Thursday, October 03, 2019

Well we’re all zebras. Now what?

So while all of this Ehlers Danlos talk is going on, the older kiddo is having a huge amount of medical issues. She’s got allergists in 2 counties. We’re at the emergency department so much that the doctors and nurses remember us. You do not want to be the parent that walks into the ED and the nurse running triage says to your kid “I remember you. Did you have to epi again?” You don’t want to be the parent who is terrified  every time you see the school on the caller ID  because there’s a good chance they called 911 again for your kiddo. So that’s going poorly. We just can’t figure it out. Allergic reactions. Low BP. Fainting. That leads to steroids. Epipens. Meds and more meds. Elimination diets. Allergy testing. (It was all positive. ) What is going on? Someone mentioned the trifecta. EDS, MCAS and POTS. I googled. Some of it fit. Some of it didn’t. We saw a cardiologist. He said POTS wasn’t a real thing. She was fine. Allergist suspected MCAS (weird condition where you have allergic reactions to things you’re not allergic to) plus new food allergies and oral allergy syndrome. Mcas is hard to test for. So that was a maybe.

Anyway this was all going on when the younger one saw genetics. It was a long appointment. We met with a genetic counselor. We saw a geneticist. Family history. Diagnostic criteria. He was diagnosed with EDS. Off the record i was told i have it as well. The doctor looked at this huge bruise i had across my whole forearm. “What happened?” “Oh. I got an IV.” “Uh huh. We know where he gets it from. “   (Bruising and poor sound healing are also part of this condition. )They wanted me to come back for my own appointment and bring back any other children I have. Within a month we were all diagnosed. Older one was the least bendy. But they talked about comorbidities. Like POTS. And how she seemed to have all the comorbidities.

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