Joanie

[Guest guest]

Joanie,

I feel for you, you sound about as frantic as I did a while back.

My daughter just got the VNS on Dec. 8th and it was turned on the 22nd. So

far, I have seen some improvements in the seizure intensity but not in number of

seizure discharges. We have only been back twice to reprogram and her VNS now

stimulates every 3 minutes lasting 60 seconds. So if a seizure falls within

the non-stimulating period it does not work. However, as mentioned I have seen

some improvement in the seizure intensity being decreased and it has helped

with her personality. Prior to the AED's was an angel, very, very loving

child and then the AED's made her moody and emotionally unstable not like

herself at all but she is doing real well with these aspects since the VNS

device.

The VNS also helps with attention span, memory, and sleep cycles (brainstem

controlled).

You mentioned has several types of seizures. Have they told you how

many focal points he has? Where in the brain are they originating?

I just changed neurologists to one who just sees epilepsy patients (an

epitimologist) and sofar I am very pleased with her. She's the one who initiated

the

VNS and proposed that if it does not work for the last resort is the

gamma knife. It may be in your best interest to find a neuro or epitimologist

who only deals with seizures day in and day out. I know NC is too far for you

but most states do have epilepsy institutes.

A resource that may be beneficial to you is the S.E.E Program. Download his 3

lectures on epilepsy. I went to one of his conferences and learned a lot from

him. There is a chart that tells you which meds is best for what seizure

type, etc. Also he emphasizes that monotherapy is desired, he is strongly

against

adding second and third AED's.

I hope this helps, if you need info about the things I have mentioned please

feel free to e-mail me back.

Sincerely,

Tracey