IVIG, Ketogenic Diet or Vagus Nerve stimulator?

[swkhan]

Has anyone tried IVIG, Ketogenic Diet or the Vagus Nerve stimulator?
My daughter is at a point where she is having 1-2 grand mal seizures every night. And there aren't any anti-seizure meds left to try since she is so sensitive to the side effects. (The last med we tried - phenobarbital- was terrible!!)

We are thinking of IVIG. Not sure of the ketogenic since she is a very fussy eater to begin with.

Any suggestions??

 

[Dutch mom]

My son had 10 to 100 seizures a day, not responding to medication. He is on the ketogenic diet for 7 years now since he was 5 years old, he's free from AEDs for 6 years. His seizures are reduced by 90% and his EEG improved >70%.
The diet is not easy in the beginning, children have to get used to the food and calculating meals takes a lot of effort in the first few months. But when it is effective, it's worth all effort and you'll get used to the cooking soon (a meal takes about 10-15 minutes for us.) My son found the food difficult in the firts 3 months but since he's used to it, he's a better eater than he was before.
You'll know if the diet helps within 3-6 months. About 60% of the children have a >50% seizure reduction on the diet, about 40% have no or little effect or don't react well on the fat food .
A VNS usually takes a lot more time to get finetuned and usually is an add on to medication, I don't know any children who are seizure free on a VNS only, some are better with the VNS together with meds. But I know many (mostly kids with refractory epilepsy) who are significantly better on the keto diet. Many of them are/were picky eaters.
Personally I would give the diet a try first because of the better chance of effect, the shorter time for trying and no operation. No experience with IVIG.

 

[valeriedl]

I have a VNS and it has helped alot with my seizures. I still have to take meds along with it however.

Since I've gotten it, in '07, the frequency and severity of my seziures has gotten alot better. I'd have probably have at least 5, but usually more seizures a week that would last at least 10 minutes or longer and are usually Complex partial seizures where I'd black out druing the seizure. I'd have a horrible headache after one too. I do have grand mals but they are very rare for me.

Now I'm having around 5 seizures a month and sometimes less than that. I've gotten alot better recently since my last visit when he 'upped' my VNS voltage (that's how I describe it, I don't know what the proper term is though). The seizures that I'm having now I'm really not blacking out during which I always did, and they aren't lasting nearly as long as they used to and I'm really not getting a headache after one.

 

[RobinN]

My daughter has made nutritional changes and her seizures are controlled. She has not taken any meds for about three years. She has had a few seizures but seems to be able to go for many months (8) at a time.
When on meds she had 6 seizures /month