Monday, September 09, 2013

Exciting News for Epilepsy and How You Can Help



Note:  This post is especially timely for any of my readers who happen to live in Utah--make sure to read to the bottom.  However, I hope everyone takes a minute to educate themselves on this important topic as it could be something that lawmakers in your area will have the chance to vote on as well.  

A while ago I read an article on CNN that talked about a new treatment for children with severe epilepsy.  I was really touched by the article especially since I've spotlighted a couple kiddo's with severe epilepsy.  Until these spotlights I never understood just how debilitating certain kids of epilepsy can be.  You can read those spotlights here and here (coincidentally both featuring adorable little boys named Cole.)  What was so great about this article was how a little girl went from having hundreds of seizures a week to 2-3 seizures a month.  The results of her treatment were immediate and drastic.  When children have severe epilepsy it affects almost every aspect of their lives, including cognitive and developmental delays.  I urge you to read the article here.

The medicine is cannabdiol, or CBD. It's extracted from an extremely high CBD, low THC strain of cannabis nicknamed “Charlotte’s Web” (named after a girl in the article.)  It is taken orally as an oil, and has virtually no THC which means it cannot make you high. It's a treatment, not a cure. 

So when my friend posted about a mother in Utah who is part of a group of epilepsy moms trying to pass a bill in Utah that will allow their children to be treated with this medication I wanted to help spread the word.  The bill is narrow; it is not an initiative for medical marijuana; it includes ONLY the high CBD oil for use in epilepsy. The medication would be used under the supervision of the neurologists treating the children (the neurologists support this legislation.) There's been a lot of support from legislators on both sides of the aisle. The sponsor of the bill is a well-respected conservative Republican.

So here's what's next:

Public Information Meeting
Tues, Sept. 10th 6:00pm - 8:00pm
Utah Valley University Sorenson Student Center
Room 206a
800 West University Pkwy


If you're interested in knowing more about legislation, "Hope for Children with Epilepsy," interested in helping get the word out, or want to talk to other moms and families who are dealing with epilepsy and what this bill would mean to them, this is the meeting for you. Attending will mean that you'll be able to write your legislators in support when the time comes.


If you have a few mninutes check out the video below...basically a summary of the CNN article above also featuring another adorable kiddo as well.  


It's all about educating ourselves friends!  If you happen to be in Utah please do what you can to support this important cause!  As a sidenote, I'd love to hear from any of my epilepsy moms out there--thoughts feelings about this treatment? 

5 comments:

  1. Anonymous2:44 PM

    This is a miracle! What an amazing blessing. I suspect that with more and more acceptance of cannibus, there will be more and more ways to use it and to help so many. And it's more safe and natural than what is made synthetically in a lab. So awesome! Thank you for sharing this!

    ReplyDelete
  2. As the Mom of a grown son who has many issues due to vaccine damage, I know what it is like to watch your child have seizure after seizure. This was one of the side effects for John. Meds did nothing but make his sick, sleep, bite his lips, lick his lips, twitch, it's horrible what drugs do to children. And as anyone watching this clearly saw..they didn't help. It's a no brainer, and thank God someone is growing this miracle plant. I don't live where it's legal...yet. One day I hope to see that change. As for what I choose to control my son's seizures..we went 100% natural with diet, using a naturopath and more. This is a miracle, thanks for sharing and I hope and pray the word gets out about a true God given miracle "drug".

    ReplyDelete
  3. I am so happy for the people that this can help - what an awesome discovery. It is a miracle.
    I have a son with epilepsy who has been greatly helped with medication and no side effects, but I think there are many children/adults who have to look other places because the meds are not working or the side effects are too great.
    I wanted to say that just as parents and others need to be careful of side effects from medications, people need to realize that "all natural" cures (such as vitamins, essential oils, etc.) can and do have side effects as well and that they need to be used with care. It made me concerned when the mother of Zaki said she didn't have to worry about how much she gave him because it couldn't hurt him.
    I have a friend who works in the NICU and says that they have been finding burns on a few of the infant's delicate skin because mom's have been sneaking essential oils in and rubbing them on their babies skin. Just because something is all natural does not mean you can use it without care.
    That said, I loved the video about Charlotte and think that her story is a miracle and surely should be shared with the world so others can benefit.

    ReplyDelete
  4. I am so supportive of this. Did I tell you that Cole's mom is my cousin and I was his doctor when he lived in Utah? Such a hard road. I am constantly impressed with parents who will sacrifice nearly everything in their life for their children.

    ReplyDelete
  5. I am so supportive of this. Did I tell you that Cole's mom is my cousin and I was his doctor when he lived in Utah? Such a hard road. I am constantly impressed with parents who will sacrifice nearly everything in their life for their children.

    ReplyDelete