Follow by Email

Thursday, August 30, 2012

Mr. Twitchy Pants

Kadyn's seizures seem to come and go like seasons. Every 3 or so months he just goes all out with a huge grand mal. Then normally he is back to normal by days end but this one took over his whole body and left him weak on his right side.

But today Kadyn's smiles are back. He is happy, playful and back to his normal. His right side still a bit weak but it's getting better. He is making noise, but I haven't heard him say any words he knows yet, but maybe his brain still needs time to heal. 

Neurosurgery isn't rounding with us anymore, neither is Neurology as there is nothing for them to do. His shunt is fine, working great and Neurology knows I won't put him on any medication. He doesn't react to medication very well and I refuse to go down that road again. 

Kadyn is suppose to start school on the 4th. Hopefully he is feeling well enough to wear he can. I need to figure out something for him to wear his first day.

All in all this storm has passed, and although I can not predict the next one we will be ready. 


Jenny said...

Have you thought of trying a different epilepsy med that you havent tried yet? A bad seizure that could have been prevented with meds could be serious threatening. I have epilepsy myself and I can't imagine not being on medication. He would make great strides and wouldn't suffer with those huge seizures. It's hell to have them, and it took many different trials with meds to find the right one. I reacted bad to the other ones just have to find one he does well with.

Sara said...

We have actually tried over 10 seizure medications, Kadyn has had the same reaction on all of them. He seizes longer, and worse then not being on medication at all. He is on Ketogenic diet. Which since being on them instead of daily seizures, he may have 1-2 seizures every 3-6 months. Being on Meds Kadyn was having 10+ grandmal seizures a week that last 1-2 hours.

Jenny said...

That's terrible! I am glad that not being on medication is helping so much. I didn't know he reacted that badly. Sorry about my suggestion I should have asked the difference first.

Sara said...

It's ok. Medication can work good for some, but for my son it caused his seizures to increase even more. If we didn't try so many including the newest one out there Onfi then I would be trying most likely. Thank you though for the advice. :D