Tuesday, December 6, 2016

Aw nuts

When our 5 year old daughter Emma was six months old I received a phone call that changed everything about the way we would raise her. We learned she had a potentially life threatening peanut allergy after some tests were run in attempts of figuring out the cause of her eczema. I think it took us years to actually process this information in its fullness. We didn't have any allergies or know anyone with peanut allergies. And how could Halloween be complete without Reeses peanut butter cups?! I implore you. 

We've become quite skilled at carrying "safe" foods for her wherever we go and reading food labels obsessively. She has handled it all beautifully, never complaining or showing any signs of food related anxiety. I've gotten used to checking her face after meals just to be sure no signs of a reaction are evident. She's never ingested peanuts as far as we know, but has broken out in hives after eating hummus (she has a garlic allergy as well), and had an itchy throat after eating raw snap peas (we now know she has a pea allergy as well). 

I had heard of a treatment called Oral Immunotherapy from some Facebook message boards and I always dreamed that perhaps someday we could pursue it for her. Being a mama is filled with enough concern without adding in the wild card that your child could accidentally take a bite of the wrong kind of food and it could end their life. 

I prayed that an opportunity would open up close to where we live to pursue OIT. I decided to call a place 3+ hours away from us and at least set up a consultation and see what happened. Thankfully we never had to make that drive (people drive and fly many miles to pursue this treatment) because when I called, the girl I talked to said they were opening an office near Seattle! I was beyond thrilled. I didn't think we would get in until 2017 because of existing patients who would obtain first priority, but I received a call a week before we were set to trek down to the farther location, asking if we'd like to come in the next day to the new office on its opening day! 

Our Emma has now been ingesting an incredibly small amount of peanut every day for over 2 months! We began at .1mg of peanut and we are now up to 20mg and will return tomorrow for another updose. When we reach 100mg we switch from a peanut powder cellulose mix to actual ground peanut. Mind blowing. 

Our appointments are usually weekly and consist of the (amazing) staff mixing her peanut powder with applesauce, dosing her, and then waiting for 20 minutes to see how her body responds. We've ended our updose appointments for reasons like itchy skin, slightly elevated blood pressure, and a small hive on her cheek. There's no set schedule for each patient, it's completely dependent on how each person responds, which I so appreciate. Emma LOVES going to her appointments, partly because she gets to be spoon fed applesauce (like royalty), and also they have Shopkins in their stash of toys there. Jackpot. 

We do her peanut dose at home every day at 3 o'clock and she's supposed to observe a "calm time" as we call it for 2 hours prior and 2 hours post dose. She's done beautifully with it so far. 

She's attending a one day a week co-op this year for Kindergarten while I homeschool her the rest of the time. 

Homeschooling is not my gifting, people. Just so we all know. 

Emma would much rather be in a classroom setting (she longs deeply for her glory days of preschool and Miss Deborah) and I would much rather not have to bribe her (not that I do...) to do a phonics worksheet. My Pinterest boards make me look like a pro, but the reality of our days are far more based around Leap Frog videos and PBS. Not that my kids watch TV.   

After we complete peanut OIT we'll begin something called SLIT (Sublingual Immunotherapy) for her other allergies including cow's milk, eggs, sesame, garlic, and snap pea. It's incredible that this exists at all and the idea of Emma being able to walk into a restaurant, bakery, grocery store or birthday party and be able to eat ANYTHING is beyond what we can fully comprehend. But we plan to throw her a birthday party EVERY day after she officially graduates from this treatment. It's reasonable :) 

No comments: