[Ketogenic] I'm in ketosis...now what ?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

And that is why it doesn't work for those who have refractory E.
If by "work" you mean cure everything completely in every case, then no it doesn't "work".
If "work" means substantial improvement in a majority of cases taking into account the individual's starting point, then yes, my friend, it does work.

The kids on the original keto diet were all refractory.
 
Yes, I have read many cases where the ketogenic diet has helped improve the quality of life for many by the reduction of seizures. As for me, so far it's been two weeks and counting since my last seizure.

With all that my body is going through right now, I'm almost surprised that I haven't had even any small or partial seizures lately. I do believe that the diet I'm following has ALOT to do w/ it.
 
If by "work" you mean cure everything completely in every case, then no it doesn't "work".
If "work" means substantial improvement in a majority of cases taking into account the individual's starting point, then yes, my friend, it does work.

The kids on the original keto diet were all refractory.

Ok, for Kids, the keto diet works. That is who it was originally designed for- KIDS with refractory E. But then again, here in Colorado so does the Charlotte's Web Medical Marijuana. That is why it was designed/approved for too, here in my state. I could definitely be approved for pot, but I choose not to.

http://www.epilepsycolorado.org/index.php?s=12107
Representative Scott Perry has introduced the Charlotte’s Web Medical Hemp Act of 2014 (H.R. 5226) to remove therapeutic hemp from the Controlled Substances Act. This would expand the availability of this treatment option and make extracting cannabidiol (CBD) oil legal at the federal level by allowing cannabis with less than .3% THC to be grown as therapeutic hemp.

There is no "one size fits all" treatment for epilepsy, and about a third of people living with epilepsy suffer from uncontrolled or intractable seizures, with many more living with significant side-effects, despite available treatments. Uncontrolled seizures can lead to disability, injury, and even death. This is why people living with uncontrolled seizures turn to medical cannabis when all other options have failed.

I am one of those who suffers from refractory E and suffered numerous injuries, due to seizures. And I've met a mother who lost her 17 year-old daughter due to SUDEP. I bet she wouldn't go for the diet without a doc's approval.
 
No, it was not "designed" for kids. The initial trails of it were done with kids who had refractory and really bad cases of epilepsy because they were considered to be so far beyond hope that the "we've got nothing to lose and everything to gain" principle kicks in.
Also, it was thought that adults would never stick to the diet but an adult controlling a kid's diet could make it work.

But that was a long time ago and there has been lots of research since then on adults (mostly through John's Hopkins and The Mayo clinic).

Just because something doesn't work for you doesn't mean it doesn't work.

BTW, if I were living in Colorado I would definitely be taking advantage of some of that Charlotte's Web whether other options had failed or not. I wish I could get some seeds of it sent over here. Hawaii has medical mj but you have to grow your own, no dispensaries.

Oh, please, ketosis has nothing to do with Sudep. That's a big fat strawman. If ketosis can (and it does) reduce seizure frequency for many people, it would even be helpful in avoiding Sudep.

Do you really need a doctor's approval to eat eggs, meat, fish, and veggies? It's the diet our ancestors ate for millions of years.
 
BTW, I think a lot of this could be cleared up if we made a distinction between the terms "THE ketogenic diet" and "A ketogenic diet".
When people see *THE* ketogenic diet, they think of the old school massive quantities of cream and mayo that was tested on kids.

Many people like Joy and myself are on *A* ketogenic diet which is basically just low carb paleo.

Two different concepts.
 
Okay, so I just got my books in, "Practical Paleo" and "Grain Brain". Now I've got a plan to follow - (which isn't realy so different from what I've been doing)

BTW, I WILL be mentioning my diet to my neurologist the next time I see him. He'll probably like to know what it is that has helped control my seizures!

Still in ketosis, no seizures for a couple of weeks now - despite some hormonal issues, and feeling..................GOOOOD! :)
 
Awesome ^^^^ Always nice to give your neurologist a continuing education session. :)

Dr. Perlmutter has another book coming out when you finish "Grain Brain". It's called "Brain Maker". I haven't read it yet but it looks interesting. The thing I like about Dr. P is that he is both a neurologist and a nutritionist. It's rare to find that combination.
 
Yes, I agree. He has the perspective from both "sides". My MIL is an LPN and she only believes in what DRS. say. She thought I was a bit out of my mind for trying this until I mentioned Dr. P - THEN it was ok. Seems so funny to me how some people put so much faith in doctors.
I have heard about "Brain Maker". I think he also has a book called "The Grain Brain Cookbook"

Hey, Cint, thank you for your concern, and I'm sorry if diet doesn't help you - really. I know how frustrating it can feel. I've heard of people overcoming their E and have felt "Why won't it work for me?" But that doesn't mean I'm giving up. I've stuck to it, and have seen some improvement already.
 
Back
Top Bottom