Hi Diane, I am so sorry to hear this about your son! I can’t tell you what is going on without taking a close look at everything, of course, but like you I would also be concerned about high intracranial pressure. We ran three different studies on this potential issue and I don’t know which study you were in, but in our last one we treated folks with Diamox to help us diagnose these difficult cases. Diamox can be used as a diagnostic tool (and my neurologist uses it as such with his patients, too). But a close evaluation is always required first. We see SO MANY cases where this IIH doesn’t present as typical, but we can usually find evidence of it with some sophisticated ocular studies and review of the brain MRI. If you get stuck, we offer evaluations/treatment for IIH at POTS Care. You can call us at 1-866-349-9905. We’d love to see you again! xxoo