Just wanted to give a little update. Unfortunately, Dr. T won’t prescribe the Diamox and neither will our pediatrician. The pediatrician’s reason is that he can’t go against the neurologist. At least he answered my phone query honestly and didn’t make me pay the $25 co-op just to tell me no. We have 2 more doctors we can ask, 3 if you count the pain management doc who we see on the 14th. But I seriously doubt that the pain management doc can help since I doubt he will go against the other specialists at Cinci. If the 2 local docs both say no, I guess I will have to start making cold calls to any local doc I hear anything good about. We don’t have money to travel cross country to do this, we already are looking at paying completely out of pocket to find someone willing to help us and with all of the medical bills we already have, that is a hardship by itself.
If I can just get the head circumference data into a doctor’s hands for 2 minutes, I believe I can convince him. But no one will even look at it. Frustrating is an understatement.
I definitely agree with Dr. Diana that if a doctor won’t listen, they can be fired. We will not go back to that neurologist. Ever. (Unless it is to gloat how Diamox helped, but probably not even then.) I am even considering finding a new pediatrician after this, although we have been satisfied with him for years. He is definitely on thin ice right now. The only thing saving him right now is that I know he is just covering his own butt as opposed to being truly hateful and nasty like the neurologist was.
I will also say that, although I strongly disagree with him on this matter, I think Dr. Tinkle is truly trying to protect his desperate, vulnerable patients from buying ‘snake oil’. So many of us are desperate and looking for a miracle. There are so few answers and even fewer miracles. I appreciate that he truly believes he is right, but, as humans, sometimes we can do the wrong thing for very right, good reasons. That there is a ‘good’ reason is no consolation when you are being harmed by that wrong action. And I think EDS patients could be harmed in droves if this theory isn’t even considered. I think we are going to have to prove him wrong, case by case, patient by patient. My dream is to take my daughter back to our next appointment with him and present him with a changed child, post Diamox. A child out of her wheelchair, able to do and benefit from therapy, headache free and enjoying life again. Sometimes, miracles really happen but we have to be open to them when they come our way.
Perhaps we should try to get the Diamox success stories written up as case studies by the supervising physicians? We have to get this info into the medical literature, somehow!
I probably won’t know if we have a chance with the last couple doctors on our list until next week. Will update when I know something.
Thanks for the support!