Samantha Yaffe’s frank take on motherhood with allergies.
A few years back, we found ourselves between allergists. Our first one died a year after Lucas was diagnosed with peanut, tree nut and egg, and the second one was, well – to put it mildly – not a good fit.
After pulling a few strings, Lucas, Honey and I headed off to meet allergist No. 3 – a very reputable doctor, renowned for his allergy research.
I was feeling confident and partly excited as we waited the requisite 45 minutes in the hallway along with dozens of other allergics of all ages and stages. The wait continued for what seemed like another hour inside the good doctor’s office, a warmish atmosphere, with some kiddie toys on the floor and family photos adorning his desk.
When he finally arrived, the greeting was a bit curt, but I quickly launched into our story, which he seemed keenly interested in for about 40 seconds before the nurse came knocking. “Just a minute,” he interrupted, and left us again waiting in the room.
Ages later he returned and instructed me to resume, but this time he was totally distracted, his eyes affixed to the door. It wasn’t another minute until he excused himself again. After yet another in and out, a nurse finally ushered us back out to the corridor for some more quality waiting time, no explanation.
It wasn’t until the code blue sounded minutes later, and we witnessed what appeared to be every doctor, nurse and orderly in the hospital running down the hall into the room next to the doctor’s office, that we realized there was a real emergency.
At some point during the pandemonium, we and the rest of the allergics were moved to a waiting room around the corner, given few details despite a whirlwind of questions from the anxious lot of us.
Turns out, one of the patients we’d been sitting near in the hallway earlier was there for an oral allergy challenge. She was in her 20s, and I have no idea what she was being challenged with, but whatever it was, was bad, life-threateningly – maybe even terminally – bad.
To this day, I don’t know if she came out alive. I called the hospital the next day and the day after that to find out what happened, but of course nobody was authorized to divulge that information to me.
It was a scarring moment. One I will always remember and be reminded of when I hear the words “oral challenge.”
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!