Dietary changes and seizure control

How much coconut oil do you take every day?


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I would like to see the same study replicated on adults. Perhaps then there would be an outcry.
 
The liver is a wonderful organ its job is to detox stuff, a lot of people underestimate that if we do not look after ourselves there is implications to health. However, that involves peoples lifestyles and choices.

When it involves medications.. we go by what the Dr says to "try out" and see if something works... feels like one is those lab rats :(

I have never ever forgotten the words of the pharmacist who says "EVERY drug has side effects".
 
I would like to see the same study replicated on adults. Perhaps then there would be an outcry.

I think there's been a lot more studies done on HCY levels in adults taking AEDs. I'll go look. However, apparently it isn't routine to test HCY levels in children or adults taking AEDs. Jon's never been tested for that, to my knowledge. Have any of you?
 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320963/

This study found that some AEDs are worse than others in raising HCY levels and depleting folate levels.

The baddies:
Phenytoin (Dilantin)
Phenobarbital
Primidone (Mysolene)

This study said that Valproic Acid (Depakote) didn't affect HCY and folate levels in adults (although other studies found that it did in children).

That's the only 4 drugs investigated in this study. Carbamazipine (Tegretol) was a big baddie in some other studies I read.

The study said that patients NOT on vitamin supplements had lower folate levels and higher HCY levels.
 
Homocysteine and Epilepsy

You have to scroll down a bit to find this sub-topic
http://archneur.jamanetwork.com/article.aspx?articleid=777652

Systemic administration of high doses of homocysteine in animals produce convulsive seizures, a fact that has been exploited in models of experimental epilepsy

most anticonvulsants lower plasma folate levels, and as a result, almost half of patients treated with anticonvulsants had homocysteine levels sufficiently elevated to put them at high risk for vascular disease
 
The cited study that looked at homocysteine levels (http://www.metabolismjournal.com/article/S0026-0495(97)90087-1/abstract) looked at 130 patients, some of whom were on multiple AEDs for at least 7 years, so it's hard to know how widespread this issue is. It would be extremely helpful if folks on AED therapy had their homocysteine and folate levels tested as a matter of course -- particularly if they had greater risk factors for vascular disease (age, family history, long-term polytherapy) -- but even if they were not obviously at risk.

One thing noted in the study was that folate supplementation reduced the elevated homocysteine levels to at or below those of the control group. -- which suggests that folks who are on AEDs should consider a folate supplement if they aren't taking one already.
 
I have never ever forgotten the words of the pharmacist who says "EVERY drug has side effects".

As my daughter's neurologist said, everything has risks. Each medication has risks, other interventions have risks, and doing nothing also has risks. It's a matter of weighing those risks and benefits to find the right balance for you.

And the only way to do that is to have as much information as possible! So thank you to everyone who continues to research and inform us.
 
The cited study that looked at homocysteine levels (http://www.metabolismjournal.com/article/S0026-0495(97)90087-1/abstract) looked at 130 patients, some of whom were on multiple AEDs for at least 7 years, so it's hard to know how widespread this issue is. It would be extremely helpful if folks on AED therapy had their homocysteine and folate levels tested as a matter of course -- particularly if they had greater risk factors for vascular disease (age, family history, long-term polytherapy) -- but even if they were not obviously at risk.

One thing noted in the study was that folate supplementation reduced the elevated homocysteine levels to at or below those of the control group. -- which suggests that folks who are on AEDs should consider a folate supplement if they aren't taking one already.

As far as I know, Jon's never had his hcy levels checked in the 10 years he's been on AEDs. He has had his folate checked (once, I think) and his B12 checked once, and they were both fine. He's been on a multiple vitamin supplement with extra folate, and B6 and B12 the whole time he's been on AEDs, so he's probably ok. But it would be kinda interesting to know. I wonder if the high levels of HCY reverse themselves when one goes off AEDs?
 
As my daughter's neurologist said, everything has risks. Each medication has risks, other interventions have risks, and doing nothing also has risks. It's a matter of weighing those risks and benefits to find the right balance for you.

And the only way to do that is to have as much information as possible! So thank you to everyone who continues to research and inform us.

I agree that every form of treatment has risks, however, some are certainly less risky that others. Dietary interventions obviously fall into the far less risky treatment plan, as the side effects are far less dangerous, and the efficacy is better (at least with the Ketogenic Diet). So many doctors only recommend the Ketogenic Diet as a matter of last resort, after children have been on numerous AEDs that don't work and cause irreparable harm to developing brains and bodies. I think it's high time that dietary interventions be recommended to parents (and adult patients) as first-line treatments (actually, Johns Hopkins is doing this with infants). Parents (and adult patients) should have all the information available -- efficacy of drug intervention vs. dietary, and side effects (both immediate and long-term) of drug intervention vs. dietary, plus the commitment involved in dietary intervention. Let the patient (or parents of young patients) make informed choices.

And, with dietary interventions, there may well be plenty of patients who would benefit from easier formats than the strict Keto diet (where there's all that calculating and weighing everything, etc.) -- like the LGIT, or simply eliminating gluten and sugar (changes that wouldn't harm anyone), maybe adding in a little coconut oil or MCT oil and some helpful supplements. And of course the vitamins!
 
I think there's been a lot more studies done on HCY levels in adults taking AEDs. I'll go look. However, apparently it isn't routine to test HCY levels in children or adults taking AEDs. Jon's never been tested for that, to my knowledge. Have any of you?
I never heard of it until I read Dr Perlmutter's books.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320963/

This study found that some AEDs are worse than others in raising HCY levels and depleting folate levels.

The baddies

Phenobarbital
This study said that Valproic Acid (Depakote) didn't affect HCY and folate levels in adults (although other studies found that it did in children).
Thank you for this. This re-inforces my plan to get off the pheno first and work on the depakote later if I can.

And, with dietary interventions, there may well be plenty of patients who would benefit from easier formats than the strict Keto diet (where there's all that calculating and weighing everything, etc.) -- like the LGIT, or simply eliminating gluten and sugar (changes that wouldn't harm anyone), maybe adding in a little coconut oil or MCT oil and some helpful supplements. And of course the vitamins!
On the Paleo/Primal sites, it is amazing the range of things that are cleared up for people when they just go basic gluten free and low carb. Allergies, digestive issues, aches and pains, sleep disorders, migraines, blood sugar dys-regulation, weight normalization, and so much more. For me it reduced my seizures with less dependence of meds, cleared up my chronically stuffy sinuses, made my knees stop being all creaky and achy, and made my fingernails and hair grow in strong.

It's easy to accept a basic level of , "I'm fine" until you experience a whole 'nother level of feeling *awesome* on a regular basis. What a concept!

I've seen it time after time in friends of mine who laugh at first at me and my "crazy caveman diet" but then eventually get around to giving it a try.

And, as Karen said, going gluten free and cutting the sugar and excess carbs is hardly a radical notion. Certainly nothing that is going to cause any harm.
 
Interesting that your stuffy sinuses cleared up. Several years ago, I cut most of the gluten out of our family meals (for the rest of us who weren't on the Keto diet).The immediate and unexpected result was that my husband stopped snoring! He had been a horrific snorer and probably a bit of sleep apnea. Now he very rarely snores, and that's usually because he grabbed a hamburger for lunch. He also was having arthritis in his hands, and that has faded away. And my knee and hip pains (that used to keep me up nights) are pretty much gone. I'm 55, and run up and down the stairs all day long like a teenager. I'm guessing that taking about 80 or 90% of the gluten out of our diets reduced a lot of inflammation.

Another interesting dietary thing -- I truly believe garlic and ginger and maybe hot peppers are the fountain of youth. When I was 40, we moved to Sichuan province in China, where almost every dish featured those items. The grey hair at my temples disappeared! These foods must have some sort of rejuvenating effect -- I can't imagine what they do to our brains!
 
Exactly. It's the inflammation. Since I have gotten rid of cow dairy products, the last of the sinus congestion is gone.

Garlic and ginger are not only very good for you but are yummy too. I take fresh garlic cloves and ginger root and run them through the blender together and then put the paste in a jar in the fridge for use in al sorts of things. I find once I have it in that form, I am more likely to use it than if I have to stop and peel and slice.

One of my favorite "brain food" recipes is to take a salmon fillet and smear it thickly with the garlic/ginger paste and let it sit for an hour or so. Then saute hot and fast in a combo of coconut oil and coconut aminos (a good sub for soy sauce). The garlic/ginger paste makes a kind of crispy coating and keeps the juices in.
 
Exactly. It's the inflammation. Since I have gotten rid of cow dairy products, the last of the sinus congestion is gone.

Garlic and ginger are not only very good for you but are yummy too. I take fresh garlic cloves and ginger root and run them through the blender together and then put the paste in a jar in the fridge for use in al sorts of things. I find once I have it in that form, I am more likely to use it than if I have to stop and peel and slice.

One of my favorite "brain food" recipes is to take a salmon fillet and smear it thickly with the garlic/ginger paste and let it sit for an hour or so. Then saute hot and fast in a combo of coconut oil and coconut aminos (a good sub for soy sauce). The garlic/ginger paste makes a kind of crispy coating and keeps the juices in.

When I lived in Asia, a lot of times in the open markets, there would be ladies sitting there peeling garlic, and I would always buy it from them. Now you can get it like that in the supermarket sometimes. Haven't seen peeled fresh ginger yet.
 
Multiple Mechanisms of the Ketogenic Diet

Keith just posted this on FB -- I think he might post it over here as a separate thread, but it's a great article summarizing the various mechanisms of the Ketogenic diet

https://drive.google.com/file/d/0B_1-13ATOOVDODJSdm9vYjItSm8/view?pli=1

Not surprisingly, given all the metabolic, physiological, and hormonal changes induced by the KD, there is an expanding number of potentially relevant mediators involved. However, it's unlikely that a single mechanism, however well substantiated, will explain all of the diet's clinical effects. The complex mechanisms that are involved in seizure genesis and epileptogenicity, as well as the diverse treatments taken clinically, strongly suggest that successful approaches, including the KD, are based on fundamental mechanisms that are multiple, parallel, and at times synergistic.
 
I hope he does continue to post things over here too. Not everybody does facebook. Thanks for spotting that, Karen.


From the abstract of that paper:

"The scientific literature involving the KD strongly supports the notion that epilepsy may indeed in part represent a "metabolic disease". and that this concept could serve as a novel framework for the development of more effective anti-seizure drugs.

This is a fascinating book about cancer by Dr. Thomas Seyfried which says much the same thing:
[ame="http://www.amazon.com/Cancer-Metabolic-Disease-Management-Prevention-ebook/dp/B00852YXZS/ref=mt_kindle?_encoding=UTF8&me="]Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer 1, Thomas Seyfried - Amazon.com@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41eGlQ%2ByPML.@@AMEPARAM@@41eGlQ%2ByPML[/ame]

I only started to get a handle on my epilepsy as I was researching ways to keep my cancer from coming back and waiting for my bald head to grow in again. The more research I did, the more the two started to dovetail. The same framework and therefore the same treatment applies to both, IMO.
 
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That's good information about high homocysteine levels associated with seizure. Here's how it's related to diet in my view:

Good dietary changes shift flora, raising lactic acid bacteria like Lactobacillus and Bifidobacteria. These bacteria manufacture vitamin B12 and folate which lower homocysteine.
http://www.ncbi.nlm.nih.gov/pubmed/24613434
http://www.ncbi.nlm.nih.gov/pubmed/17162326

The lactic acid bacteria also tend the lining of the small intestine to help with dietary absorption. And they help lower offending, overgrown organisms like gram-negative bacteria and clostridium which shouldn't be in the small intestine in large amounts.

Another huge connection with vitamin B12 and folate is they are important cofactors in serotonin synthesis where low serotonin is associated with glutamate excitotoxicity and seizure. High homocysteine is associated with low serotonin:
http://www.ncbi.nlm.nih.gov/pubmed/24309856
http://ajop.co.za/Journals/January2012/Elevated plasma homocysteine.pdf

Here's a new paper about how a strain of Lactobacillus (Culturelle) apparently balances serotonin levels in the gut where high serotonin levels are associated with diarrhea : http://onlinelibrary.wiley.com/doi/10.1111/nmo.12615/abstract
 
You mentioned the clostridium bacteria. My neighbor is just getting over a horrendous bout of C diff. She had a baby a little less than a year ago but had all kinds of medical complications necessitating massive amounts of antibiotics.

Her's reads like a textbook case out of Dr. Perlmutter's Brain Maker. Antibiotics for one condition, trash your gut microbiome, something else springs up and overgrows, more antibiotics, and around we go.

(To anyone who has not read Dr Perlmutter's books, neither he nor I would want anyone to get the impression that he is against all anti-biotics all the time. He is a doctor and he realizes that they do save lives. He also realizes that they are often over-prescribed and that, even when they are necessary, care needs to be taken to not have the unintended consequences be worse than the original problem.)
 
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Study: probiotics given in infancy prevent neuropsychiatric disorders

http://www.nature.com/pr/journal/v77/n6/pdf/pr201551a.pdf#affil-auth

Study of 75 infants. Part of the group got Lactobacillus for first 6 mths of life. The other half got placebo. The children were followed for 13 years.

At age 13, 6 of the 35 children receiving placebo (17%) had been diagnosed with ADHD or Autism. None of the children in the probiotic group were diagnosed with ADHD or Autism.

The placebo children later diagnosed w/ Autism or ADHD had lower number of Bifidobacterium in their gut in their first 6 months of life.
 
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