At age 1 Haven had some zucchini bread that my friend made - I didn't know it had hazelnuts in it. We found out about 10 minutes later when Haven developed hives and blisters that covered her body for days. We ended up getting an epi-pen and keeping her away from nuts.
Well it's been 6 years and we're very strict about nuts and her staying away from them. She has been asking me to test her with peanut butter but I just don't have time to do an extra day at the hospital. So I have refused.
The other night she and her dad were making scones and decided they would use dried cherries and golden raisins in the scone mix since the blueberries would smash. Well during the cooking process she and dad snuck a few cherries and raisins. It wasn't 15 minutes later that Haven broke out in to an extreme rash that turned in to little green blisters. I immediately double dosed her with Benadryl and emailed her Oncologist and Pediatrician.
This was within 15 minutes of eating the cherries and right after the Benadryl.
She had already noticed the blisters before we knew about it and was hiding down the hall scratching the blisters open. Then decided she would try to fib and tell us her arms had been like that since yesterday and there was no need to go to the hospital. Only problem....she has parents that watch her like a hawk and we know every spot on her. This was sudden.
The only blister not scratched open by my daughter...because I was able to stop her.
To my surprise (which really I should've known since he's emailed on weekends before) - Haven's Oncologist wrote back within 30 minutes on a Friday night around 8pm! He doesn't have to...why should he even be checking emails - he has a family!!! BUT HE IS AWESOME! He wrote back immediately and was very concerned. We already had Haven signed up to do a RAST test on her next Oncology visit and we had just declined a renewal of the epi-pen the week before. We haven't had any incidences.
I pretty much sat and stared at Haven all night. Mostly watching for any changes in breathing - especially since she already has a breathing issue with this syndrome - and for any lesions around the mouth. We made it through the night but her pediatrician got in touch with me next. She has a new epi-pen and is now set to see an allergist to find out exactly what she is allergic too. I did some research and thought it might be possible that she is allergic to sulfa. But Oncology came back and informed me that her Bactrim that she was on for 2 years contains sulfa. So we know that isn't the issue.
Noted the cherries did say it is packaged in a facility that works with tree nuts! Honestly I have never worried about that since nothing has ever happened - now I read and question EVERYTHING!!!!!
In January I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven's special on Mystery Diagnosis. On Friday, May 27th, Heather passed away leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies.
