After Christmas, we assumed he would have a few months off again until his next episode. That was not the case. It's Friday, January 18th today. Last Saturday night (the 12th), we had the missionaries over for dinner. An hour later, Charles has 8 seizures. Sunday he had like 150 tremors in his legs. We took him Skyridge to get an IV dose of Keppra (per his on-call neurologist). We thought that would eliminate all seizures as it has in the past (he's had the IV dose of Keppra once before). Alas, it did not. The experience at Skyridge was awful too. They had to poke him 3 times till they get the IV going, he was SO upset about it. In addition, we forgot to bring the Cars DVD with us and/or pre-download it to the Kindle, so he was devastated until it finally downloaded. I know, that sounds trivial, but when the poor kid only wants 1 thing while he's going through such an awful experience, we like to try to accommodate :-) Anyway, the next day, Monday morning, it all started again - including a tonic seizure, several small seizures and many many leg tremors that make him lose balance. So, we decided this time, to take him back to Children's Hospital since they have better and more experience with kids. After 2 hours there, we got no-where, other than the recommendation to add a morning dosage of his daily medicine. Before, he was on 5 MG of Clobazam, and now they changed it to 5MG at night and 2.5 in the morning. Tuesday was not much different...he had 35-40 leg tremors while we were at Sam's Club shopping. Poor kid. It scares him no matter how many times he's experienced it. It wiped him out and he had a LONG nap. Wednesday was a little better, and Thursday was even better (yesterday). We had a scheduled neurology check-up with Dr. Levisohn (his primary neurologist) at 3:15. We discussed MANY things...
1. Is it possible he doesn't have epilepsy, but something else (since his symptoms are so un-like any other patient)?
2. It is possible if we took him off all meds completely, we he be any worse off than he already is?
The Dr. agreed that maybe it's not epilepsy but rather a movement disorder. He recommend I go home and log all seizures on a calendar, including dates/times and TYPEs (tonic, myclonic, and just leg tremors) AND to try to capture them on video - that will be very difficult obviously I don't have a video camera ALWAYS on me and when they are happening, I just want to comfort the poor kid. The Dr. also said we could try weaning him from his meds.
So that night, since he had been doing well, we all went to the Gym as a family. Right after we checked them into the kids club, he went down to the ground. The care taker there said oh he's just playing...I said maybe but I better check. Sure enough, the seizures were back AGAIN. We promptly left.
NOW TODAY...So this morning his leg tremors were back again. Then, as I was taking the kids to school, he had a big 15-20 second seizure in the car in his car seat. He was shaking, bent over to the side, couldn't speak, etc. I pulled over and tried to video it but just caught the very end where he's just weak and limp and exhausted. He's napping now and has been for 2 hours...between the seizures and the meds, he's exhausted during the day, then stays up late at night. Its a vicious cycle that's also probably not good for him, but HOW DO I FIX IT??!! I was able to capture the leg tremor in the kitchen this morning and will try to upload that.
I LOVE THIS LITTLE BOY SO MUCH, he's just so cute and sweet I can't understand why this is happening and how and why the doctors don't know what to do for him. My job in life is to keep him safe and make him a priority. I want so desperately for him to at least get relief from medicine, but it's not happening, it's getting worse! Tomorrow would be a full week of seizures. The Dr. recommended a 3-day stay at the hospital which sounds atrocious, but I would do it except it would probably be the 3 days he's seizure free and they would get NO helpful information out of it. The Dr. put the orders in for it, but it can take quite of a bit of time to actually get it scheduled, etc.
