Tears of joy. Public school kindergarten is a full year away for Bubba, but Big Girl will be starting next week. I just received an email that went out to all families announcing that the classrooms will now be nut-free and the school will no longer be having bake sales. Students can still bring nut-containing products for their own consumption in the cafeteria, but no nuts may be consumed in the classroom including during class parties.
Bubba says thanks too
I didn’t have to have those fears. I didn’t have to fight that fight. An allergy parent who came before me, dozens I’m sure, successfully advocated for our children so that they can be safer while at school to learn. I have spent years benefiting from the allergy parents who came before me. Parents who blog their allergen-free creations, parents who fundraise to support ground-breaking research, moms who turned allergy apparel into a small business, parents who started support groups and created posters to share with others. Never doubt what parents can and will accomplish in aid of their children. It’s allergy parents that have changed the entire discussion around and awareness of food allergies. I just wanted to say a teary and heartfelt thanks.
No restrictions. No needles. No exclusion. The chance to start school with no food allergies. Big girl passed her sesame food challenge today. We are VERY VERY excited for her to shed some of her anxiety and fear. Given how worked up she was about this challenge, I was incredibly impressed with how brave she was. She took her first bite of sesame crunch candy with no hesitation.
However, in the minutes that followed, her anxiety crept in and she complained of a belly ache and itchy ears. She had no visible symptoms. The allergist suggested that we give her a fake dose to check the placebo effect. Sure enough, on her second ‘dose’ (this one sesame-free) she again complained of a belly ache, so we decided to press on with the real food challenge. Eventually she relaxed and she no longer complained about her belly. Instead her grins got bigger and her confidence grew that she would pass the challenge. Sure enough, after what may be the longest food challenge ever (we were there for four hours), SHE PASSED. Big girl gets to start school in a few weeks with no 504 plan, no epi-pens, free to share snacks and eat birthday treats. Basically what I would wish for every child.
It will remain a mystery what caused Big Girl’s hives this spring. Most likely it was viral hives. In the off chance that it was the poppy seeds on the bagel, rather than the sesame, that caused the reaction we will be food challenging her to poppy. This time we will do it at home. We talked it through with the allergist who was very supportive given that she tested negative for poppy and has now passed her sesame challenge.
Note: Only after sharing this post did it become clear that Big Girl’s success may offer false hope to some sesame-allergy parents. Big Girl was probably never actually allergic to sesame. Her tests were all negative and she had previously safely eaten sesame. Her one-time ‘reaction’ was probably not a reaction at all. By comparison, her younger sister Bubba had an anaphylactic reaction upon first exposure. Bubba also tests positive via blooding testing and SPT. We have no plans to food challenge her.
Big girl has her sesame food challenge tomorrow. She has a LOT of BIG feelings about her food allergy (if there is one). Ever since she got hives after eating an Everything bagel, she has asked a bazillion questions about whether foods are safe for her. Like if apple juice is safe. Or if the dinner I just made for her is safe. Foods that she eats every day and has eaten since her reaction – are they safe?? We should be more patient. We should be more understanding. And we’re trying. But it has been hard to cope with her irrational fears of a food that she would be hard-pressed to come across. And which doesn’t come into our house, btw, because Bubba is also allergic to sesame. Talking through her fears and explaining the kinds of foods that might contain sesame didn’t seem to help. In fact, the more we talked about her food allergy, the more she wanted to talk about it. You’re wondering if this was an attention thing? Well I did too, but there really seemed to be this current of anxiety running beneath all our conversations. So we got the book What to Do When You Worry Too Much to help Big Girl (and this Allergy Ninja) deal with anxiety. We loved it. Big Girl loved her special time with me doing the workbook activities. I got a hard Mama lesson; it makes Big Girl sad when Mama gets mad because she’s scared. Ouch. And we have both learned a lot of new strategies for coping with anxiety.
Tomorrow will be a big day for us. I don’t really know if Big Girl is allergic to sesame. She could react. And that would very very scary for my emotional little girl. We decided to go ahead with a food challenge because:
- She had no known food allergies prior to getting hives
- She had safely eaten sesame many many times before getting hives
- She tested negative for a sesame allergy via blood testing and skin-prick testing (SPT)
- She will start public school in a few short weeks and the potential to start school with “no food allergies” is a blessing and luxury I want to be granted to this sweet girl
- And if I could eliminate this fear from her life, I would
We’ll be using ‘Sesame Crunch’ candy for the food challenge
It seems like she should pass the challenge based on all this right? Well, the big question marks are because it’s possible she tested negative because she’d had antihistamines only two days before her testing (a testing no-no because it can give you a false negative on a SPT). Also, sesame is notorious for false negatives in allergy testing. For example, Oleosi, one of the major sesame allergens, cannot be tested for via SPT. And the the largest sesame food challenge study to date concluded that “…a positive sesame-specific [blood] test and positive sesame SPT are not good predictors of true sesame allergy as determined by the gold standard test of an oral sesame challenge.”
Soooo crossed fingers and prayers are welcome. I will keep you posted.