Peanut had quite a few seizures Monday, and even more yesterday. She slept through half her time at school, which is highly unusual for her. She does not nap hardly ever, and NEVER at school. So we figured she was having a bunch yesterday in between the ones they were seeing. This morning they called me around 10:30 to tell me that she had a tonic-clonic (grand mal) while in her gait trainer and stopped breathing long enough to turn blue. Then she gagged a lot and seemed tired. After that she had a lot of absence seizures back to back, so I went to get her. I took her home and she went into an absence seizure that lasted almost 4 minutes before I pulled out the Diastat. I gave it to her and called 911, and we earned ourselves another ambulance ride to the hospital. She had one more seizure almost 2 minutes long in the ER.
We started Topamax last Wednesday, and upped the dose this morning. We were supposed to up it again next Wednesday. Now we are upping it on Saturday instead, and putting her on Clonazepam for 10 days while we get that Topamax dosage up where we want it. Clonazepam makes her a sleepy, listless girl ... but it's worth it if it keeps the seizures at bay while we get that other med up. Hopefully that will do the trick. Right now she is on Keppra, Topamax, Neurontin, and the Clonazepam. Holy cow ... that's a lot for a kid who never even had seizures until this past August!
The neurologist was comfortable sending us home and told us to come back or call 911 again if she has another cluster. If so, we will be transferred via ambulance to the children's hospital that our neurologist works out of.
If the Topamax increase on Saturday doesn't start controlling the increased seizures, he said we will talk about a newish drug called Banzel. Anyone use this for their kids?
So we are home and Peanut is OUT. Diastat, tons of seizures, and Clonazepam will do that to a girl!
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.
12 comments:
Oh poor girl. I hope they get it figured out soon.
Oh Peanut I sure hope the seizures will stay away and the increased med works. Big hugs sweet girl
What. a. day. Poor baby (and Mama). Hope the new meds work, we'll be praying!
Sounds like Samantha when she started having her seizures. Her most was 17 in one day. We went through Diastat about 1 every other week -- and that stuff is crazy expensive! Now you can get a nasal spray (actually, I'm not sure about that. We were a part of a study a few years ago, and because of that we could have gotten it...much less expensive, but we already had a stash of Diastat...blah blah blah) Sammy has tonic-clonic as well, and a typical one for her lasts 1-2 minutes -- and it just makes me sad for her. I hope Peanut gets to feeling better and her medication gets worked out. We started doing cranialsacral therapy and that's when Sammy's seizures started slowing down -- right around that time we also switched to Topamax, but it seemed to be the therapy that had an effect. Each little kiddo is so different...if only it were all cut and dry. Praying for your little Peanut (and you).
Poor girl and poor Momma! Praying she had a good night! I hate seizures!!!!! I've never heard of that new drug. Hope something works for her soon!!! Love, Hugs and Prayers!!!
GOODNESS! That's awful. I'm so sorry. Is she on the special seizure diet? I can't remember what it's called?
Oh my, what a day for you!! I hope the meds continue to work for peanut.
Poor baby. So sorry she (and you) is having to go through this. I pray the meds do the trick without zonking her out.
Hope she is feeling better soon! :)
Praying you get it figured out... and that you both get some rest.
I just got your message on Skyes page and wasn't sure how to get back to you so I figured I will post my response here :)
I am glad you found her page, I love new friends, I need all I can get! PHEW.
As for her pump, we had the infinity and i didnt like it. The size was great but the way it works drives me crazy! :)
idk if you have fb but if you do, kayla messineo. feel free to add me!
Oh Dear! I am so sorry about her seizures... hope you find answers soon!
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