Gaustaut Syndrome - Help Me With Organization to Fund Research

My son received that diagnosis one year ago. After an EEG, which reveals Gastaut to be a definitive pattern of brain waves and very identifiable, it turned out not to be the case. Connor's neurologist still believed that he was in the transition to Gastaut and that he would develop it as he had all the symptoms. The Ketogenic Diet is very effective for Gastaut and I believe can stop it in its tracks. A bold statement, but it happened for us.

Hi Shanae, Arlene's son had Lennox Gastaut, too, and his seizures, too, stopped with the ketogenic diet.

Who told you that your son cannot be helped? I'm going to be very blunt, and I apologize if I offend you.

Whoever told you that was wrong. If it was your pediatrician, get another one. If it was your neurologist, get another one. You HAVE to find another doctor because the one you have is willing to take hope away from you. That's beyond cruel--would you EVER do that to another human being?--and very likely wrong.

Watch this video (scroll down to the third one) to hear the same message from world-renowned experts on epilepsy about what you should do if your doctor takes away hope. Just because a doctor who doesn't know better is ready to give up on your son doesn't mean that you should, too. He needs you to believe that he can get better -- you really have to read Arlene's book if you haven't already.

I understand that finances are an issue. One of the benefits of the KD is that it's just food, not medications. My suggestion is that you find the closest KD center to you and make an appointment for your son. Ask to talk to the social worker, who may be able to help you with the costs of travel and housing if those are an issue. If you all don't have health insurance, it doesn't mean that it's impossible. It just means you're going to have to fight a little harder. There are charitable organizations that will also help with travel costs--you just have to start digging around to find out which one will meet your needs.

I don't know about starting an organization. I do know that letting as many people as possible know about your need--through a church or even by putting collection jars at the check out counters in a grocery store--is one way to start.

You're not alone in this. We're all here with you.

Hi Shanae,
 
Thanks for your email and an interesting question.
 
From what I gather, you want to start an organization to bring in money that can be used to find help find a cure for kids with Lennox Gastaut Syndrome?
 
Here are my thoughts.
 
1) I strongly feel that any research that would ever get done would be used to just make a new drug and that's the last thing these kids need - another medication to try.
 
2) It is extremely difficult and time consuming to start any type of foundation and tons of red tape.  Then you need to go find the money. Then you need to decide where the money is spent.
 
3) I think the time and effort would be better spent educating families about the Ketogenic diet.  It is a proven diet that helps at least two-thirds of kids with hard to control seizures.  If more families know about it, they can demand it. More money needs to be spent training dieticians who can administer the diet.
 
4) I agree that it would be nice to try and find out why these kids have multiple seizures types although I am not completely convinced that the secondary and third seizure types were not a result of the medications that the child was on in the first place and the medications caused more seizures. I can't tell you how many times I have heard from parents that my child's seizure type changed or a new on started with the addition of another drug.
 
Anyways, that is what I am thinking. I think my time is best spent trying to get these parents to get off the drugs and try some alternative treatments that I know can help them.  I think enough money has already been poured into research and still 70% of kids with epilepsy do not have a definitive cause.
 
Warmly,
Arlene