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Absence seizures and vagus nerve stimulator

Thu, 03/30/2017 - 09:06
My daughter is 6 and still having absent seizures after lots of med adjustments. My neuro says we are heading towards a Vagus nerve stimulator. This sounds way over the top to me. Her seizures are short and some days I don't see any. Some days, especially when she hasn't slept enough, I see more. But they are still shorter than they were before meds. 5 seconds maybe? Any experience?

Comments

With absence someone can have

Submitted by Amy Jo on Thu, 2017-03-30 - 09:45
With absence someone can have hundreds of unnoticeable seizures a day. So it isn't a matter of which seizures you catch, it's a matter of seizures you don't catch still impacting the child. This should be backed up with data from EEGs showing what's going on while on meds, yet your post sounds rather subjective. Are you working with an epileptologist? That's the kind of doc to get a second opinion from. 

She went from 18 to 10

Submitted by haustoria on Thu, 2017-03-30 - 09:52
She went from 18 to 10 lseizures an hour per her EEG. That was before out last med increase. I suppose we would do another EEG before we went into surgery. He is a neurologist. Not sure about epileptologist. Thank you. Will look for one  for a second opinion. 

us news and world report

Submitted by Amy Jo on Thu, 2017-03-30 - 13:16
us news and world report ranks children's hospitals and may point you to what your closest well regarded hospital is (see http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery ). Epileptologists are neurologists with further training/specialization in epilepsy (our child's epileptologist is an MD and a PhD). Generally patients get better control with fewer drugs (usually means better quality of life) when seeing an epileptologist. It is standard to refer a patient with seizures still occurring after a year to an epileptologist. Such docs also work closely with neurosurgeons so if a VNS is the right approach, they would probably better explain the issues to you. If your doc is at a children's hospital, you could probably look online to see what dept he's in, education background, how long the doc has been at the hospital, etc... it might not say explicitly that the doc is an epileptologist but the extra training would show up - our current doc did a fellowship at an epilepsy center and is board certified in epilepsy and more. our first neurologist was great - there is a lot of research at our location (our associated medical school and other research is a big focus) so even docs who are not an epileptologist but treat seizures are on top of the current findings with epilepsy. but often good researchers are not the best communicators so one may find some docs just are not good fits for one's family.

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