EEG Results and Next Plan of Action

Gracie had an EEG this morning to see how well the Acthar (ACTH) steriod medication was working to eliminate the infantile spasms. Our pediatric neurologist read the EEG immediately and met with us directly after. We got good news and bad news. The good news was that Gracie's EEG did show some improvement. The bad news is that there was not enough improvement and it was felt the ACTH won't give us the results we need. Over the next month we will gradually decrease the ACTH injections and eventually we stop those meds. We will be putting Gracie on a new medication call Vigabatrin. It is not FDA approved in the United States, so we will need to have it imported from Canada. Since it is not FDA approved, our insurance won't cover it, so it will be out of pocket, but a small price to pay for Gracie's health. Like most medicines, this one will have some possible side effects. It will make her sleepy and perhaps a bit dizzy as well. It can also be toxic to the eye and can cause irreversible damage to peripheral vision if on it long-term, so we will be watching Gracie's vision very carefully and will have that monitored at Mayo Clinic as well.

We did get a confirmation through DNA testing that Gracie has Sotos Syndrome. We'll learn more about this later next week.

Thank you for the continued prayers.

Lisa, Jeff, & Gracie