We were supposed to start Keppra yesterday, but I have really felt uncomfortable about giving Ruby 3 strong anti-seizure drugs at once. There were multiple times last year when Ruby was on this many meds and I remember her being so doped up. She often slept so hard that it would take me 30 minutes to get her to wake up. We couldn't do therapy with her when she was like this. I am not willing to go back down that road. Mark and I have talked a lot about this and we really feel that it would be better to wean her from at least one of the meds first and see how she does before we add another med to the mix. I called neurology last night and let them know how we were feeling so I am hoping they will call back today with a plan. I know we have to fight these seizures with everything we have, but I feel that after a year of throwing different drugs at her and we need to start looking at how to do things differently. I have also read from several other parents whose kids have IS that Vigabatrin (one of the drugs Ruby has been on for a year) can cause low muscle tone which is what Ruby struggles with. Mark and I would love to see if weaning her off this drug helps her muscle strength come back. At this point-- what do we have to loose?
I would appreciate your prayers for these decisions that have to be made. I know I am not a neurologist, but I have done a lot of research and Ruby is my little girl so I feel like in this case I need to act on my gut feelings.
4 comments:
Absolutely! You need to act with your gut; you have those mama instincts that MEAN something. Praying with you!
I think you guys are being wise to use your instincts and to be upfront with the docs. You are her parents and know her best. You also have to advocate for her...sometimes medicine is just medicine...she also needs a life! You guys are in our prayers. Thanks for being an example of a strong yet honest mom!
Way to Go! I'm sure it's difficult to challenge the doctors, but you guys know Ruby best, and you only have her very best interests at heart. Praying for peace for you guys as you figure it all out. Love you!
I am totally with you on the decision to try to get off Vig. If I remember correctly, the Vig got rid of the clusters, but you still have the hyps....right? So if it isn't getting rid of the hyps, I would not want to keep my child on it longer than I had to. To me, the only reason to be on three drugs is if you know the first two are working well together in combination and you are close to SF. Then maybe I could see adding another. But if you don't think either of the drugs she is on are certainly doing anything, I think weaning one and seeing where things stand before introducing another is the way to go.
I know how frustrating IS is.....but it is even more frustrating when our kids are totally doped up and still having spasms.
I hope the Neuro's office agrees with your plan.
Thinking of y'all!
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