Thank you so very much Barbara! These are the things I thought I was seeing also. Which looks a lot like my own MRI’s.
I think I am going to have to start with getting her pedi to order labs to prove to the neuro ophthalmologist if she is too acidic for the diamox to work. Then ask him to change her Rx to the non extended release form. Then recheck her optic nerves after those changes and see if that doesn’t bring the swelling down. After that, go from there, with maybe having to try to find a neuro that works with kids that will actually believe those other things going on in her brain are at least partially to blame for the high pressure.
The neuro ophthalmologist she is seeing only goes by what he can or has read in studies. I wish there was something I could print and give him that would prove to him about the extended release not being as good and that acidity works against diamox working. When I tried to talk to him about how my potassium dropped off, he adamantly denied that this is due to diamox, stating that there was a recently concluded study that followed first time diamox users for 6 months and their potassium never changed. He said a lot of people/doctors have believed that potassium goes down with diamox use and that is why the study was done. So now that this study disproves it, labs don’t need to be done to monitor a patients potassium, etc. I told him my potassium didn’t drop till 9 months after starting taking diamox and I had to take supplements daily because of it. All he would say is “hmm”. A six month study is just not long enough to prove or disprove this. Argh.