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VNS
Thu, 06/23/2011 - 12:38Topic: Surgery and Devices
Hi everyone. I wanted to hear from those of you who have had VNS and the success or failures that you may have experienced. I have a 12 year old son who has been having seizures since the age of 7. Mostly partial complex but many do tend do generalize. He has had numerous episodes of status epilepticus the worst of which was 12 hours. Luckily he was already in the hospital and was airlifted for more specialiized care, medication, and intubation. He is currently on Dilantin 100 mg in the AM 130 in the PM, Klonopin 1 mg TID, Zonegran 200mg AM and PM and Lamictal 200 in the AM and 300 in the PM. Also has Diastat 10 mg and versed 2 mg for clustering. He was stable for a long time and recently (April) began having up to 3-4 seizures a day. Doctors are recommending adding more meds or doing VNS. Not sure which way to go and would like some input. Also seizure surgery is out for us as his seizures result from both temporal lobes and both frontal lobes which is why they are so medication resistant. Thanks in advance.
Re: VNS
Submitted by Nerak95 on Mon, 2011-07-11 - 10:22
Regarding your neuro saying if that if a patient doesn't respond to 3 meds, then they won't work, he must be referring to 100% control. My daughter has refractory seizures and she's been on 20+ meds since she was born (she's 27 and diagnosed with LGS where seizures are very difficult to control) however, since we just started Vimpat, there has been an 85% reduction in seizures. Not seizure free but when you've had seizures all your life, this is quite an achievement.
But the neat thing is they are developing seizure meds that work in different ways, particularly Retigabine (ezogabine) so there's more hope than ever.
The VNS and surgery are great options and with tweaking, you will most likely continue to see the benefits of the VNS. :)
Karen
Regarding your neuro saying if that if a patient doesn't respond to 3 meds, then they won't work, he must be referring to 100% control. My daughter has refractory seizures and she's been on 20+ meds since she was born (she's 27 and diagnosed with LGS where seizures are very difficult to control) however, since we just started Vimpat, there has been an 85% reduction in seizures. Not seizure free but when you've had seizures all your life, this is quite an achievement.
But the neat thing is they are developing seizure meds that work in different ways, particularly Retigabine (ezogabine) so there's more hope than ever.
The VNS and surgery are great options and with tweaking, you will most likely continue to see the benefits of the VNS. :)
Karen