Faen

Since it's been a year since the last post I'm not sure if you're still looking for suggestions, but we've been in a similar situation the past year. The only difference is we got a tentative diagnosis from the er and cardio and Neuro are saying if she has it, there has to be something else going on too. However, some of her other doctors are completely dismissive. It's frustrating, especially when her bp drops super low, or she uses a wheelchair because she's to dizzy and lightheaded to walk or stay standing for more than a minute or two. My mom suggested that I talk to her insurance. Insurances will pay for you to go out of network(including out of state) if there isn't a doctor or clinic closer you just need a medical necessity letter from one of her current doctors, some even pay or help with travel, meals, and lodging. It's worth a shot if you still need a good dysautonomia doctor. Our issue is that we couldn't find one that would see pediatric patients, just adults. We now have an appointment with a pediatric dysautonomia specialist 300 miles away. Also, if she doesn't have an insurance case manager it might not hurt to inquire about one with her insurance, they can help you navigate the insurance side of stuff. Another thing is don't rule out other illnesses that cause autonomic issues like Addison's, autonomic seizures, thyroid, etc. My daughter's cardio even sent her to get her kidneys checked in case they were processing to much fluid out of her body. This is especially important if other autonomic systems are involved like breathing, bp drops that aren't orthostatic, extreme fatigue/can't be woken up, etc. You're doing the right thing by not giving up. Good luck momma!