Friggin seizures. I hate them. It's hard to believe that we have only dealt with seizures for 9 months. It feels like forever! We've cycled through meds like crazy, with no relief.
Peanut had a pretty big tonic/clonic (grand mal) seizure on Friday night. Lacey, Jaxson's mom, was over for dinner with her awesome family. She got to witness Peanut seizing, that's always fun. She woke up through-out the night with numerous seizures, but they all stopped in under 2 minutes. Dang if a 2 minute tonic/clonic doesn't seem to last forever though!
Yesterday she had weird spasm type seizures, they look like infantile spasms. Last night she had a 4 minute absence seizure. This morning she had a tonic/clonic while I was getting her dressed. We headed out to a birthday party and she slept through half of it.
I just emailed the neurologist. The Topamax/Keppra combo is obviously not working. Besides the seizures, she is grumpy and moody and tired on the Topamax. I hate it. The neuro mentioned trying Banzel next, so we'll see.
I'm really nervous because we are leaving first thing Thursday morning for the Convention for Children with Microcephaly. It's over 100 degrees there right now, and heat definately triggers Peanut's seizures. I'm taking all of our extra Diastat's, and researching where the nearest Children's Hospital is before we go. PLEASE pray that we have an uneventful trip!!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
4 comments:
Love, Hugs and Prayers!!!
I'm sorry that stinks!! I will pray for you to have an uneventful trip!
Maggie has started to have some pretty long absent seizures. Poor Sean came home from work and Maggie was in the middle of it and it made him sad that she didn't even notice he came home. I'm not sure why she has started to have more and longer ones lately but maybe its from the heat as well. I will have to keep an eye on that.
Good luck to you at the convention!!
Ask about Lamictal and Klonopin. They seem to be the right combo for Ivey. And, they do not make her as groggy as Topamax.
g.
Oh, that sounds so frustrating. Loving you from afar and praying for a smooth and VERY GOOD conference.
Post a Comment