Hi! I finally have some good news to report. We had our appointment with the local neurologist this morning – actually he is a physicians asst. He was awesome – he listened, understood, asked questions and prescribed Diamox with no qualms. In fact, he couldn’t understand why no one else would prescribe it. He was perfectly willing to be guided by the results of the clinical trial and follow what had worked for others. He even praised me for being an advocate for my kid! He is my new hero.
So, we have a month of Diamox to try and we will see how it goes! Will let you know how it goes!