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Friday, July 1, 2011

Topamax to the Max

Finally talked to a doctor today now that we figured out my cell phone wasn't ringing and every call was going straight to voicemail. The doctor we usually deal with was out sick, and the consensus of two other doctors was not to go up on two meds at once (I understand where they are coming from, but the small increase in Keppra cut the ticking seizures down by more than half, and Topamax doesn't work on those seizures, and vice versa). They wanted to go up on Keppra, but we have done that before and it just didn't work, only made Levi super crabby.  He's at 5 pills twice a day of Topamax, and they allowed my request to go up to 6 pills twice a day, but that is the final increase and we are at the maximum amount of Topamax that he should have.  So if this doesn't work we will need to start a new med.   My prayer is that this will work and STOP the seizures!  They are much reduced, and seem to be even better since the shunt adjustment Wednesday.  I believe this jump in Topamax will take them away!  Please pray with us that this increase is what's needed to finally stop the Infantile Spasms!  Hope everyone has a wonderful holiday weekend!

2 comments:

  1. I got to your page via a post you wrote on Amy Bishop's page about her daughter, Caitlyn. I, too, found Amy because I felt compelled to talk to her. My youngest son, Easton, had a seizure out of the blue when he turned 11 months old. The seizure lasted 24 hours. Best guess is the HHV6 virus, but still unsure whether or not that was the cause. We also don't know if it will happen again. Easton has a developmental delay now from the seizures and we do therapy twice a week. I read this post in particular because my son is on Keppra and Topamax as well. I'd love to talk to you about it sometime as it is hard to find people who have "been there." I'm on facebook, Shannon Linderer Zanger or you can contact me by email at shannon_zanger@yahoo.com. I will pray for continued progress for Levi.

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  2. Hi Shannon! What type of seizures does Easton have? How is Easton doing now? Levi also has a developmental delay. He receives PT, OT, and DT weekly and vision therapy twice a month. He is functioning at the level of a one month old, but he's coming along nicely! I would love to talk with you! I added you on facebook. I look forward to chatting with you!

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