Logen saw Dr . Thio yesterday. Dr Lui Lin Thio is the Director of the Pediatric Epilepsy Center at SLCH. He is a very knowledgable man who spent an hour and a half with us. He made sure we had all of our questions answered plus some! It was wonderful!!!
This is what we learned about Logen regarding sezures:
* We moved from a "seizure disorder" diagnosis to an "epilepsy" diagnosis
* Multiple seizure types- tonic/clonic, myoclonic, and partial
* His seizures are generalized {best he can tell}- meaning they do not start in one area of the brain (those are focalized seizures)
* Dr Thio *thinks* Logen may have "Medically Intractable Epilepsy" meaning medications may not control Logen seizures. He's had 2 drug failures so far. We are limited in medications we can use (above post)
* Possible candidate for Epilepsy surgery- however, since Logen's seizures are not focalized, the surgery may not happen. He considers this a possiblity b/c of the extensive presurgical evaluation. We may do the eval, but the surgery is not likely.
* Vagus Nerve Stimulation (click the name for its description)
* We will increase his Topamax to 15mg, 2x/day. We will begin weaning Keppra soon. Hopefully we can start that in 1 week. It will depend on how Logen reacts to the Topamax.
Suzanne's Baptism 1992
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Linda Anderson sent Suzanne this picture of the family on her baptism day
on February 15, 1992.
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4 months ago
Jess, I will continue to keep all of you in my prayers. Hugs!
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