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Epilepsy: Fighting For A Cure

October 25, 2009 5:00 PM

More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined. Katie Couric reports on a disease that may not be getting the attention it deserves.

Epilepsy: A Fight For The Cure
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by dougreit December 28, 2012 12:49 PM EST
Here's the concoction that stopped my son's seizures: Extended release Dilantin or generic equivalent, make sure the dose keeps the patient in the 10 - 20 therapeutic range by taking blood tests. Spread the dosage out. In my son's case, 100 mg morning, noon and night. Again, use the Extended Release version so you don't get the ups and downs of dosage.

2 grams Piracetam - 3 times per day for a total of 6000 mg/day

3 grams Bacopa Monniera Leaf - 1 gram 3 times per day

3 grams/day high quality fish and flax seed oils

At night, 3 mg Melatonin with 100 mg 5-HTP

Make sure the patient gets the right amounts of magnesium and other essential minerals

He also takes supplements including multi-vitamins, an extra 4 grams of C/day, B-100 Complex, L-Glutamine (3 grams/day - 1 gm breakfast, lunch and dinner) and 500 mg L-Carnitine for breakfast with two tablespoons Lecithin.

Ryan's story is at www.GCExperts.com/Ryan

YouTube search "Ryan Reitmeyer" to see the videos

Uptraining Ryan's SMR (sensory-motor rhythm) using Barry Sterman's neurofeedback protocol was also a determining factor.
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by codycowboy1 April 3, 2010 12:03 AM EDT
I noticed these comments ended in November 2009 and that there was no mention of the National Epilepsy Walk in Washington DC on March 27, 2010. My wife and I travelled from Wyoming to support and join our Epileptic daughter by taking her to this event - she was able to raise approximately $2500 for the DElaware Epilepsy Foundation. Lots of people showed up for this event and lots of information was available. We applaud CBS and Katie Couric for taking on the challange of letting more people know about this malady for until someone takes their seizured daughter or son in their arms no one else knows or cares about this condition.
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by sdbritt November 14, 2009 10:42 PM EST
As the parent of a child with epilepsy I'm very happy to see this kind of high level attention being drawn to this often misunderstood condition. Thank you CBS News, keep up the fine work. For an incredibly poignant look into the life of a family affected by epilepsy, I highly recommend the book written by Mary Lou Connolly, who has posted on this site. The book is Missing Michael; A Mother's Story.
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by m51ngc5195 November 10, 2009 5:17 PM EST
November is National Epilepsy Awareness Month.

On October 30, President Obama issued Presidential Proclamations for the month of November for the following:

National Alzheimer's Disease Awareness Month

National Diabetes Month

National Adoption Month

National Family Caregivers Month

National Native American Heritage Month

As of 4:00 p.m., November 10, the White House has yet to issue a Presidential Proclamation for National Epilepsy Awareness Month.

The fine 60 Minute piece called Epilepsy: Fighting For A Cure was a good start at improving public awareness about epilepsy and the 3 million people in the U.S. with the disorder, including the work of Susan and David Axelrod in putting a face on the disorder and seeking a cure. One would think that given the influence of David Axelrod in the Obama Administration, a National Epilepsy Awareness Month proclamation would have been issued at the same time as the others.

Go to:

http://www.whitehouse.gov/contact

Leave a message asking for the President to issue an Epilepsy Awareness Month proclamation. We must be our own best advocates.
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by stoback3 November 5, 2009 7:31 PM EST
This was an amazing piece for so many reasons. Millions suffer from epilepsy every day and yet we still don't have a cure. Susan and David Axelrod have been incredible pioneers in theirs efforts to help these nameless millions and find a cure to stop seizures and the its debilitating affects on the brain, body and overall quality of life. 60 Minutes did a great job talking with the Axelrod family and sharing their personal story to viewers and even more importantly, explaining the staggering facts and statistics about epilepsy. I am mother of an 8 year old who suffered from seizures as an infant and for years after; his seizures left him unable to speak and walk. I applaud 60 Minutes for covering this disease so eloquently and hope it raised awareness so that no more children or adults have to live with the horrible and inevitable impacts of seizures.
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by ctobin2763 November 5, 2009 3:52 PM EST
Thank you for airing this piece on epilepsy. More needs to be done to bring this disorder to light. Many people are in the dark about it until they know someone who has epilepsy. Their stories need to be heard to increase awareness and increase research funding so a cure can be found. Don't give up on them!
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by DeathByPastry November 3, 2009 9:41 PM EST
Thank you so much for doing this story. My daughter has been having uncontrolled seizures for 14 years and, like Lauren Axelrod, she has suffered tremendous damage to her brain and her abilities. Our once vibrant child with all the potential is the world will now forever be dependent on others for her health and well being - or at least for as long as she lives.

When you find out your child has uncontrolled seizures, you feel so alone. But after you look around you realize that their are 1 million Americans in the same boat as you (that's the same number of Americans that have Parkinson's Disease). So you realize you are not alone in living with uncontrolled seizures, but then you start to wonder why you've never heard of epilepsy before. Why didn't you know it was such a terrifying, frustrating, life-altering illness? Why do doctors tell you epilepsy is not a big deal and your kid can still have a normal life (that's only true for 2 in 3 kids)? Why do the best weapons we have against this illness, anti-seizure medications, have such devastating side effects? Why do we NOT know the cause of epilepsy in 70% of all cases? Where the heck is the research?

It's sad to me that my child, who is 12 years younger than Lauren Axelrod, has the same heartbreaking story. We need more research. I think your segment, and what the Axelrod's are doing, is a step in the right direction to help with this. Thank you so much again for doing this story. And thank you Axelrod family.

Thank you so much again. Please follow-up with more stories.
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by katietoo1 November 3, 2009 7:47 PM EST
to continue... When my son was born, he was allergic to dairy. If I was going to nurse him, I had to give it up. IT WAS HARD. REALLY hard. But amazingly, when I gave it up, my seizures stopped. I have been virtually seizure free for four years. If I gave up the sugar, too, I would probably be able to say goodbye to the occasional petit-mal seizure I now experience.

Doctors will tell you my body chemistry changed when I had a child. They may be right. The whole thing is a mystery, as we know. But the seizures didn't stop when I had the baby. They stopped when I cut the cheese.

Sometimes the answers come from the oldest sources. Yay for my brother!!!!
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by md1274 November 1, 2009 8:14 PM EST
I want to thank you for your news report. I have a three year old son that has epilepsy and we have tried numerous of medications and his seizures are still not under control. He has a total of 15 to 20 seizures which consists of clusters a day. We have even tried steriods which did help, but after he was off, they came back. He no longer have the jerky seizures, but now he has the drop seizures. He wears his helmet daily and it does help with the fall. He is developmental delay and he is not talking. He just started school which he has speech, OT, and DT everyday. My only wish and hope is that is will outgrow it. I came to the realization that he will be taking medicine everyday but I want the seizures to be under control.
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by eimh4evr October 31, 2009 8:39 PM EDT
My son started having seizures when he was 16. After trial and error with several different medications and over the course of months we were finally able to get his seizures under control. Then, 4 months ago, I found him in his room, dead from SUDEP at the age of 19.

When he was being treated for Epilepsy no one ever mentioned the possibility of SUDEP ? not his neurologist, not Children?s Hospital, not the Mayo Clinic. We were specifically told that Epilepsy is only dangerous under 2 conditions ? if he has a seizure while doing something dangerous (like swimming or rock climbing), or if he went into status epilepticus. The message was very clear ? if he took his meds everything would be fine.

When my son died I expressed my frustration about the lack of visibility of SUDEP to my primary physician, who was involved in my son?s treatment and is also an ER Doc . He replied that even he didn?t know about SUDEP until I brought it to his attention. It?s also very interesting to compare SUDEP with SIDS ? they have similar characteristics, strike seemingly health people, leave no evidence after the fact, and there is nothing to do to prevent them. Yet SIDS is widely known among the general population, and 90% of doctors who are not neurologists haven?t ever heard of SUDEP. And SUDEP kills twice as many people as SIDS in the US.

The medical (neurological) community does not want to publicize SUDEP. But until we publicize it we won?t have funding and until we have funding we won?t have a cure.

We have to start somewhere.
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