"Suffering the Slings and Arrows of Outrageous Fortune"

Been doing a lot of ranting – it has been good to get it out of my system. (Ok, it might not be totally out of my system, but I won’t be ranting in this post.) Underneath all the ranting is disappointment that verges on despair.

The sad reality is, as the dust settles from this fiasco, we are back to square one. I have a child who is very ill. If I am right (if Dr. Diana is right) my child’s brain is under too much pressure and that is not a good thing. If unchecked, eventually there will be brain damage. At some point the damage will be irreversible. We must do something to address these symptoms.

We have been to the headache clinic and they would not/could not help. I have been in contact with Dr. Tinkle. He will not prescribe Diamox.

I respect his opinion, which is that the tachycardia and postural intolerance is due to ‘typical’ POTS (my phrasing, not his), that the blood vessels are floppy due to the connective tissue disorder and cannot respond to the brains signals. If he is right, Diamox would not be a good choice – it is a mild diuretic and could dehydrate Em, causing her symptoms to worsen. I guess theoretically it could be dangerous, although we are intelligent enough to prevent her from dying and if I thought it was truly risky, I wouldn’t suggest it.

BUT, if I am right, if the tachycardia is a result of pressure on the brain stem and is just one symptom of high pressure, the Diamox could relieve many, if not all of the symptoms. OVERNIGHT. Trying the Diamox for a short time would not preclude surgery or even The Migraine Protocol and certainly doesn’t pose a grave threat.  So, I still don’t quite grasp the objections.

I respect his opinion and his expertise, but I respectfully disagree. I do acknowledge he could be right – after all, he is one of the foremost EDS experts in the country. But my mommy instinct tells me that he isn’t and I felt this way long before we first saw him. It has seemed clear to me since January that the autonomic dysfunction symptoms actually overlap with the neurological symptoms. So, while I deeply respect him and adore him, I have to agree to disagree. I confess, I am feeling that pull we all feel when dealing with an expert – the urge to do as you are told because he knows best and you are just a mom. Toe the line, shut up and listen.

Sorry, can’t do it. Won’t do it. Not with my kid’s life on the line. I am a customer of the medical system, not a slave of it. I am the parent and have been given this precious life to protect and ultimately am responsible for this child. No one else is responsible. I have to make the decisions I think are best, even if that means going around the expert.

I don’t want to go around Dr. Tinkle but I feel that I am being forced to. I will ask our pediatrician to prescribe it and monitor her so it is safe. (Again, if I thought it was truly risky, I wouldn’t be contemplating it.) Will he cooperate? Who knows. Maybe, maybe not. Depends on which personality walks through the door. I hope he will. If not, there is another doctor – an integrated medicine doctor not too far away who comes highly recommended. He might be the one to help us. I just need someone with an open mind who can see the whole person who is my child and I won’t stop until I find that someone. I only need about 2 nights of Diamox to know if it will work. I’d really like it to work, but if it doesn’t I will be satisfied with simply having tried it. If it doesn’t work, fine. We will go back to plan A. Which will totally suck, but if it is our only option, so be it.

What now? We keep pressing forward, towards the goal. I am not concerned with power plays, personal space or grudges. I really don’t care about the letters behind someone’s name. My only agenda is to find a way to make my daughter better. I won’t be swayed from that goal.


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