My Mission

After four years and six different anti-seizure medications that didn't help our daughter Brooklyn, we discovered the Atkins Diet for Seizures via Johns Hopkins. Seven months later and Brooklyn has approximately 15 seizures a day - down from 100. While Atkins will not work for everybody, I believe it is an approach that needs to be made known. I have reserved some domain names and am planning a resource website. My initial webmap:

* Home - Atkins for Seizures
* Recipes
* Resources - books, low carb suppliers
* Our Story
* Media - news on Atkins Diet, Epilepsy, etc
* Epilepsy in History
* Faces of Epilepsy - contributed stories and pictures
* Keto Diet - general summary & links
* Charities - organizations that provide assistance to epileptics
* Blog
* Art for Epilepsy - fund raising; also a forum to publish art by epileptics
* Alternative Approaches to Healing - links & articles (Keto, glucose levels, implants, surgery)
* Links - medicine reviews, epilepsy centers, hotlines

Please review and respond with ideas!

Michael

Johns Hopkins and the Atkins Diet

August of 2004, Brooklyn had a particularly bad reaction to the newest drug we were trying. (Why does it seem like we are experimenting on our daughter?) In desperation, we contacted our neurologist, Dr. Nay, out of Denver. He had just returned from a seminar and recommended we try something very new...

Three weeks later, I found myself in Baltimore, Maryland with my daughter. Johns Hopkins was conducting a study, and looking for 20 children. The children had to have at least three seizures per week, and had to have failed several primary medications. We qualified and Brooklyn became number 13 in the study. Dr. Kossoff, the lead investigator, met with us and so began an adventure in learning and seizure control beyond what we had ever experienced.

Now, seven months later, Brooklyn is drug free. She has approximately 15 seizures per day, and we have hope that this will improve even more. The study is complete with dramatic results for most of the other 19 children (some seizure free) and we are looking forward to some official publication. Dr. Kossoff has taken what he learned from our children and is now conducting a second study - this time with 50 children.

Our journey has included the answers to these questions and more:

Is this truely an Atkins Diet?
How do we keep our growing child from losing/gaining too much weight?
How do we keep her interested in eating a restricted diet?
What are hidden carbs?
Are Atkins products okay for Brooklyn?
What are Ketones?
Do they suppress seizures?
What is an appropriate Ketone level?
What about kidney stones?
How do we manage high cholesterol?
What do we send for school lunch?
What suppliments should Brooklyn have in addition to the diet?
Where can we find recipes?

Now that the word is starting to get out, there is a need for accurate information for families that are interested in this approach. It is important to realize this is a big project, and not one to be embarked on without guidance. It is NOT a good idea to just buy the Atkin's book and start the diet. The credibility and guidance of a neurologist and dietician will help you through some expected rough spots. Of help to us has been an online community on the yahoo boards run by one of the families in the study. It is "Atkins4seizures". This group and its moderator has provided tremendous emotional support for us. It has also been a terrific place to exchange recipes, food allergy ideas (seizure triggers), etc. As with all online communities it is occasionally the source of misunderstandings and hurt feelings. It is important to remember that these are families trying to help their children - not doctors with the associated qualifications. That said, this close knit group of people are heros in this story.

Michael

Our Daughter's Story

We noticed Brooklyn's seizures when she was two and a half years old. Her initial EEG showed absense seizures every 60 seconds, awake or sleeping. The seizures lasted anywhere from 2 seconds to 12 seconds. We were obviously distressed!

We could find no cause. MRI and EEG could not pinpoint a source. The seizures appear generalized. We tried Zarontin, Depakote, Lamictal and several others. As the years go by, her seizure pattern seems to slow down a little (giving us hope that she may outgrow them?). At six and a half years, her EEG shows seizures every five minutes. Some are very short. Some lasting up to 18 or 20 seconds. We estimate a hundred visible seizures daily. Brooklyn starts first grade.

Any parent will understand the emotional trama we've gone through. We had one doctor that (erroneously) told us that every seizure was leaving scar tissue behind in her brain. There was the time she had a seizure at the top a children's slide, lost her balance and fell off; the time she made an abrupt left turn while walking in a crowd of people and we couldn't catch up; her classmates yelling at her and shaking her to 'snap her out of it'; the time she was speaking into a microphone and had a seizure and the crowd erupted into laughter... Yet through this all, she has remained a bright and happy child. We are proud to be her parents.

Michael

Sponsorship

It is my goal to have this be a self sustaining site from a financial point of view, after seeking out some initial sponsorships. Of course, this blog is just the drawing board for the ultimate site. I've registered www.atkinsforseizures.com as the address for the new site.

I am looking for three classes of sponsors:

Advertisers:

"Epilepsy is the world's second most prevalent neurological disorder, which is characterized by recurrent seizures. There are twice as many people with epilepsy than the combined number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis. Epilepsy can develop in a person of any age, although it is most common during the childhood and senior years" - according to http://www.xycorpmed.com/en/epilepsy.phtml

A website dedicated to a new approach to this disease should get tremendous traffic. I am seeking sponsors that are interested in their name included on our pages. This will be a professional website & will require some expense in the technological/talent department to set up and maintain.

Charities/Foundations:

Numerous organizations exist to promote medicine and health. Many are dedicated to people suffering from epilespy. Others are targeted toward research, alternative medicine, etc. I believe that a few dollars here will go a long way to benefit people the world over as we get the word out regarding this unique, new therapy for seizures.

Personal donations:

I have set up a paypal account dedicated to "Atkins for Seizures". You can access it with the button on the right, in the link section.

Any donation will be appreciated. $2 or $3 dollars through paypal will add up!

How will the money be used? The bulk of the cost for this site will be the initial hosting and design. I also will be doing some advertising - though I hope word of mouth will help. Some 'seed' money will be needed for a couple of the projects designed to make this a self sustaining site (see my next entry "Sustainability").

Sustainability

It is my hope this project will become self funding after the initial set up phase. As the income grows, we will be in a position to give money to assist people with epilepsy. A few areas of expected income from our website are:

* Individual donations (a few dollars through paypal is quick and painless)
* Adsense income from Google
* Book sales - Amazon affiliate - we will be providing a must have book list for people who are going to try Atkins for Seizures
* Art for Epilepsy - sales on site, and off-site. We have a couple international artists (one bronze & one oil) who will be providing an edition work for the benefit of Atkins for Seizures. We also plan to expand this to include art by epileptics.

As always, I am looking for input.