After years of being severely peanut allergic, my daughter is now eating two peanut M&M's a day, thanks to a clinical trial, Children's Hospital of Philadelphia, and a peanut patch.
Ever since my daughter, Sophia, now 12, was diagnosed with a peanut allergy at age 9 months, our family has stayed away from all peanut products. As hard as it was for me, I banned my favorites—Snickers, Reese's peanut butter cups, and M&M's—from our home. Every parent of a peanut-allergic child knows that even plain M&M's carry the dreaded label, "May contain peanut."
But this year, this Halloween was different for our family. For the first time, Sophia grabbed bags of plain and peanut M&M's from the neighborhood's trick or treat offerings. After years of being severely peanut allergic, Sophia can now eat two peanut M&M's a day, all thanks to a clinical trial, the doctors and nurses at Children's Hospital of Philadelphia, and a peanut patch.
I've written before about coming to terms with my daughter's peanut allergy. As a parent, I learned to scrutinize ingredient labels, inquire about cross contamination at restaurants, and send in treats for school parties. As a pediatrician, I was able to empathize with other parents of kids with food allergies after I had to administer an Epipen to Sophia once, when she developed hives and difficulty breathing after eating a supposedly nut-free cookie.
But it wasn't through any medical connections that made me call the allergy department at Children's Hospital of Philadelphia in the spring of 2013. A friend's son had recently been diagnosed with peanut allergy as well, and the doctors there had asked him if he'd like to participate in a clinical trial for the peanut patch. CHOP was recruiting patients to participate in a world-wide study to test the effectiveness of the patch—essentially a sticker placed on the child's skin daily to deliver microamounts of peanut antigen into the bloodstream in the hopes of eventually desensitizing the child to peanut. I called and spoke to Nurse Practitioner Megan Ott, who explained that if Sophia's blood and skin tests demonstrated true peanut allergy, she could enter the study.
Sophia's tests more than qualified her to participate. Her blood test for peanut was off the charts. Her skin test was horrifyingly huge. At Sophia's baseline food challenge for the study, she developed abdominal pain and lip swelling after a mere 5 mg of peanut. She developed a hive and to stop her reaction, the medical staff gave her epinephrine. I was shocked to learn that one peanut is about 250 mg. That meant my child required life-saving medicine after eating 1/50 of a peanut.
That was the beginning of our 3-year clinical trial. The first year was particularly tough: We didn't know if we were in the placebo group or whether we were actually getting peanut in the patch. I had a hunch that I was putting an empty sticker on Sophia, though, when her skin didn't react to the patch in the way my friend's son got small patches of hives around his patch. Sure enough, it turned out that we were in the group that received no peanut in the patch.
Things looked up the second year when all the study participants were given the same amount of peanut in the patch —250 micrograms of peanut antigen. While I was thrilled, Sophia hated it. It was itchy, uncomfortable, and it caused red rashes and hives on her skin under and around the patch. Each night I would replace the 1-inch patch on her skin and rotate the location to minimize the irritation. Some days Sophia didn't complain, but there were others when she begged me to take it off because of the itching it caused. Often I would appeal to her to do it for Dr. Terri Brown and the nurses at CHOP, all of whom were rooting for her.
While the patch was a daily bugbear for Sophia for those two years, the two food challenges at the end of each year of the study turned out to be truly challenging in every way. One week she was fed a chocolate paste without peanut and the next week she was given the paste with graduated amounts of peanut to see how much she could tolerate. We didn't know beforehand which week would be the peanut week. The nurses had to place an IV in Sophia before each food challenge in case she needed fluids or resuscitation (scary possibilities I tried not to think about), but what was even worse for Sophia than the pain of the IVs was having to eat the chocolate paste. She rapidly associated it with nausea and vomiting, and getting her to eat it was a struggle. The doctors and nurses stopped any challenge once Sophia developed a hive or vomiting, and I even found myself hoping she would quickly react so that we wouldn't have to force feed her the chocolate anymore.
After our second year in the study, Sophia could eat about 100 mg of peanut before vomiting and requiring epinephrine; by the end of the third year, Sophia made it to 440 mg of peanut before developing abdominal pain and vomiting. It wasn't good enough to keep us in the study—she would have had to tolerate more than 1200 mg to move on to the next phase. But Dr. Brown and the nurses had us go back to their office the following week to see if Sophia could start on a daily regimen of about 125 mg, or half a peanut, a day. When it came time for Sophia to eat half of a peanut M&M, nurse Courtney asked if I wanted to take a picture. Now I wish I had, but at that moment, I was so anxious that I couldn't even look at Sophia putting the half M&M in her mouth. There was something about her eating an actual M&M that made me nervous. This was real, and more than anything, I wanted her to be able to pass this challenge.
Sophia ate that half a peanut, and we sat in the office for two hours so she could be observed. She was fine. Dr. Brown told us that Sophia would now continue to eat a half a peanut a day and then, with time, her "dose" would be increased. I thought back to how Sophia reacted to 5 mg of peanut just a few years ago, and I asked Dr. Brown, "What if she goes home and I give her the half a peanut and she has a problem at home? What will I do? You won't be there to help us!!" Dr. Brown gently reminded me that I was a physician, and indeed, that my husband was one too, and even if we weren't physicians, Sophia would be fine. And then she added, "Now, Sophia, anything that says 'may contain peanut' or 'made in a facility that processes peanuts' is fine for you to eat." Those words stopped me in my tracks. It hadn't even occurred to me that we wouldn't have to worry about cross-contamination labeling anymore. At the 7-Eleven outside the office, Sophia and I celebrated by buying Twix and plain M&M's.
On our way home that night, Sophia called my husband, rejoicing, "Guess what, Daddy? I'm eating plain M&M's and you have to keep cutting the peanut ones in half for me!" My husband, a surgeon, happily brought home a surgical scalpel so he could meticulously halve peanut M&M's.
Just like Dr. Brown said, Sophia was fine eating her half a peanut a day. We gradually increased her to one peanut, then a peanut and a half, and now she's eating two peanuts a day. It's amazing how those two peanuts a day have changed our lives. Now we can have peanut products in our house again, and Sophia doesn't have to worry about reading labels for cross contamination.
We're not sure if Sophia will ever get to the point of being able to eat a peanut butter and jelly sandwich, but the fact that we don't have to worry about her suffering an anaphylactic reaction from traces of peanut is a miracle to us. I am so grateful to CHOP and the peanut patch. I saw an ad the other day for CHOP, proclaiming, "Hope lives here." I hope that Sophia's story and her experience with the peanut patch give hope to all who suffer from food allergies.
The peanut patch continues in clinical trials and is not on the market yet. If you're interested, discuss with your child's allergist any food allergy clinical trials available in your geographical region.
Jean Goh, M.D., is a pediatrician in private practice in North Brunswick, New Jersey. She is an attending physician at Robert Wood Johnson University Hospital and St. Peter's University Hospital, both in New Brunswick. Dr. Goh is the mom of two middle schoolers.