Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Hard Decisions

My son is 6 and has run the gammet of medications, yet still have 20+ seizures a day. We have an appointment on April 12th to discuss the VNS or the Ketogenic diet. In my research, it seems that the risks of both way outweigh the benefits.

The problem is that my son has an undiagnosed regressive disease that will eventually take his life. We are in the process of genetic testing to find the exact disease.

I am going back and forth on what is in my son's best interest. I want to give him the best quality of life and just wonder what is best. What other options do we have?

Comments

Are the risks/downsides of

Are the risks/downsides of keto something specific to your son and not others? Keto is started in the hospital but it works amazingly well for many people. Some approaches to keto would be quite difficult for our child based on another medical condition but really the fact that our child lives on carbs and not much else was a bigger problem in considering it.

I am on a keto diet +

I am on a keto diet + zonegran, that can be really dangerous but in my case I'm okay! My metabolism adjusted. Make sure to have your son drink lots and lots of water! And monitor his blood pH periodically. There are a lot of helpful blogs on line for keto recipes.It honestly has not stopped my seizures, but maybe would have been worse? I don't know.You could try acupuncture. Have you looked into that? My parents took me to a Chinese dr as a kid (on the side), they swear it helped me.Have you considered cannibis? Specifically CBD? It has shown promise for epilepsy. I've used it a few times to stop a seizure! Never prophylactically, but I'm considering it since after 6 drugs I still haven't found seizure control.Good luck!

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P