We met with the neurologist yesterday and he wasn't thrilled to hear of her having so many generalized tonic/clonic seizures lately. We don't normally have this many (grand mal) so it was definately out of the norm for her. He always says he thinks "it's a progression of her epilepsy" which is concerning.
We are weaning off the Topamax, since it didn't help her seizures and in fact seemed to make them worse. Plus all she does is sleep and whine while on it. We are starting Trileptal in it's place, to go with the Keppra we are still on. He explained that Trileptal works for focal seizures, which is what her EEG showed last time. Then they spread to secondary generalized ... so if we could stop the focal seizures, we should be in turn stopping the grand mals.
Cross your fingers. He says we are getting to the end of his expertise, and the end of the meds available. We will be moving on to UCLA Epilepsy Center soon. Our neuro is private practice, so there's no one else there to consult with or get a second opinion from. He said he thinks we will need to start discussing vagus nerve stimulators or brain surgery. Ick.
Does anyone have experience with VNS? He thought that the patient has to be 60 pounds to get one. We are barely 30 pounds, and not getting bigger any time soon. Does anyone know if that is true? I can't find information online since it is only "approved" for kids 12 and up.
Thanks in advance. And thanks for always reading our seizure blahgs. ;)
7 comments:
I wish I could help with the surgery stuff. But I do know that Faith has a similar situation in that her partial complex often start out then move into generalized ones. So after yrs on just Tegretol she is now also on Keppra..both drugs are good for two different kinds and that seems to be working for her. Kind of a double action. Several other blog friends and I are all on the "seizures Suck" band wagon and we keep saying we need to start a "seizures suck" group blog! I know it is so frustrating for you and terrible for Peanut. We do know a little girl who had a hemispherectomy last year after seizures were consuming her all day. She has been seizure free for over a year and I think she just turned 2 or 3.
Nice play on words!.....Blahgs! :)
You must be so sick of this! I know that a couple of years ago, when Gavin was having tons of seizures and nothing would work, it really played with my emotions! The good news is we did find our "magic" coktail and I pray that you and Peanut find your soon too! Gavin still has an occassional seizure, but I can handle that.
I have no info on surgery or VNS. Hope you get some answers soon! Love, Hugs and Prayers!!!
That picture is SO sweet. Love her hair. Have fun this weekend - let me know how it is.
I am so sorry things are getting worse with Peanut's seizures. I hate hearing she may need surgery. : ( I am always praying that you are able to find the right meds and methods to put an end to the seizures.
I am so glad you were able to enjoy some time with Jax and his family, that is awesome!
Hugs...
My daughter is on Trileptal for focal seizures, but I am still puzzled. We are going through a mystery with seizures and EEG puzzles right now.
I have several high school students in my school who have VNS. It works wonders for one student! Stops the seizure right then and he can go on with the day! The other two aren't quite as responsive to it, but it doesn't seem too invasive once it is in there.
Topomax brings back baaaad memories for us. Oh! What a pain seizures are! I'm so sorry!
Where did Peanut get her sunglasses? Are they rx?
love, Bree
Topomax made Junior's seizures worse also, we hated that med.
I have a friend whose child has had the VNS for several years now and I know she isn't 12 and was quite small when she got it. I will email her and see what info she can share.
so sorry the seizures are worse, will keep Peanut in our prayers.
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