We came back home on Wed., Jun 9. We were giving him 300mg of Valproic Acid/day, as instructed. John was pretty unstable on his feet, and quite irritable. It seems like his seizures are getting worse, if anything. I tried to go to work Friday morning, but I was a complete wreck and broke down trying to explain the situation to my bosses. Work has been completely accomodating, to which I am very grateful. I only lasted a couple of hours before I came home.
I expected the medicine to help him, but it didn't seem like it was working. So, I called the neurologist Friday afternoon for some advice. She was shocked to learn that we were only giving him Valproic Acid, and not another medicine (Tranxene). I guess he was on Tranxene and Valproic Acid in the hospital, but there was some miscommunication and they forgot to get us a prescription for the Tranxene. She said that abrubtly stopping that med WILL cause seizures, and he will probably get better once he's on it again. She was going to call in the prescription. When I went to pick it up, it wasn't there. It was frustrating, as John was having to endure all of these seizures because of someones mistake. I made some more phone calls and I was finally able to get the medicine the next day.
So, John was then on 300mg Depakene (Valproic Acid) and 11.25mg Tranxene.
John's 2nd birthday was on Saturday. We had a family party at my parents house. He was showing signs of his old self, but was still really out of it. We didn't even buy him any real presents, as we decided we would celebrate his b-day when we got this all straightened out.
The Tranxene didn't seem to help at all. He stayed about the same, seizure-wise.
We went for our appt. with the neurologist on Monday. She had looked at his 24-hour EEG and she told us it was bad. She said she had only seen 1 other case in her 20 year career that was similar to this. She also said that it did not fit into any of the known epilepsy syndromes. This came as some relief, as we thought maybe John had the dreaded West Syndrome.
I asked if John might grow out of the epilepsy some day, and while she said "Anything is possible", she told us not to get our hopes up - that the kids that grow out of epilepsy usually are controlled completely by the first drug they tried. Since John had essentially seen no improvement with 2 drugs, his outlook wasn't so good.
She explained to us that the Tranxene is highly addictive and usually only works for a few months, so her plan was to take him off of that after a few months and start another medicine. She was uncomfortable with him still having so many seizures, but she didn't want to put such a young kid on 3 medicines at once.
We also asked her about surgery options, and the ketogenic diet. Her answer was that we were "years" away from those drastic measures. That made Yoshie and I a little uncomfortable, as those were the only 2 "cures" that I had heard of. Why would you have to endure years of seizures before looking for a cure?
I told her (again) about our insurance situation, how we had to switch neurologists, and how we had to pay for this visit out-of-pocket. She felt sorry for us, and didn't even charge us!
