We heard from neurology yesterday and they officially gave us the results of the EEG from last week. The bad news is that she is having some very subtle spasms and she is in hypsarrhythmia. The good news is the other couple of weird movements she is doing are not seizures. I really thought they would tell me that she was having multiple types of seizures, but it looks like we are still just fighting the spasms. This is a relief. The neuro wants to start Ruby on another drug called Keppra. If this doesn't stop the spams over the next month, then he would like to start her back on ACTH (the horrid steroids). We see him on Oct. 8 so then we will talk about whether or not this is a good plan. I want to do all I can to get her out of hypsarrhythmia, but the steroids were so hard on our family. Medically she handled them okay, but I don't know if I am ready to go back to 3 months of living with a fat, crabby and sleepless little girl. I guess we will cross that bridge when we come to it, but for now we will try Keppra. If anyone of you out there have tried that drug with your kiddos before, I would love to hear about how it went and what side effects I can expect.
We are praying this will be the one that stops them for good!
3 comments:
We are praying for you guys! I'm glad to hear that it's just the spasms and we'll be praying that the Keppra does the trick! Let us know if there's anything you need. :)
Kelli I pray you don't need to go back to the steroids again... praying that the Keppra will work!
Praying that this new drug works!
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