"Suffering the Slings and Arrows of Outrageous Fortune"

Not giving up…

I heard back from the pediatrician regarding the Diamox. He says no, he won’t prescribe it. He can’t go against the neurologist. At least he was forthright about saying no; he could have made me schedule an appointment and pay the $25 co-pay just to tell me no. Although, I believe if I could just get the information, particularly the head circumference data, into his hands, he would be convinced. But, thus far, no one will even look at the information I have to support my request.

So, our options are narrowing. There is a doctor at the hospital that my husband trusts. She is a possibility, although I doubt any one at Reid would go against both the specialists and one of their own. Furthermore, we don’t want to cause her any trouble so if she says no, we will totally understand. But she has a personal stake in EDS and so she might be moved to help us.

Then there is an integrative medicine doctor not too far away – totally out of network though- who I have heard very good things about. He may be the kind of outside of the box thinker we need. I have no clue if he can help us, but he would at least be isolated from both Reid and Cincinnati.

There is the pain medicine doctor at Cinci, but I hold next to no hope that he will help us. I am sure he won’t go against Dr. Tinkle or the Headache Clinic. But, if we still haven’t found anyone to help us when we see him on the 14th, I may go ahead and ask/beg/plead for him to help. Until he says no, he remains on my very short list.

I thought of one more doctor to add to the list this morning and that thought has cheered me considerably. The neurologist we were seeing locally has moved on – I wish she hadn’t because I think she might have been willing to give the Diamox a try. She more or less gave up on us (before this theory had come out), but we might still technically be on the books as a patient at the office. If I can get an appointment with the new neurologist, and I don’t even know if he will see pediatric patients, there is a chance I could get him to at least look at my info. I firmly believe if I can get him to look at the head circumference data he will be hooked – that data is the key to the whole puzzle. I figure the only local doc who will go against the neurologist is another neurologist. One way or the other, we can call this a second opinion. If I need another referral, I can tell the pediatrician that I want a second opinion. That is not unreasonable. I think a neurologist might be a good option and maybe, if they let us try the Diamox and it is successful, he could even publish a case study so that we can get this theory into the medical literature.

I am not giving up. This is a battle worth fighting. My question to these doctors who are refusing to help us is, what would you do if it were your child? If your only option was another year of possibly pointless treatments and then irreversible surgery, wouldn’t you search for another answer? Would you be able to look your suffering child in the eyes and tell her you were giving up?

I am not a doctor, merely a parent who is watching her child suffer while the doctors twiddle their thumbs and chart the safest {for them personally} course. I defy any parent, particularly these doctors to walk in my shoes and make a single different choice. They wouldn’t condemn their child to more suffering, not if there was an iota of hope elsewhere, and I won’t either.

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