I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He originally said not to allow anyone change Em’s medications so we will see what he has to say.
Needless to say I am extremely frustrated. Any suggestions?
Hi Beth, I know you and I have emailed, but for the folks on the forum, I wanted to respond with a little something. As we said, when you walk into a doctor’s office with objective measurements of a drastically increased head circumference for the first 15 months of a child’s life and the doctor STILL won’t look or listen, I see some doctor shopping in your future (who’s been there? ha). It is just not worth the stress and aggravation, in my mind. As patients, it is important to keep an open mind also, but no doctor should think a cookie-cutter recipe should work for all patients — period. If you need a second opinion, Dr. Clair Francomano understands the pressure theory, and is usually open to discussing a Diamox trial. I believe she’s gotten some great feedback from that. Ditto with mast cell treatment (which is related to hydrocephalus, I believe — watch for Part 2 of the theory). So, if you need help with dysautonomia, Dr. Clair may be the doc to go to… Just a trend that I’ve noticed… Has anyone else noticed this? Thanks, Beth!