Thursday, October 1, 2009

Seizures and wheelchairs


This morning Faith had a really bad seizure, about 5 minutes long. This is her first partial complex since Feb 17th. She had wakened up about 5:30 am and Carl had put her in bed with us. Then at a few minutes after 6 am, he woke me up saying that she was seizing. We started timing it and it lasted almost 6 minutes. I was so scared! We keep Valium in the house, to use if her seizures last more than 3 minutes, but after 3 minutes I could tell that it was starting to get better. This was her typical kind, affecting her left side, her leg, arm, eyes and mouth all twitching rapidly. Slowly her leg stopped, then her arm then her eyes and I knew it was going away. So we didn't dose her with the Valium b/c it will cause her to sleep for like a day, no joke! Her last dose of it, she slept for 28 hrs! Scared us to death!

I am sure that any of you whose children suffer with epilepsy, know what I am talking about when I say it is the most out of control I ever feel! Anyway, after 5 or so minutes, all of a sudden she sneezed and just sat up, looking around! It was so weird! She didn't appear to know anything had happened and seemed fine. We "tested" her on a range of subject like pointing to us, the cat, dog, giving hugs etc and she passed everything. She is not like most people with epilepsy, she never sleeps after a seizure (except with Valium). She went all day like normal, a bit grouchy but normal for the most part. I watched her like a hawk, though! We called the neuro and they reported that her Tegretol levels that were checked last wk were w/i normal range but on the low side of normal, 6.8. They said it was better than usual for her but we should go up, to hopefully ward any more off. So up we go! Right now, we get a huge monthly dose of Tegretol, so now we are going to be the largest official Tegretol clearing house in the eastern United States! LOL!!

Anyway, Faith got signed up for Girl Scouts, today. She is going to be a daisy! I am hoping to get her exposed to other little girls her age who are typically developing. Their first meeting is next Thursday.


BTW: Thanks to Ellen over at TO THE MAX for the Lemonade Blog Award! I will try to figure out how to link it up in the next day or so!


I am posting a picture of Faith in her super cool new wheelchair. And check out the bottom of my blog page for a short video of her and her cousin, playing.


4 comments:

Amy Genn said...

Hi Candace,
Scary stuff! I'm so sorry you have to go through that.
Just wanted to let you know that Exceptional Parent Magazine is hosting a conference, online, for free in November....about Seizures!
http://www.epliveonline.com/wcd_2009.html

Amy

Nat said...

Hi there! Lydia's surgery went very well and she is walking flat footed! She walks with her knees popping, but that is normal for kids with Down syndrome. I would recommend that surgery for anyone who has tightness. She did well with zero pain and was walking the next day with her casts! My email is natalieclyde@gmail.com so let me know if you have any other questions and let me know how Faith did. We had ours done at Shriner's in Salt Lake City. We think that Lydia does have a mild CP.

therextras said...

I'm glad you led with that great photo of Faith, because the seizure story was scary.

Thank Goodness she is all better.

Really, she is lovely.

Barbara

Beverly said...

Im sure that was so scary! love her new chair! I want to get Noah into boy scouts! have a good weekend.