Monday, October 20, 2014

As I was saying in my last post, it has been awhile since my update on Jonah. At one of the Mayo visits we met with Jonah's dietitian and neurologist. Like I said before they increased the fat to carb ratio to see if we could eliminate the nightly tonics he was having after falling asleep and the occasional tonic clonics he was having in the early morning in his sleep. I do believe that the increase has helped but not eliminated them. In the last month he has had 2 tonic clonic(grand mal) seizures in his sleep which isn't too bad but I would like him not have any. Actually, since I started writing this update a few day ago, Jonah had one drop in the bathtub followed by an absent and then 2 days later he had an absence while sitting on the couch. Hopefully those were just breakthrough seizures. IVIG is scheduled again for this Saturday.

As far as our insurance paying for IVIG we are still in that battle. They denied the Mayo's claim to which we were really hoping they wouldn't. I'm starting to brainstorm fundraiser ideas. If we had to pay out if pocket for Jonah's treatment plus all of his other bills the cost would be over $37000 a year.

No comments:

Post a Comment