So, we went in June to Boston, saw Dr. Castells, and, come to find out, I'm not just a crazy over protective mom that is making things up!
We got our diagnosis of MCAD, until we can do further testing, which is what I'm in the process of trying to do right now! THey recommended we get an endoscopy because of all of her GI problems, a skin biopsy to see if her TMEP is related, and, because she'll already be under, a bone marrow biopsy. She also needs a CT to make sure none of her organs are enlarged, and a full workup for POTS. I need to find a doctor here who knows about mast cell disease, how to test, which biopsies to do, etc! I want to go to one doctor, and have him facilitate the procedures! I can't find a doctor anywhere, everyone I call won't accept pediatrics, (she is just 6!) or won't accept Medicaid. With myself having to quit my business to take care of Zoe full time, we're on a one income household right now, there's no way we can pay out of pocket! Does anyone have a recommendation or know of a patient advocate I can contact? I've been at this since the end of June... I'm exhausted, and my kid is beyond sick at this point. We need answers, and a new medicine protocol, our current one isn't working. Thank you, anyone and everyone for your help, I'm out of ideas, any and all are appreciated!!