Jenelle had a follow up with Dr. Shields today at UCLA. The last time we saw Dr. Shields in July, he put her on a new medication called Vimpat. We had hoped it would help decrease her absence clusters. Today, I told Dr. Shields about her recent 9 minute grand mal, and the 4 minute tonic seizure she had a week ago (I didn't mention it in an update previously because it stopped without intervention.) We decided that the Vimpat is not working, and that we should move onto a new drug called Banzel.
The drug Banzel is specifically FDA approved for children with Lennox Gastaut Syndrome. Instead of waiting to wean off Vimpat, we are going to add Banzel to the drugs she is already taking (Felbatol and Vimpat.) Remember, one thing at a time, so we know what works and what doesn't. We'll see him again in 3 months, or sooner if we have a bad experience with Banzel.
That is all for now. I will keep you posted.
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6 comments:
Thank you for the update. I have been waiting all day for it. Hopefully this new medicine will work. Celia
vimpat did nada for lily but made her super sleepy.
lily is on banzel, has been for quite awhile and it helps. not miraculous, but helps :)
i hope for janelle is it miraculous!
My child is also using Banzel and it works well for her before her recent weight gain/growth. I especially like that fact that it is tailored for those with Sodium Channel anomalies.
I haven't visited here in the longest time but made my way via other seizure kid blogs.
My daughter was on Banzel when it first came out and it didn't work for her, unfortunately -- it actually made her worse! We are, ironically, considering Vimpat now -- do you attribute the large tonic episode to the Vimpat?
May your little one be seizure free -- soon!
My Gods, 9 minute grand mal?! I would be a horrible mess. My 20 yr old son has grand mals in his sleep and has had them since 2005. His have never topped 3 1/2 minutes and even those are agonizingly long. I would be beside myself at 9 minutes. I came to your site because my son was just prescribed Vimpat after very unsuccessful treatments with Depokene, Keppra and Dilantin. I'm skeptical about the Vimpat and I haven't heard much success with it.
Prayers for your daughter and for you.
Vimpat is not a drug that is used ALONE. It's meant to augment other anti seizure drugs. Vimpat often works well with low dose Topamax, Klonipin and Keppra. Ask you doctor. God bless you all and may you find hope and healing.
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