I will never forget holding my dying son in my arms, not knowing whether these were going to be his last breaths, the last time I would look into his baby blue eyes. Fortunately, this story has a happy ending. For some with life threatening food allergies there is no happy ending. In 2017 we tried a relatively new treatment called private practice oral immunotherapy and it changed his life. It saved his life.
Nick was an extremely tiny baby. We didn’t know at the time he had a condition called growth hormone deficiency or pituitary dwarfism. We decided to try peanut butter as a source of protein as suggested by his pediatrician. I gave Nick a tiny taste of peanut butter and with his first bite his eye swelled shut, he started rubbing his runny nose and I could hear him wheezing. I hesitated and called my sister first and then called 911. When the EMTs arrived, they gave my tiny 13-month-old baby an adult dose of epinephrine. Two more doses of epinephrine were administered in the ambulance on the way to the hospital.
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It was hands down the most terrifying moment of my life. In that moment I had no idea if my baby boy was going to make it. I called my husband at work to tell him what was happening. We still don’t really talk much about those moments when we just didn’t know if he was going to make it, where I was alone with Nick in the ambulance and he was alone navigating New Jersey rush hour traffic to try to get to him. I vividly remember collapsing onto each other at the hospital.
Nick ended up with a few more doses of epinephrine as he experienced a bi-phasic or rebound reaction and spent several days in the local children’s hospital. I will be forever grateful to the EMTs, doctors and nurses that saved his life that day.
Our lives changed dramatically over the next few days. Nick took his first steps and we took our first steps into our new lives as a food allergy family. No more going to random restaurants without calling ahead to see if it was safe for him. No more buying food without reading labels first or calling companies to see what other products are made on the same equipment. Companies are not required by the FDA to list whether products are made on shared lines with allergens, only if a particular product contains one of the top eight allergens as an ingredient. The top eight allergens are dairy, peanuts, tree nuts, shellfish, soy, wheat and fish. Just because a product does not list peanuts as an ingredient does not mean they do not make products peanuts on the same production lines. Cross contamination is a big issue in the food allergy community.
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In September 2015, Nick had another anaphylactic reaction requiring the use of his epinephrine auto-injector, after eating ice cream a company promised us was safe according to their guidelines. They promised me, on the phone and in writing, their ice cream would be safe for him to consume according to their strict manufacturing procedures. However, one minute after ingesting it he experienced anaphylaxis.
This time we were prepared. After he ran over to me and I noticed symptoms of anaphylaxis, I yelled to my husband to call 911. Nick laid down and I used his injector on him, all within 90 seconds. His reaction this time was much milder because we were prepared and stopped it in its tracks. With anaphylaxis, the earlier you use epinephrine, the better.
This still wasn’t enough for me. I wanted more. I wanted my son safe. Nick was rarely invited for play dates. He had to sit at an allergy table at school, and I had to accompany him on all his school field trips. I had to sit outside all birthday parties and he had to bring his own food everywhere he went. So I started researching private practice oral immunotherapy. In private practice oral immunotherapy or OIT you eat microscopic doses of your allergen every day, increasing your dose in intervals. This desensitizes your body to the allergen. You go at your own pace with the dose determined by your doctor according to how your body handles it.
I started researching it more and got my husband and Nick on board. Nick was a hard sell. Telling him we are going to give you peanuts to eat now, after telling him they will kill him for 11 years was tough. I found an amazing OIT doctor an hour away and we had our consultation. Dr. Mark Weinstein at Hudson Essex Allergy in Jersey City, NJ is the man who changed our lives, and I will be forever grateful to him.
On November 2, 2017 Nick and I went in for his first OIT appointment. He was so brave. It was a six-hour appointment and he came home with his first two weeks of peanut flour doses. Every day we mixed a minuscule .3 mg of peanut flour into apple sauce and gave him his dose. He observes a rest period after eating his dose and that is it. We went back every other week for his dose increase or “updose” and would continue this trend until he graduated on December 1, 2018 after doing an 18 peanut challenge.
This kid, who almost died after a tiny bite of peanut butter, ate 18 peanuts with zero problems. Some people stop after one or three peanuts and are considered “bite safe;” then can eat food processed in a facility with their allergens. If the food they are eating accidentally contains their allergen, in Nick’s case peanuts, they would still be OK. Nick decided to continue on to what some call “free eating,” where he can eat basically whatever he wants. He was eating 12 peanut M&Ms every day.
After one year of this dose his allergen levels have dropped by half. Often people believe they are too allergic to do OIT but Nick was as allergic as you can be. OIT is made for those that are “super” allergic. Nick’s numbers were 100+.
Our life is so different now. Every other day Nick does his dose. That will eventually slow down even more to every few days and maybe to just once in a while to keep his body desensitized. He still carries his auto-injector because he is still technically allergic, just desensitized. He’s no longer scared of being around peanuts.
Most importantly right now, Nick can be just a kid. We can be just a family who goes out to dinner without calling ahead to see if it’s safe. Nick will bite into food without fearing it may be the last thing he ever does. He was at the point where he just wouldn’t eat because his anxiety was too high. He can eat Chinese food now, his absolute favorite. We attend baseball games where people openly eat and toss peanuts right next to him. He can eat ice cream again and not homemade. We can go to fancy ice cream parlors where there are peanuts everywhere, something he had never done.
The biggest thing of all is he can go be a kid, a teenager now, and I can let him. I can worry about if a kiss is going to break his heart rather than if a kiss is going to kill him.