It seems Ruby is feeling a lot better already; she hasn't had a fever since late Thursday night and she was only a little fussy yesterday. I think she is on the mend; we go back to the doc early next week to check her lungs and then hopefully she will be in the clear.
We talked to neurology yesterday, and they do not recommend that we wean Vigabatrin. So, we have agreed to start Ruby on Keppra, in addition to her other meds. If we get her to the full dose and she is still not improving, then we want to make sure we wean her from something, especially before we start the ACTH (the steroids) again. She has had two doses of Keppra so far; she did not sleep well last night, but I can't blame that on the Keppra yet. We will have to have an EEG before we know if the Keppra is helping because her spasms are so subtle that I don't always recognize them anymore.
Here's hoping we are once again headed in the right direction.
4 comments:
bummer about three meds... praying for peace for you guys and that her next EEG shows improvement.
I have been following your blog and reading about Ruby and was wondering if you have ever considered chiropractic care, I know some people don't like them, but I have included an article about a study they did on a 6 month old that was on the some of the same meds that Ruby was/or is on.
http://www.idealspine.com/pages/Peet.swf
"feet for the path..."
First of all...I am so sorry to read that the seizures returned. I know how devestated you must feel.
Also, I was wondering if Ruby is on vitamin B6. A lot of neuros will suggest B6 while on Keppra to help with the mood changes. Sophie became very moody almost immediately after starting Keppra.
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