Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.So far this combo is keeping her just having one a day, but it is totally unpredictable and …
Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, …
Sigh… so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she …
So two days into Depakote I got a phone call from Lily’s school saying she was sick. Bad diarrhea and dry heaving. No high fever and Lily’s nurse was pretty sure it was a reaction to the new drug. Knowing we were leaving and having Grandma in town I decided to stop changes. Put Topamax …
So bright and early this morning I met with Lily’s teacher, the counselor, her OT and ST for Lily’s IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it …
Lily Bug went back to school on Monday and so far things are going really well. I like her teacher and all the aides are the same, that is very comforting! They all know Lily.Unfortunately Lily has had a seizure every day at school, but Wednesday. Yesterday, Thursday, she had two before school, one at …
Sunday Lily had 5 for sure seizures and we think maybe one more because of the way she passed out on us out of the clear blue sky. So probably 6 big seizures that knocked her out. Coincidentally I upped the study drug that AM. I lowered it back on Monday and called the Dr. …
I never put Lily back on V. I lowered the Keppra to slowly wean, I wasn’t cool with the whole “just take her off”, and I lowered her study drug. Well I guess she did pretty well when I was away this weekend, but Andrew “accidentally” gave her a full dose of Keppra the whole …
Lily has been so off since that seizure she had on Wednesday. She woke up so happy on Thursday then I said how she was upset Thursday night. Then yesterday, Friday, her teacher called to say she is giggling for no reason and it is a different giggle. When she got home Friday she was …
Calm Amongst the Chaos 