We did allergy skin testing for Eva last week for the fourth time. If you follow me on Instagram, you already know it didn’t go well.
Like before, we went through the lists of potential allergens, picked the ones we wanted Eva to be tested for, and then she got scratched with little plastic picks covered in allergen mixes. Isn’t that awful? I always tell her to be brave and hold still for the nurse but it makes my skin crawl just watching her have it done. I know it’s painful and it’s hard for her to hold still for 15 minutes while we all wait for her skin to erupt in little welts but she did it. No complaints, no tears. She just…did it.
Results: everything is the same or worse. We added new tests this time since she’s bigger and has more room: sesame, white fish, and shellfish. She had reactions to all of them but the shellfish was the worst. We were then warned that shellfish anaphylaxis in particular can be violent and fast so that’s awesome. And the welt for horses is still the largest welt I’ve ever seen so that’s great for my shrimp-fishing, horse-riding family. I suppose it’s a good thing that the Bay Area is too expensive for us to move there because apparently Eva is ALLERGIC TO IT.
Little trooper held it together until we got in the car. Then she very tentatively asked if she was still allergic to everything. I think she might have already known the answer to the question from listening to us talk at the clinic, but I guess she had built it up in her mind that she might not have any more allergies and she really pinned her hopes on that. I told her that she was still allergic and there were things we were going to have to start looking for because her test showed new allergies and she started to cry. Not sniffly crying or tantrum crying, but straight out broken hearted sobbing. She said she thought they might tell her she didn’t have to be so scared any more. I had absolutely no response so I just let her cry it out.
You know, today is the anniversary of the Sandy Hook shooting. I read some of the tributes and thought about all of those families struggling to celebrate the holidays each year. We are insanely lucky that Eva is healthy and she grows and grows and there are all sorts of things we can do to keep her safe. That’s a parent perspective, though. I think it’s harder for her and we’re coming to a point where I need to remember that it’s not going to just be us parents dealing with scary hospital visits while we shuffle the baby around from test to test. She’s having this whole experience that I don’t understand because I didn’t go through anything like that when I was a kid and I don’t really know how to help her, so we’ve decided we’re going to start taking her in to chat with someone about her allergy anxiety. Hopefully it will help. We’ll see.
Sidenote – someone sent me an email asking about our allergy book after I took a picture of Eva laying next to it at her appointment. I thought I’d share a little bit about it since it’s made keeping track of everything a lot easier.
The allergy book is a standard binder with sheet protectors full of everything related to Eva’s allergies, asthma, and medical records.
It’s chronological and when I say everything, I do mean everything. It has the test results, lab orders, doctor summaries, emergency plans, hospital release forms, backup prescriptions, etc. I also printed out large photos of skin tests, signs of reactions, photos from hospitalizations, and some comparisons for what Eva looks like in emergency situations. The photos in particular have been helpful for caregivers who aren’t sure what to expect.
I’ve made it a rule to add to the book whenever we have a doctor’s appt or ER visit and I always ask for copies of whatever paperwork they’ve come up with, even if it turns out to be a small reaction or a visit with no big updates to her meds. Part of the motivation behind the book is for my own sanity, so I can quickly find something like a testing date or a reaction number if I need to. Another part is so we can have her whole history (including the visuals) on hand if we need it quickly when we’re at the clinic or hospital.
We’ve switched allergists so it’s helpful for our current allergist to see the forms and photos from the prior clinic and even though he probably has them on file somewhere, it’s nice to be able to reference them when we’re mid-conversation. It’s also been helpful for Eva’s pediatrician to keep up with what’s coming out of the other clinics and for the emergency room doctors to see her whole history at a glance, including prior ER visits.
Little tip – if you start an allergy book, put a little envelope or zipper pocket in there to keep all of your receipts for your prescription meds. After the Auvi recall recently, it was so handy to be able to have the receipts and dates right there to get them switched out! It’s also a good place to keep your $0 co-pay cards if you have them.