Monday we see a neurologist at the Headache Clinic at Cincinnati Children’s Hospital and I will share the Driscoll Theory with him, with the hope that he will agree to try Em on Diamox. I have plenty of evidence to back up this request – the theory itself, Em’s head circumference numbers, the growth chart with the numbers plotted out, her MRI and her symptoms. Right now the unknown factor is whether he is the type of doc who is receptive to ‘guidance’ from patients and their parents or if he is the type who knows it all and needs no help.
Realistically, I can’t fathom a refusal to try Diamox – in my opinion, the evidence is overwhelming and the path obvious. But, I just don’t know and that is frustrating. (I am the type of person who wants to know what to expect, who wants everything nice and predictable and falling into place. This kind of uncertainty is rather unpleasant for me but I am trying to deal with it in constructive ways. Like giving myself an ulcer and driving my family crazy!) Anyway, I have already said that, if he refuses to allow Em to try Diamox, I will politely inform him that I will find a doc who will prescribe it. I don’t want to have to go ‘Mother Grizzly’ on him, but I will if necessary.
It is extraordinarily frustrating to have to be the expert for your child. But that is the reality we face as we live with EDS. Even the experts don’t have all of the answers. We are the ones to live with this condition, day in and day out.
Specialists are wonderful and have life saving knowledge. But how many diseases and conditions do they need to be aware of? Thousands. We have 1 that we need to know about. (Actually, 1 primary and a bunch of secondary conditions but they all spring from the EDS so it is sort of the same thing. Just a longer learning curve.) I have spent the last year and 4 months learning everything I possibly can about EDS. Not because I have nothing else to do, but because someone has to know how to approach this invader in our lives – to know what to expect and be prepared for what might happen. I have spent the last 8 months learning everything I possibly can about Chiari, Cranial Instability and now the Driscoll Theory so I can help my daughter get better.
There are very few answers for EDS patients with neurological symptoms and, before the Driscoll Theory, none of them were very appealing. The thought of my child going through several neuro surgeries that might not be very successful and may not even relieve her symptoms was, frankly, horrifying. So, when there is suddenly a reasonable explanation for the cause of the symptoms AND a treatment that can help overnight? It is a no brainer to me. In fact it seems like Divine Intervention!
Now I just need to convince the neurologist of that! But, I have faith that it will go well and we are on the brink of life changing events. I will post after we get home on Monday and know more.
If you want information about the Driscoll Theory, go to http://www.prettyill.com and watch the videos and read the theory. It is groundbreaking stuff!