Kate is stable and has been seizure free since Thursday.
She is on phenobarbital and a new drug called Topamax. The Neurologists are comfortable letting us go home with these drugs. Since the phenobarb works well to control the 'scary' seizures, we're comfortable doing the trial and error with the other drugs at home. Hopefully the Topamax works to control her shaking seizures, but if not, there are apparently a number of other drugs to try. Let's keep our fingers crossed!
We spoke to the Neurologists at length this morning. While we don't have an official diagnosis, they are using the 'catch-all' term epilepsy. They think it is likely that her genetic abnormality is related, although exactly how they are not sure. They also do not believe her surgery was the cause of the seizures, just the trigger. Apparently, people with seizure disorders often have seizures when triggered by some sort of stresser (I'd say her surgery was a pretty hefty stress). Even if she never had her surgery, she likely would have had seizures at some point.
We have an appointment with Genetics on Tuesday here at UCSF, so we'll be back soon. We hope to be meeting with the UCSF Epilepsy Clinic soon (would be nice if it was Tuesday...).
My mom flew in from Hawaii last night and will be staying with us for a while. She has graciously taken leave from her job to help us out. It will be nice to know that Kelly will have some help at home while I'm at work harvesting grapes. Thanks a million, Mom!
She is on phenobarbital and a new drug called Topamax. The Neurologists are comfortable letting us go home with these drugs. Since the phenobarb works well to control the 'scary' seizures, we're comfortable doing the trial and error with the other drugs at home. Hopefully the Topamax works to control her shaking seizures, but if not, there are apparently a number of other drugs to try. Let's keep our fingers crossed!
We spoke to the Neurologists at length this morning. While we don't have an official diagnosis, they are using the 'catch-all' term epilepsy. They think it is likely that her genetic abnormality is related, although exactly how they are not sure. They also do not believe her surgery was the cause of the seizures, just the trigger. Apparently, people with seizure disorders often have seizures when triggered by some sort of stresser (I'd say her surgery was a pretty hefty stress). Even if she never had her surgery, she likely would have had seizures at some point.
We have an appointment with Genetics on Tuesday here at UCSF, so we'll be back soon. We hope to be meeting with the UCSF Epilepsy Clinic soon (would be nice if it was Tuesday...).
My mom flew in from Hawaii last night and will be staying with us for a while. She has graciously taken leave from her job to help us out. It will be nice to know that Kelly will have some help at home while I'm at work harvesting grapes. Thanks a million, Mom!
My Mom and her Moana (a shortened version of Kate's middle name)
Kate with EEG leads (this is what the gauze has been covering). They are stuck to her head with a goo-like substance.
1 comment:
Hope that you are able to go home tonight (and only have to make one trip next Tuesday)! Moana has one special Tutu, taking leave to stay with you. I am glad that both of your families have been so supportive and helpful. I wish I could do more, but there's only so much when you're so many miles away. You all are in our thoughts all the time, you can count on that!
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