After that, we went and got the RAST blood test done and learned that Jonah was allergic to milk (as we’d suspected), eggs, peanuts, tree nuts, legumes, and sesame. The allergist warned us that hummus was probably one of the worst possible foods he could be exposed to because it is basically made from chick peas (a legume) and tahini (highly concentrated sesame paste). Jonah was given his own prescription for an EpiPen Jr. and our journey began…
We were vigilant and managed to avoid any more severe reactions until last summer, when Jonah was 4. We took him and his sister to a birthday party. It was our first time dropping him off at a party but we felt ok about it because the birthday mom & dad were family friends who we’d eaten meals with on countless occasions and they were very familiar with Jonah’s allergies. In fact, when we dropped the kids off they even went out of their way to mention that the cake served would be safe for Jonah and listed the ingredients. Due to the mid-afternoon timing of the party, we didn’t even anticipate that any other food would be served. An hour and a half later, we decided to return to the party a bit early in the hopes of socializing a bit with some of the other parents. From across the room, I could tell that something wasn’t right with Jonah. His face looked blotchy and he was coughing a lot. One of the other moms approached me and said, “I’m a little concerned about your son – he’s been coughing like that ever since they ate. I knew he has food allergies so I looked at his plate but all he was eating was grapes, pretzels, and potato chips.” Immediately I went to the hostess to retreive the Benadryl and EpiPen kit we’d left for Jonah. Although she was a healthcare professional who in theory was trained to recognize signs of anaphylaxis, I honestly think that in all the chaos of the party, she hadn’t realized that anything was going on with Jonah (fourth valuable lesson: no one, no matter how well they know your child, is ever going to be as vigilant as you).
I gave Jonah some Benadryl while my husband went to check the ingredient list for all the party snacks. He came back holding a “Sea Salt and Cracked Pepper” potato chip bag that listed “whey (milk), buttermilk, and butter flavor” among the ingredients. We sat around for a few minutes waiting for the Benadryl to kick in, but pretty quickly realized that Jonah was getting worse, not better – he was covered in hives and his breathing was becoming shallow and raspy. My husband said, “I think we need to go to the ER” and we started running towards the car (we were about 5 min from the nearest ER so concluded it would be faster to drive vs. calling an ambulance). Just before we got in the car my husband looked at Jonah and said to me “I think he needs the EpiPen.” I crouched down, holding Jonah in my lap, pulled the EpiPen out of my bag, removed the safety release, and jabbed it into his thigh. He started screaming right away. At the time I didn’t specifically recall that the instructions said to hold it for 10 seconds, but instinctively I did. I could feel the adrenaline rushing through my own system – I was literally trembling as I pulled the EpiPen out of his thigh and put it back in its case. He just kept screaming, which I actually took to be a good sign, since it requires a certain amount of airway flow to scream, right? He screamed the whole way to the hospital. I noticed that although his symptoms didn’t seem to be getting any worse, he definitely wasn’t instantaneously better as he had been the first time he got the EpiPen.
As soon as I carried him into the ER, the triage nurse directed me straight in. Immediately he was given a second dose of epinephrine (fifth valuable lesson: some reactions require a second dose – or even more!) They also started IV steroids and an albuterol nebulizer. Pretty soon he was stabilized but they kept us there in the ER for another 6 hours just to be sure (sixth valuable lesson: rebound reactions can occur – something that was never specifically told to us after Jonah’s first reaction). During that time, I decided to dispose of the used EpiPen in the “sharps” container. That’s when I realized that it had expired five months earlier! (seventh valuable lesson: monitor those EpiPen expiration dates! Our allergist later told us that unlike many medications that retain much of their potency well beyond the expiration date, EpiPens rapidly lose their potency and the one I gave Jonah was probably only about half as effective as an unexpired one)
After a good night’s sleep that night, Jonah woke up feeling fine and asking if he could still go to camp the next day! He kept taking oral steroids for a few days, but was basically as good as new. All of this has made us much more vigilant. We don’t drop Jonah off at parties at all any more – one day we will have to revisit that but right now when he’s only 5 it’s not unusual for parents to stay. We don’t assume that anyone else is checking labels or knows how to recognize an anaphylactic reaction. I monitor the expiration dates of all of our EpiPens much more carefully. I joined a local support group for parents of children with life-threatening food allergies so that I can learn more and get support from others who’ve been there. And I’ve already begun working with the school where Jonah will attend kindergarten next year to develop a plan for keeping him safe – and included – at school.
We just re-did Jonah’s RAST and learned that he’s not showing any signs of outgrowing any of his allergies anytime soon. This was discouraging news for him – and for us. Because food allergies – and the possibility of an anaphylactic reaction – will be part of our lives for the forseeable future I want to learn as much as I can to help Jonah, myself, and other families coping with these issues.