the goal is tolerance is next. There are some kids who can’t tolerate the treatments and they do not continue in the studies…the kids’ safety ALWAYS comes first and we are able to stop at any time. I have never had the level of medical care and attention that we have as part of the trial. It has been wonderful and I feel blessed to have my son participate in the study.
I also feel blessed that our hard work will also possibly help your child, even though you seem to think less of me as a parent for doing it. I forgive you because your opinion seems to be based on a complete lack of knowledge about the clinical trials and their protocols. I am surprised that a blog on Allergic Living would be so negative about the research studies.
Oh, and I am not alone….the trials fill up fast and there is no shortage of people who are willing to put in the work to help their children be desensitized and hopefully become tolerant.
So, here is hoping that one day your son will benefit from my son’s participation. Good luck to us all!