Re: Phenobarbital and Gelastic Seizures
Our daughter Katie saw a regular neuro for 14 years, who tried every med and combo of meds in the book. We finally said, ENOUGH. And started our search for an Epi after reading a post here over 2 years ago. Katie did end up having a left temporal lobectomy in June and has been seizure free since. We started the testing process in May 2003, lobectomy in June 2004.
So, there is hope! I don't know specifically about the type of seizures your son has, but an Epi is the best place to be. It made a HUGE difference in Katie's treatment course. She went through a year of tests before becoming a surgical candidate. It also went to 3 surgical board reviews before being given the thumbs up.
If you click on my board name, a listing of choices comes up. Click on the one that says "all posts by this member" (or something like that). If you click on that you can read all of my posts all the way back to last winter as we were preparing for this. All of the tests, the exploratory surgery Katie had to had back in April, before the BIGGEE...etc. Look under all of the main titles that talk about surgery, finding a board member (that one has A LOT of info in it), etc.
If you have any questions, don't hesitate to ask. Katie is 16 and has had Complex Partial E since the age of 9 months. All my best to you and your son...I remember that age well, just before kindergarten started. I thought, how can I send Katie off? How can she not be around ME? Who will take care of her? You have to have faith that they will be ok...
p.s. our Epi said their goal is to get to patients sooner (for testing of intractable E)...at an earlier age (if they are surgical candidates) so they don't have to go through all the years of seizuring and failed meds that Katie did. Come to find out, Katie could have had surgery 5-8 years ago already. She was diagnosed with Mesial Temporal Sclerosis, and conclusively through the pathology report.
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.