Wednesday, September 15, 2010

Update

Tonight Oliver has had more seizures :( He didn't have any (that I saw) until 3:30. This morning he was at pre-school and they didn't report anything unusual. We contacted our dr. after the first one at 3:30 and we emailed him a video of the seizure. He was encouraged that it was short and self-limited. He said to keep doing what we are doing for right now and email if anything drastic changes. He said it would take a few days for that old medicine to clear Oliver's body. He said once we get Oliver stable we'll need to do an ambulatory EEG which means he'll wear electrodes on his head for 3 days to try and capture a seizure when it happens.
After we called the doc. Oliver had a few more seizures and he threw up. We think he threw up because he was running too hard (we were playing super high energy hide and seek) but, really who knows...it is always difficult to tell what is "normal toddler/kid stuff" and what is related to TSC/seizures.

1 comment:

eamwalters said...

Hey Stephanie, This is Elizabeth, Michael's mom from MMO. We have a neighbor family who's daughter (1 year old) who has a seisure and infantile spasm disorder (not TSC). They have loads of experience dealing with UNC hospitals and have traveled to New York and to Boston to talk about treatments. They are super nice and I know they would be happy to discuss anything that may be helpful to you as you head towards your Boston trip. Call me/email me if you'd like their contact info: 399-5180, eamwalters@hotmail.com