Modified Atkins for absence seizures.

[dbrim]

Hi,
I have heard a great deal of good stuff online about the modified Atkins for absence seizures, mine don't seem to want to play ball when it comes to medication. I'd like to try the diet route as an added extra to my current meds in the hope it will make some difference.

However my neurologist / epilepsy nurse / last neurologist at a different hospital have all said that it is just a placebo and is a load of tosh.
Help? I would try anything right now, but does anyone in the uk know where I can get help from someone who believes there is some merit behind this?

Has anyone tried it and had success? Or even had no joy with it?

 

[Nakamova]

Hi dbrim --

The medical professionals who pooh-poohed the success of the MAD are at best ignorant and at worst incompetent. There is good research showing success of the MAD in reducing seizures, particularly absence seizures. If you feel like trying to convince those meatheads, you can direct them to these links:
http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults
http://www.medscape.com/viewarticle/728208
The diet doesn't necessarily work for every person. In some cases the diet helps to reduce the seizures but doesn't get rid of them all together.
Here are some links from the CWE archives reporting individual experiences with the diet:
http://www.coping-with-epilepsy.com/forums/f32/mad-modified-atkins-diet-6871/
http://www.coping-with-epilepsy.com/forums/f32/modified-atkins-diet-2326/
http://www.coping-with-epilepsy.com/forums/f23/diet-has-helped-your-epilepsy-6311/
Here's a link to a site that provides information about the using the MAD diet:
http://www.atkinsforseizures.com/
You might also want to conside the Low Glycemic Index Diet:
http://www.coping-with-epilepsy.com/index.php?p=low-glycemic-index-diet
It would be ideal if you could start any diet with the blessing of your doctor and the help of a registered dietician or nutritionist. You might try contacting these folks in the UK for information on practitioners: http://www.thedaisygarland.org.uk/welcome

 

[epileric]

Hi dbrim --

The medical professionals who pooh-poohed the success of the MAD are at best ignorant and at worst incompetent. There is good research showing success of the MAD in reducing seizures, particularly absence seizures. If you feel like trying to convince those meatheads, you can direct them to these links:

Actually I think the medical professionals might have been on their toes. If you look at all the links given they all refer to the 1 study of Dr. Eric H. Kossoff.

He's done a great study but it is only 1 very small (only 14 patients stuck with the diet) and no control was used. It also has not been repeated as is required to insure its validity with science. That doesn't mean MAD doesn't work but it makes the research very preliminary and doesn't prove it does work. I think it would be irresponsible for a doctor to recommend any therapy that is so preliminary.

As Nakamova has shown in her links there have been many anecdotal claims regarding MAD but they are anecdotal. I would suggest if you do want to try it then make sure to let your neurologist know as much so that they can monitor your reactions to the diet. If it helps you might help prove the diets worthiness.

 

[dbrim]

I have been browsing the web and it seems dr kossoff does quite a bit of research involving MAD. Thanks nakamova!
I really want to stop playing about with AED's. None of them seems to be effective for me for longer than a week or 2 and then The dose goes up and up and up with no change to my seizures.

I really want to make this a lifestyle change but I would rather have the help of a medical professional as I get started. I would rather do things properly or not at all.
The low GI looks like a good option too, but I can't seem to find as much feedback on that as I can on MAD.
I guess I need to keep searching the uk for someone sympathetic to my wishes and needs.... Because clearly their method isnt working.

I can't help but feel AED's are like Sellotape and superglue, they can patch things up.... For a while, but they never fix the problem.
I'm hoping to find the root of my problem and triggers rather than cover them up with ever increasing meds.

Thanks for the replies

 

[Nakamova]

Hi Eric --

There are other studies that have shown the Modified Atkins can help with seizure reduction, including ones with non-dietary controls subjects:

http://www.ncbi.nlm.nih.gov/pubmed/23294191
http://www.ncbi.nlm.nih.gov/pubmed/17241226
http://www.ncbi.nlm.nih.gov/pubmed/22001499

 

[epileric]

There are more studies by other people but they are small & most (if not all) show it helping only 30-60% of those being tested with a very small portion of them getting their seizures completely stopped. This study was done very recently (Sept. 2013)

Although specific treatments may be more appropriate for specific genetic and metabolic syndromes associated with ASD and seizures, there are few studies which have documented the effectiveness of treatments for seizures for specific syndromes.

http://www.ncbi.nlm.nih.gov/pubmed/24350200


The modified Atkins diet for intractable epilepsy may be associated with late-onset egg-induced anaphylactic reaction: a case report.

Then other studies say that the diet is good with other meds
http://www.ncbi.nlm.nih.gov/pubmed/21269295

It may or may not help but with such testing I cannot call a doctor names for not recommending it.

Also be careful as there are preliminary studies implying that such diets contribute to Alzheimer's Disease
http://www.nutritionandmetabolism.com/content/2/1/28

 

[chop456]

dbrim,
Hello! Here is the perspective of our family, who is using MAD with success.

Paige is 15 had has JME. Prior to MAD she was having myoclonics 4-5 mornings per week. Any given day there would be between 5-15 jerks. Last year she was late for school 75% of the time because she needed to lay back down and take more time to fully wake up. We have been on MAD since June 24 (2012) and have seen very good results. She now only has myoclonics during her TOM and it has been reduced to 1 or 2 jerks on the 1st day of her cycle. There are some months she will go with NONE. I do have to admit this month she was away at camp during her TOM, got less than the desired amount of sleep and did have 2 days with 2 jerks each day. Still, a drastic reduction from where we were.

The BEST thing I did was e-mail Dr. Kossoff directly. I told him about Paige (age, diagnosis, athletics, vegetarian, no T-C to date, only 1 med) and inquired if he felt MAD would be a viable option. I was so happy to receive his e-mail back. Basically, he said "why not?" After a few more weeks of researching recipes, foods, articles etc, we were on MAD. I saw "we" were because my husband and I joined Paige and began the diet with her (minus all of the extra fat).

The diet may not be for everyone. The diet may not have the results as quick as we have seen. But, the diet is NOT impossible to follow. Paige told me she would give me 3 months on the diet to see if it would work. We saw improvement within 3 days. 7 months later we are still going strong. As you stay on the diet and see improvements, you can increase carbs or reduce meds. For now, we have increased carbs. I view the diet as healthy eating with increased good fats.

Sorry so long.

 

[dbrim]

Chop456, thank you so much for your reply, it makes me feel like there is hope for me too after hearing your story.
I am so glad to hear that Paige is doing so well! It's really encouraging news for the rest of us!

Do you have any resources that you find particularly useful for information, studies/ recipes / books?
I am already on a fairly low carb diet, however am wary about gaining weight on MAD.

Is Dr Kossoff's email address readily available? I would really like to hear his opinion as to whether this diet may be useful for me.

Thank you for taking your time to go into so much detail for me. I really appreciate it!

 

[chop456]

Dbrim.. Check you inbox

 

[dbrim]

Thanks chop 456!!

 

[RobinN]

Making nutritional changes has profoundly helped my daughter.
Haven't needed any study to see the improvements.
It was done by trial and error, and she still is needing to be proactive daily.

Choices matter.

 

[epileric]

Making nutritional changes has profoundly helped my daughter.
Haven't needed any study to see the improvements.
It was done by trial and error, and she still is needing to be proactive daily.

Choices matter.

Your daughters seizures by your own claims were catamenial meaning they were triggered by hormones. They started around 13 (when puberty & hormonal changes start) and ended around 17 (when puberty & hormonal changes subside). You also used neuro-feedback & supplements. Even though diet may (or may not) have helped, all those factors make it hard to say that it was specifically the nutritional changes that made any difference.