Yesterday, after two full school years of pre-school minus one week, I finally got the phone call I'd been dreading since the first day: my son had had an allergic reaction immediately after eating his snack. Until now, every aspect of his schooling had far exceeded my expectations. His teacher has taken him from learning his alphabet to beginning to read short words. His therapists are top notch, much better than I had thought I'd find in the public school system. The Kid has thrived in this environment, and both his teacher and the two aides she's had have been extremely vigilant in protecting him from food allergens.
On the phone, his teacher said that The Kid had broken out in hives on his face and neck. She described them as "really horrible" with white spots in the center like blisters. They had given him Benadryl and the hives were starting to fade. At that point, they weren't sure if he had eaten something or if it was a contact allergy, since he was scratching and rubbing his neck when they noticed the reaction.
By the time I reached the school, the hives were much more faded, but still visible, and my little boy was pretty drunk on the Benadryl. The teacher and aide had searched the room and rechecked the snack and discovered that the pretzels he had eaten were "manufactured in a facility that also processes peanuts." They had read the label, but had stopped after reading the major allergen labeling about wheat and soy ingredients. (I have mixed feelings about the labeling requirements for the eight major allergens, but I'll save that for a different post.) I took him home, fed him lunch, and watched him like a hawk for the next four hours in case of a secondary reaction.
I didn't realize how much the day had stressed me until my husband came home and I promptly took a nap/fell into a coma. After dinner last night when the Benadryl had worn off, The Kid and I talked about the reaction. This is the first one he's had in about a year and a half, so his language skills have advanced enough for me to get more of his perspective. He described the hives as "buggy bites," which surprised me. (We usually say either bugs or insects, so I'm not sure where he got the phrase.) He also said that they hurt, rather than itched. Then we talked about what he has to do if it happens again.
I got out the Epi-Pen trainer and we practiced using it and I explained how it works. In case of a reaction, his job is to find a grown up and ask for help as fast as he can. If the grown up doesn't understand or listen, he is to point to his medic alert bracelet and just ask for help and not to take no for an answer. (The Kid's language skills are excellent, but he has articulation problems that sometimes make his speech difficult to understand.) I am terrified that a teacher might just tell him to sit down and be quiet when his life is literally on the line.
After talking with his allergist's office, I've decided to make some changes in his medical instructions for next year. We've controlled all of his reactions with Benadryl until now, so I had given the school instructions to use that unless his breathing was affected, in which case they were to give the Epi and call 911. Next year I'm going to have them immediately use the Epi-Pen in case of reaction, rather than the approach we use at home. The location of the hives on the neck and face especially worries me, since I suspect that if The Kid is exposed to even a slightly larger amount of peanut, he could have a reaction that might stop his breathing. (Just typing those words makes me shake.) I'm also only going to allow food that has been brought from home or had the label checked by my husband or me.
I was already worried about beginning Kindergarten. Now I'm terrified. It's been long enough since The Kid had a reaction, that I was starting to relax. Not anymore. I'm just hoping that yesterday's reaction will at least help us prevent another one.
8 comments:
Oh I'm so sorry! I hope your little guy is feeling better and I'm glad that the reaction wasn't worse.
Our action plan for the school states to always start with the EPI. Our allergist felt that trying to get people who aren't familiar with allergies to determine when to use it vs. Benadryl could have a bad outcome.
I think the changes you are making will help protect him even more next year. But I agree with you. Kindergarten scares me to death!
I really understand that this is scary for you. I also 'see' it seems you are doing a beautiful (and calm) job of teaching your child to help take care of himself with other. Feel good about that.
Gosh, I am so sorry to hear what happened. How horrible. I am glad to hear he's ok.
We start preschool in the fall. It is very scary. Our preschool provides snack for all the kids (they say it is nut-free), but I was planning to ask that they make an exception and let us provide our child's snack. Thank you for sharing what happened. Your post today confirms for me that that my desire to provide our child's snacks is completely justified.
I hope you and your family will have a restful and uneventful weekend.
Wow. Definitely the phone call I dread as well. I too have been blessed with a wonderful preschool setting and teacher for my daughter. But even knowing how diligent they are, I know mistakes can happen. I'm glad they seemed to handle it well and you did too! It sounds like you used it as a good learning experience for you and him. I'm so glad he is ok and it sounds like you're making some good changes to his emergency plan.
Thanks so much to all of you for the kind words.
Janeen, I think you are absolutely right about the action plans, and I'm just glad I didn't learn that the hard way.
HalfCup, I may sound calm, but there was some serious butterfly action on the inside!
Jennifer, it's ok to be a control freak about your child's food. That's our job as allergy moms. Just be a nice control freak. :o)
Sue, My son's teacher has been extraordinary, and to be honest, I felt bad for her. She's had some extremely allergic kids over 28 years of teaching, and I think this was the first reaction she's had. If he was going to have one, I'm just glad she was there to handle it.
Libby
Sorry to hear about your harrowing day; my tree-nut-allergic child is about to finish the first year of preschool, no reactions yet. I've been supplying my own snack for her, because although the school is "nut-free" and parents are given a list of appropriate snacks, I've noticed alot of leeway (m&m's, etc). I totally know how you feel about fearing the next step, kindergarten. Good Luck with him!
PS. we're going the epipen-first route too. too risky otherwise!
My anaphylactic to soy, peanut and peas "little" kid is now in college. Each reaction is such a blow and exhausting emotionally. But, I also see them as gifts that make my child safer if he survives, which so far thank goodness we have been blessed to have experienced recovery. Mine is prepared to give himself injection. We practed for about nine months when I realized that no matter what I did or said the school teachers and nurses and dining managers really are freaked when a reaction happens and "control" the child delaying the epi injection as a result. They "wait and see" and really put the child in danger. It is too loose away from home as to what others may not only feed my child as well as to what they may do in a reaction. I never let anyone feed my anaphylactic child. He always had his own snacks in the school available to him and when he was in middle school he had a snack and fruit and extra food in backpak for those late after school activities...and there were times I jsut arrived with a safe meal like pizza for him, or a thermos of soup at the middle school or high school when he stayed late. Now in college he is completely dependant on dining for his meals, but he is NOT DEPENDANT on anyone for response to reaction. He learned to self inject by practicing on oranges with expired epis along with myself and his dad around the kitchen table....Dad did not fare very well and destroyed several epis in the process!!! It lead to my child saving himself later that year injecting himself and calling 911 which is his plan. He has had three reactions in school. The last he knew was the worst....he carries two epis. Make them independant. Our children cannot eat food prepared or "screened" by anyone other than themselves when they are older or their parents. And as soon as possible they should have the practice and "license" to use the epi on themselves with first reaction if they are anaphylactic. My son delayed epi for about ten minutes with that last reaction...and it then quickly overcame him...he knew he was very close to dying, but the ambulance came although the epi did not much to reverse symptoms because of that delay. Since then I have told him to not hesitate to use the second epi...even if the EMTs are there. He got into ambulance feeling like he was dying and the EMT was fumbling with the IV to get more meds into him. I told him he needs no one's permission to treat himself with what he has to do so no matter who is there "helping" him. Each reaction is a gift preparring our children and us for the next one.
(((((HUGS)))))
I've totally been there--although I was on the other end. I remember one experience very vividly. I was in fifth or sixth grade and a friend of mine had what looked like a large fig newton. She gave it to me and I took a couple of bites before I knew I was in a ton of trouble. Fortunately I had some (illegally carried) benadryl in my backpack and popped some immediately. It was touch and go for a while. I learned later that the food had black walnut in it. To this day every time I hear or think of black walnuts, I can feel my throat closing and remember how my throat and mouth felt.
I really should have had an epi growing up, but never did. I'm glad I'm still alive! Your son is fortunate to have a mom who is on the ball. My mom still kept nuts in the house and regularly made my siblings peanut butter sandwiches.
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