Dietary Treatments for epilepsy

[Mom2Ava]

Hi all. Thought I would provide some info for dietary treatments for E.

Here is a good link to the epilepsy.com dietary treatment page:
http://www.epilepsy.com/epilepsy/dietary_therapies.html

We are doing the Low Glycemic Index treatment and are off meds except for Ativan or Diastat as needed.

This time last year we had frequent trips to the ER for stinking status episodes.
Haven't been to the Er since last Nov and have not needed diastat since early spring.
We are not 100% sz free and are getting little SP clusters here and there but we have seen a huge improvement.

[alizesmom]

I've heard a lot of people who are happy with the results of that diet. Karen

[Mom2Ava]

We are very happy!

I am hoping within the next few years the diets ( LGIT, Atkins and Keto) will be a first line of treatment rather than a last.

[Denae]

We are looking back into the dietary options, Dr.P suggested it the first time 3 years ago, then I was unwilling to accept that her seizures couldn't be controlled. But now after multiple medication failures and a VNS that doesn't help enough we are looking back at them.

Right now I am most interested in the modified Keto. The articles you posted on the EF were great! (and I would have posted there, but it is such a pain trying to get logged on with all the error messages I get all the time there)

[Porkette]

Hi Folks,
I've been on the ketogenic diet for sometime now to help control my absence and cp sz. The diet has worked great for me since I'm drug resistant and I've had 2 brain surgeries to help reduce my sz. If you are interested you can buy the book titled: "The Epilepsy Diet Treatment" by Dr. John Freeman of Hopkins University.
The diet is high in fat but low in carbs. protein, and starch. What's great about the diet is I lost 70 lbs. in 3-4 months even though I ate cheesecake and it helped stop most of my sz. except when hormones were changing. Depending on the individual you usually have to go into the hospital for a few days while a dietician works with you. You must fast for 2 days and then slowly work your way on the diet until your body is used to it. Within time ketones will build up in the body stopping sz. and reducing a persons appitite so they will only eat 3 small meals a day and have 2 snacks a day. A person can't use vegetable oil while on this diet you must use either canola oil or olive oil to cook with, along with butter, a lot of heavy creams and cheeses while on the diet. Here's wishing all of you well and May God Bless You!

Sue

[Mom2Ava]

That is great Sue that you are having good luck with Keto.
I have been reading through Ketogenic Diet by Freeman. I think it is very interesting.
I am reading the third edition. I am very surprised by the menu and recipes. It does not seem nearly as restrictive as I once thought.
I would do it in a heart beat for Ava if the LGIT was not working.

Danae ... about all of those error messages at EFA PHP .......
GRRRRRRRRRR!!! :mad: :mad: :mad:
I am so frusterated. I have not been able to get on all day.

Here are some more links to good LGIT info:

Article:

http://site.matthewsfriends.org/index.php?page=low-glycaemic-index-diet

Slide Show:

http://site.matthewsfriends.org/uploads/File/Keto%20Forum52007.pdf

Link to Rose's story. A video of a girl on LGIT explaining the diet.

http://www.massgeneral.org/childhoodepilepsy/families/rose.htm

There is also info on Keto and MAD on those sites.

[CasaDe]

Hi Mom2Ava!

Keto is our next stop, if the prednisone treatment doesn't work. We almost tried LGIT, and I wish we had, but I've heard that the stricter diet should be tried first. Have you heard that, too? I've heard it's more effective that way.

[nick's mom]

i've heard that too. i think it's because they figure it's easier to lighten up on a diet but harder to get tougher if necessary. so it might be a good idea to try keto and see how that goes first.

[Mom2Ava]

Hi Mom2Ava!

Keto is our next stop, if the prednisone treatment doesn't work. We almost tried LGIT, and I wish we had, but I've heard that the stricter diet should be tried first. Have you heard that, too? I've heard it's more effective that way.

Where did ya hear that CasaDe? I don't think I have ever heard that.
I suppose though if my child had one of the syndromes with severe regression & so forth ... I would want to try full blown keto first.

Hey, lots of prayers and luck to you that the prednisone works.

If you need any info on dietary stuff , let me know ... I have tons of info I can share with you ;)

[CasaDe]

I don't recall where I heard it :confused: , but it related more to seizure efficacy than impact on the child.

Something like the diet would have a greater chance of success if it was started more stringently. I don't know why that would be, unless the sudden change in body chemistry works better than a gradual change.

Though I certainly agree with the idea that it would be easier on the child that way, Nick's Mom!

[Mom2Ava]

I don't recall where I heard it ,but it related more to seizure efficacy than impact on the child. Huh. I will have to ask our dietician about that one.

I do wonder if a good fast might be beneficial for those severely impaired(while in a hospital under a physicians care of course).

[Alexia]

Hi, I've been away from brain talk for a while but saw this forum. My daughter has been on the Keto diet since Dec. 06. She also has VNS. The diet has been a help to her but she's not seizure free unfortunately. But we continue with it because it has helped her more than any of her medications ever did.

[CasaDe]

The diet has been a help to her but she's not seizure free unfortunately. But we continue with it because it has helped her more than any of her medications ever did.
Hi Alexia! Mind if I ask what type of seizures your daughter has? Jimmy has complex partials.

I'm sorry she's not seizure-free!

[Alexia]

I'm not sure but they're either complex partials or simple partials. I can't tell weather she is aware during one. They last several seconds up to 15-20 seconds at times. She has facial twitching around the mouth, eyes dialate and sometimes roll up. Her head drops and shakes a bit. These happen several times a day. They come in clusters .... sometimes she has 12 in 30 mins. and then she can go hours with nothing. They don't seem to interrupt her activity other than if it lasts long enough and she is standing or walking she will lose her ballance and fall. These are different than before the diet. Before the diet she would go into status about 1 x week and we were constantly worried that something would happen on the bus or at school activities. The school nurse was freaking out all the time and tried to prevent her from participating in activities.

So I'm reluctant to say the diet isn't working because I couldn't stand to go back to the old type of seizures she was having. It is frustrating though that we can't get rid of the seizures, and the drugs. The neuro is not willing to wean meds because she is still having seizures.

Our other problem is that we're having extreme difficulty getting her to eat. She is having serious appetite problems to the point she is losing weight. We've had to liberalize her diet significantly (she's on a 2:1 ratio) and sometimes she still doesn't eat all her food. So I'm considering switching her over to Atkins or LGI. We go back to neuro in 2 weeks and I'll be discussing all our options. I'm just not ready to go back to the way things were. If we can maintain seizure improvement on Atkins or LGI than I'm all for it.

I'm so glad I found this forum.

[CasaDe]

Wow, Alexia! Your daughter's seizures sound a lot like my son's. He will go months without any (on meds), then lose control and have many, many per day - same kind of thing: facial twitching, sometimes staring, sometimes eyes rolling up. We almost tried LGI. Turns out we will go Keto if the Prednisone we just dosed doesn't work.

Mod Atkins maintains ketosis with more dietary leeway - sounds like it might be a good match (but I, of course, am NOT a doctor!).

Let me know what your doc says, if you don't mind!