Sunday, January 3, 2010

Lauren is doing very well during her awake hours. Whenever she goes tosleep she is having lots of short grandmal seizures. Last week she was having about 3 an hour and I was sure we would be back in the hospital. Dr. Tuxhorn had us give a high dose of an emergency med before bed for 3 nights. So things slowed down for a couple of days. But overall she is doing really well, but this happens with every new med we try on her. This new med (felbatol) is suppose to work better with intractable epilepsy, so we will give a few more weeks and see. The list is pretty short of new meds to try, so I really hope this will be more promising. Our next step will be to try steroids in pulse therapy-3 days on then 3 days off (hoping to minimize some of the side-effects).

2 comments:

Jennybell said...

I've wondered why they don't try steroids earlier. Simply because it seems to be the first line med for infantile spasms.
Having a break from seizures during the day should be nice, but I bet you want to sleep all day to make up for all the lost sleep at night! Don't you wish they made some kind of EEG cap they could wear at home and you could just send it by phone or something to the Dr.! So you'd know what was happening up there!

Anonymous said...

I finally got a google account so I could comment. I always read the blog but can't comment without an account.

Sounds like you guys had a rough holidays.

I pray things will get better.

Love, Rodney