Epilepsy Foundation

My husband's friend saw a show about CBD and seizures, so I started to do some research. I found a few forums that it can help control seizures. There's a story of a 5 year old who is on a high dose and is controlled, but is not high.

Has anyone heard of this and if so, has anyone tried it and had any success.

I'm thinking of addressing this to my neuro on my next appt.

Mayra

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This is the link to the story

http://www.youtube.com/watch?v=BH5yzEu3JGQ

my wife is a member of douse group on yahoo. The mother of the boy in the story run the group

We've never used it, but I know that there are several Dravet kids that have had good luck with CBD.  No idea what the success percentage is though.  By using a high CBD to THC ratio you don't get high (THC is what gives you the high).  If you're on facebook I'd join the "Pediatric Cannabis Therapy" group, they'd have a lot more info:
https://www.facebook.com/groups/151947154925108/

Here's another CBD video:

https://www.dropbox.com/s/f7gsa2o2dczg9cy/Patient%20Testimonials_Rebecca%20Brown.mp4

That was a good video thank u for sharing it with us

Can this be used with anyone who has epilepsy or is it just for Dravet syndrome?

I would love to know more about this and who do I talk to about this.

 

Mayra

AFAIK it's not Dravet Syndrome specific, neither is the "Pediatric Cannabis Therapy" group.  If you don't get the answers you need here I'd try the "Pediatric Cannabis Therapy" group.

Thanks so much, I did join the group.

Jim (Dravet Syndrome dad) said:

AFAIK it's not Dravet Syndrome specific, neither is the "Pediatric Cannabis Therapy" group.  If you don't get the answers you need here I'd try the "Pediatric Cannabis Therapy" group.

When we brought it up to our neuro she did not like it saying there isnt enough research and such. Well there is and they arent gonna try and look at it. Its all about money. Some drs support it but most dont. I would just ask what they think. Dont tell them if you do, when i said we are gonna see a naturopath first before we decide to do the vns surgery we were looked at like idiots. My son is my son. Drs are blind to anything that wont help make them money. Cbd tincture can be up 30$ for a month, how much are most of you or your ins paying for seizure meds that make your child a zombie and have all the horrible side efe ts along with regression. My son did. Wouldnt you want your child to be themselves and not altered. Cbd does not make them high it helps the issues.
Yes cbd can be used for other things other than dravet... Epilepsy altogether, people with ms use it among other illnesses.
How do you go about getting it and what about the meds she's on now. My daughter is on 5 meds plus VNS. She also had 2 brain surgeries.

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How do you go about getting it and what about the meds she's on now. My daughter is on 5 meds plus VNS. She also had 2 brain surgeries.



Amanda Johnson said:

When we brought it up to our neuro she did not like it saying there isnt enough research and such. Well there is and they arent gonna try and look at it. Its all about money. Some drs support it but most dont. I would just ask what they think. Dont tell them if you do, when i said we are gonna see a naturopath first before we decide to do the vns surgery we were looked at like idiots. My son is my son. Drs are blind to anything that wont help make them money. Cbd tincture can be up 30$ for a month, how much are most of you or your ins paying for seizure meds that make your child a zombie and have all the horrible side efe ts along with regression. My son did. Wouldnt you want your child to be themselves and not altered. Cbd does not make them high it helps the issues.

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