parents concern

[greg]

stepson has severe epilepsy siezures getting worse lately they wont stop.we then call ambulance.last two out of three months been in hospital.wife and i are getting very concerned.800mg. topomax 2400mg neurontin 1500 mg keppra 200mg dilantin vegus nerve implant.nothing really helps.

[rackelsmom]

Hi Greg,

I'm so sorry your stepson is having such a difficult time. We have been there with my daughter and the meds failing, it's so scary. Are you seeing an epileptologist specialist? That would be something to look into. We have had great success on the Ketogenic Diet when all else failed (all meds, 1 grid surgery, and 2 resections).

Prayers going up for you and your family,

Ann

[Bernard]

Hi Greg, welcome to the forum.

That's a lot of meds.

It is scary when the seizures just won't stop even though you are doing everything you can.

It is possible for the VNS to cause seizure activity to get worse. Have you considered having it adjusted "down" instead of "up" (or having it turned off altogether for a test period) to see if it might be complicit in the increased seizure activity? Some people have reported better seizure control with the VNS at lower settings than the normal recommendations.

Maybe something in here will help: Proactive Prescription for Epilepsy

[greg]

will give that a go next app.i think its adjusted at 2.75 started at 2.0.i think max is around 3.5 with a 30 second jolt every 5 mins.

[RobinN]

My daughters seizures became much worse on meds. We have had far greater luck with making nutritional changes, neurofeedback therapy, and supplementing for brain and body health.

[Birdbomb]

Yowzer! His settings are awfully high. Are you sure he started @ 2.0? I have never heard of anyone doing that. The body needs time to adjust and the first recommend setting is .25 and sometimes .50.

When was the last time you had his VNS interrogated? He may be at EOS (end of service) or have a lead impedment. High settings such as his will cause an early EOS and the 102 model has a bad history of sudden EOS without warning.

Might want to pop into my site for more info and input from other VNS patients.