Dietary changes and seizure control

[Jay1]

We had a GI work-up, and the GI doc said Jon had Inflammatory Bowel Disease, but could not suggest a remedy. I consulted with a pediatrician in Thailand, whose specialty was nutrition (and the Keto diet). She said that, due to the tummy flu, Jon's gut was chronically inflamed, and he was not absorbing fats (or meds) properly. Thus, he wasn't getting enough of the important fats from the diet to make it work. So, she worked with us on healing the gut. A very simple diet for a few weeks of foods that were helpful for inflammation and easily digested, a round of probiotics, pancreatic enzymes (to break down fat molecules), and zinc supplement (which helps heal gut). After a few weeks on this regime, the seizures faded away, and within 2 months stopped altogether. And, now, 2 1/2 years later, he remains seizure free.

Hi Karen and AlohaBird,

I have suspected the gut issues and antibiotics usage after reading Dr. Perlmutter's "Brain Maker" book. However, the neurologist has not paid any attention to it. In any case, the neurologists have not been very helpful and still keep pestering me for starting my son on AEDs.

I do give Probiotic supplement orally to my son. Can the probiotic bacteria survive the stomach acid?

Dr. Perlmutter mentioned a case where the kid improved significantly within one day after the kid's mother gave her kid very high amounts of Probiotics (1200 billion units). They used a medical term "enema" for doing it. I want to do it for my son but do not know how? Is edema like a rectal syringe for pumping water dissolved Probiotics capsules inside?

There is mention of Fecal Microbial Transplant also in his book. I am wondering if anyone on this forum has used FMT approach and can share their experiences.

I am thinking of flying to Florida and taking an appointment with Dr. Perlmutter.

Regards,
Jay

 

[Jay1]

Medical Marijuana Articles


Link to Article in Time Magazine on "Medical Marijuana in Treating Epilepsy". Parents say that it works while majority of neurologists say that there is no evidence of it working in majority of cases and EEG remains same which suggests a placebo effect is at work.

http://time.com/pot-kids/


Survey Results - Use of medical marijuana in treating epilepsy

http://onlinelibrary.wiley.com/journal/10.1111/%28ISSN%291528-1167/homepage/survey_results__use_of_medical_marijuana_in_treating_epilepsy.htm



Controversy in Epilepsy - The case for assessing cannabidiol in epilepsy

http://onlinelibrary.wiley.com/enhanced/doi/10.1111/epi.12635/

 

[Bidwell]

The article I read said that the EEG remains the same which "suggests" a placebo effect is at work. "Suggests" and "is most likely" are different pictures.

 

[Jay1]

The article I read said that the EEG remains the same which "suggests" a placebo effect is at work. "Suggests" and "is most likely" are different pictures.

Hi Bidwell,

You are right and I have updated my post with correct wording.

Regards,
Jay

 

[Keith]

This is a very constructive thread. One thing I'd like to add about coconut oil is how it's known to be a powerful antimicrobial. I suspect this is the main mechanism behind its use in seizure control.

Indeed, studies have called into question the idea that raising ketones is mechanism since ketones may actually be lowered over time on the ketogenic diet. A couple of research papers even show microbiota regulating ketogenesis!!

So, I tend to believe coconut oil is shifting gut flora in the right direction, doing things like lowering LPS toxin-producing gram-negative bacteria, overgrown Proteobacteria and toxic Clostridium overgrowth. The lauric acid in coconut oil isn't just antimicrobial, but it also makes cell walls more permeable to address intracellular flora balance, the microbes living inside our cells toying with metabolism.
http://www.nutritionandmetabolism.com/content/10/1/6
http://www.hindawi.com/journals/bmri/2013/954542/
http://www.ncbi.nlm.nih.gov/pubmed/24328700

 

[KarenB]

Here are the published medical papers which prove that AEDs cause more seizures.


(1) AEDs cause inflammation in brain tissue and weaken blood brain barrier.

http://www.hindawi.com/journals/mi/2014/901902/

Did you perhaps link to the wrong study regarding AEDs causing brain inflammation and weakening blood brain barrier? The link above is an excellent and interesting article about the connection between inflammation and epilepsy. But it just says that AEDs don't work for about 30% of folks with epilepsy, and they cause cognitive issues for many. I can certainly say both have been true for Jonathan!

Oops, sorry, I posted this when I was still reading my way through the last page, and now I see that you did put the wrong link. Hopefully you can find that article again.

 

[KarenB]

(3) Epilepsy and Inflammation - Inflammation decreases Seizure threshold and causes autism, seizures and memory deficits.

University of Milan (Italy), University of Amsterdam (Netherlands), School of Medicine at UCLA, Los Angeles, University of Calgary (Canada)


http://www.gutbrainaxis.org/pdf/vezzani%20epilepsy%20and%20brain%20inflammation.pdf

I found this article interesting, especially the last part about autism caused by inflammation (from various sources), and suggests that brain inflammation caused by seizures can lead to autism in some individuals.

The link between autism and seizures is well-known; however, usually a child is diagnosed with autism as a toddler or preschooler, and then seizures may come later. In Jon's case, however, he began to display autistic regression (loss of speech, social withdrawal, lack of eye contact, etc.) when he was about 6, after the seizures got pretty bad. He actually wasn't diagnosed with autism until last year, when he was age 10.

 

[KarenB]

Oxidative Stress


Various antiepileptic drugs may impair the endogenous antioxidative ability to prevent oxidative stress. Therefore, some antiepileptic drugs, especially from the older generation, may trigger oxygen-dependent tissue injury. The prooxidative effects of these antiepileptic drugs might lead to enhancement of seizure activity, resulting in loss of their efficacy or apparent functional tolerance and undesired adverse effects.


https://www.ncbi.nlm.nih.gov/pubmed/23730257



In the serum of children and adolescents with epilepsy, the oxidants-antioxidants balance is modified by antiepileptic therapy.

https://www.ncbi.nlm.nih.gov/pubmed/15174247



The Role of Reactive Species in Epileptogenesis and Influence of Antiepileptic Drug Therapy on Oxidative Stress

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520043/pdf/CN-10-328.pdf



Antioxidants as a preventive treatment for epileptic process: a review of the current status

https://www.ncbi.nlm.nih.gov/pubmed/25977679

I found the 1st and 4th link above quite interesting (I couldn't understand the 2nd, and I think #3 was the same as #1).

Anyway, the point that some AEDs can actually make seizures worse was certainly true of our son. I'm not sure if it was due to oxidative stress or something else, though. While he was on Trileptal, his seizures increased from about 1 a week to several a week (and it also made him psychotic and extremely aggressive). Diazepam also increased his seizures, as did Keppra. In fact, I remember one time we were in the hospital, and twice, after getting Keppra by IV, he had a seizure within 30 minutes. When he was on those 2 meds at the same time, his seizures were a nightmare - multiple seizures a day. We slowly weaned him off the Diazepam, and after that wean was completed, his seizures were down to about 1 a day. Then we weaned the Keppra. His last seizure was 1 week after the Keppra wean was completed.

ETA: also, with all 3 of these meds, he became extremely agitated, and super-hyperactive, and very aggressive.

Jon takes a supplement (Nutrivene) that has mega-vitamins and other anti-oxident ingredients that are helpful for preventing oxidative stress. I have a habit of logging his seizures, along with any changes in meds, diet and supplements. At one point, we considered taking him off the Nutrivene because it was expensive (and customs in Thailand wouldn't permit us to have it mailed in -- without a $100 bribe, that is). Well, when we weaned him down to just 1/2 a dose, what a nightmare! His tonic-clonics instantly increased at an alarming rate. Within a week, he was back on the Nutrivene, and the seizures went back down (didn't stop, but fewer).

Of course, the best thing is to load up the diet with antioxident foods. However, Jon isn't able to eat very many leafy greens because of his digestive issues (although he absolutely loves them) and he's allergic to nightshades (eggplant, tomato, peppers). He does eat lots of veggies like zucchini and other squashes and pumpkin and carrots and broccoli and fruit like berries, etc.

 

[AlohaBird]

Sometimes using that Thanks button for a post (or two) isn't quite enough. AlohaBird hit the nail on the head several times here. I hope Jay that you are able to understand what she is telling you. How you present information is important.

And thanks KarenB for touching on "the Keith controversy". Keith started out much like Jay - very zealous and with a tendency to overstate things. I got a lot of complaints about his posts. However, Keith was able reign it in (ie. conform to the forum guideline) and he did post some interesting info/ideas. I'm glad to hear that it led to at least one member finding something that worked. Honestly, that really makes all the headaches that come with administering a forum worthwhile.

Thanks Bernard. I noticed the similarity in posting style right away. Also the similarity in the push-back reaction from some forum members.
I don't think Keith was wrong at all, I just think he was a few years ahead of the science getting solid enough to give him a place to stand. And he did have a tendency to state things as authoritative fact when they were only at the opinion+speculation stage as far as evidence.

But I'm glad he stuck around and was able to help people like Karen and Jonathan and I hope people will go back and revisit his threads with an open mind.
Dr. Perlmuttter is now, with his 2015 book Brain Maker, getting around to making many of those "nutty" things Keith was going on about downright mainstream.

What Jay needs to learn how to do is say something like, "These are some interesting articles that propose what might be a way in which AEDs contribute to mitochondrial dysfunction which could contribute to oxidative stress and therefore might be associated with neuronal cell damage".
Because that's what those articles are. They are not wrong or insignificant or invalid. They are just not proof of anything.
That doesn't mean we can't discuss them. But if they are presented as being proof positive when they are not, the push back will be to dismiss the whole idea and the poster. i don't want that to happen if possible.

 

[AlohaBird]

I have suspected the gut issues and antibiotics usage after reading Dr. Perlmutter's "Brain Maker" book. However, the neurologist has not paid any attention to it. In any case, the neurologists have not been very helpful and still keep pestering me for starting my son on AEDs.

I do give Probiotic supplement orally to my son. Can the probiotic bacteria survive the stomach acid?

Dr. Perlmutter mentioned a case where the kid improved significantly within one day after the kid's mother gave her kid very high amounts of Probiotics (1200 billion units). They used a medical term "edema" for doing it. I want to do it for my son but do not know how? Is edema like a rectal syringe for pumping water dissolved Probiotics capsules inside?

There is mention of Inter Fecal Transfer also in his book. I am wondering if anyone on this forum has used IFT approach and can share their experiences.

Yes, probiotics can survive the stomach acid if you get a good one.
I think the term you are looking for is "enema" not "edema". Edema means swelling in tissues such as when you have a bruise or a twisted ankle.
An enema for probiotic purposes is a rectal application of a concentrated solution of probiotics delivered right to where they are needed. Personally I would only resort to this option if the oral administration of pills had failed. Your son seems to be doing well so you might not need to "go there".

The other extreme case measure Dr. Perlmutter talks about is called a fecal microbial transplant or FMT (not sure where you got the term IFT). FMT is not yet approved by the US FDA so when Dr. Perlmutter suggests it for some clients whose gut flora are totally decimated, they have to go to England to have it done.

So, in order of severity:

Oral probiotics+probiotic foods+prebiotic fiber is the first line of treatment.
Probiotic enemas if the above fails.
Fecal microbial transplant if all of the above fails.

This is a very constructive thread. One thing I'd like to add about coconut oil is how it's known to be a powerful antimicrobial. I suspect this is the main mechanism behind its use in seizure control.

Indeed, studies have called into question the idea that raising ketones is mechanism since ketones may actually be lowered over time on the ketogenic diet. A couple of research papers even show microbiota regulating ketogenesis!!

So, I tend to believe coconut oil is shifting gut flora in the right direction, doing things like lowering LPS toxin-producing gram-negative bacteria, overgrown Proteobacteria and toxic Clostridium overgrowth. The lauric acid in coconut oil isn't just antimicrobial, but it also makes cell walls more permeable to address intracellular flora balance, the microbes living inside our cells toying with metabolism.
http://www.nutritionandmetabolism.com/content/10/1/6
http://www.hindawi.com/journals/bmri/2013/954542/
http://www.ncbi.nlm.nih.gov/pubmed/24328700

Hiya Keith! Good to see you back. Yes, coconut oil is anti bacterial and anti fungal. It also cures athlete's feet and keeps your pits from getting stinky when applied in the appropriate places. Seriously.

Dr Perlmutter had an interesting section in Brain Maker all about the recent explosion in C. Diff infestations. This is really becoming a major medical issue.

 

[MichaelJO7]

I totally agree that inflammation is the key.

The flaw I see in all of those studies is that they talk about inflammation as a "mediator" and a "biomarker" for epilepsy but none of them delves into the root question of where the inflammation comes from in the first place. Instead of wasting time developing a drug that will lower inflammation, we could be lowering it by diet.

This is a problem with many studies, and why I don't like too many citations. I want to "own" the truth as much as possible. This is why I desperately want to understand the science of what people are saying, because then I can determine if the studies are flawed, and I can make better informed decisions.

 

[HopeCoconutWorks]

Hello Karen,

Can you give some example of foods you guys were having for Jon from the advice of the Thailand pediatrition? We are trying to get my son more option of low carb, gluten free foods but seems very limited choices

 

[KarenB]

Hi Karen and AlohaBird,

I have suspected the gut issues and antibiotics usage after reading Dr. Perlmutter's "Brain Maker" book. However, the neurologist has not paid any attention to it. In any case, the neurologists have not been very helpful and still keep pestering me for starting my son on AEDs.

I do give Probiotic supplement orally to my son. Can the probiotic bacteria survive the stomach acid?

Dr. Perlmutter mentioned a case where the kid improved significantly within one day after the kid's mother gave her kid very high amounts of Probiotics (1200 billion units). They used a medical term "edema" for doing it. I want to do it for my son but do not know how? Is edema like a rectal syringe for pumping water dissolved Probiotics capsules inside?

There is mention of Inter Fecal Transfer also in his book. I am wondering if anyone on this forum has used IFT approach and can share their experiences.

I am thinking of flying to Florida and taking an appointment with Dr. Perlmutter.

Regards,
Jay

Yes, the probiotics survive the stomach acid. Jon's doctor who prescribed the probiotics for him just gave him a 2 week treatment. She (and also the dietitian at the Charlie Foundation) cautioned against daily ongoing use of probiotics, because it can the gut can get too much bacteria (even good bacteria). Jon only gets probiotic now if he has to be on antibiotics (and he hasn't needed that since 2013) or if he has a flare-up of his Inflammatory Bowel Disease (he just finished a round).

After his first dose of probiotics, he had a cluster of seizures a few hours later. I think that might possibly have been from toxins released from the die-off of the bad bacteria and yeast. I waited a couple days until things calmed down, and then gave it again. This time, no problem.

For Jon, the probiotics work very quickly. He had a recent flare-up of IBD, where he was having diarrhea every day for over a week. The diarrhea stopped after just one dose of probiotics.

I think you mean probiotic enema, not edema. I've heard of this as a treatment for Crohns, etc. This study investigated it as a treatment for Ulcerative Colitis, and found it did bring quicker remission at high doses, but low doses weren't much different than placebo. http://www.biomedcentral.com/1472-6882/10/13

ETA: oops -- did it again! Posted, and then saw that Aloha had already explained everything.

Aloha did mention prebiotics. One prebiotic is almonds. Jon has trouble digesting nuts, but he can digest nut flour, so we use almond flour in his morning muffins. Almond milk is also good. It's easy to get the unsweetened almond milk now -- most supermarkets carry it.

 

[KarenB]

Hello Karen,

Can you give some example of foods you guys were having for Jon from the advice of the Thailand pediatrition? We are trying to get my son more option of low carb, gluten free foods but seems very limited choices

OK, let me first remind you that Jon is on the Ketogenic Diet for seizures, so he gets extremely low carbs and high fats.

This was what his doc prescribed, and this is also what we do whenever he has a bad flare-up of inflammatory bowel disease or gets a tummy flu (which actually has only happened about twice in his life -- he has a good immune system).

1) Day 1 - liquid fast, to let gut rest (drinks homemade electrolyte drink sweetened with Stevia, bone broth, and can eat plain gelatin sweetened with Stevia, which is an anti-inflammatory) (I don't use the Stevia available in supermarkets, as it's mixed with nasty stuff like maltodextrin. We buy the leaves and then brew them like tea or we buy the pure drops)
2) Day two -- cooked mashed carrots and olive oil and MCT oil. We mix the oil in with the mashed carrots. Carrots are anti-inflammatory, and easily digested. Cooking and mashing makes them more easy to digest. Olive oil is an anti-inflammatory. MCT oil is the easiest fat to digest. He also continues with the bone broth and gelatin and electrolyte drink.
3) Day three: boiled chicken with the carrots and oils (I cook the chicken the first day and use the bone broth, and then he gets to eat the chicken later)

In the next few days we gradually add in other easy to digest veggies like asparagus and zucchini. We stay away from dairy and eggs and fruit for a week or two until his system gets straightened out, and then that all gets gradually added in.

Jonathan never eats gluten or any grains like wheat, rice, corn, oat. And no sugar.

When he's healthy, a normal diet for him would be something like this:
1) Breakfast: big muffin made from flaxseed meal, almond flour, pumpkin, apple, egg, coconut oil and MCT oil and cinnamon and baking soda and calcium powder.
2) Lunch: cheese, olives, choice of fruit and/or veggies (berries, melon, carrots, grapes, etc.), and MCT oil mixed with a little bit of mayo
3) Supper: Chicken, veggie (zucchini, summer squash, broccoli, etc.), MCT oil & mayo, and small amount of fruit for dessert

 

[HopeCoconutWorks]

Thanks a lot, Karen. One quick question .... I know many people will avoid milk ... but isnt Cheese also dairy? Why seem people are taking cheese and not milk? As for fruits, do you think strawnerry, mango, grapes, watermelon, etc can trigger seizure?

We found out 2 days ago our son front tooth (he fell and hit his front tooth late last year I believe) has infection and dentist suggest to have it taken out ASAP. We are not sure if the seizure caused by the tooth infection though I did a bit of google on web there might be link between seizure and dental health. He had no problem with any fruits before, so just wondering if these fruits can actually trigger the seizure. He had another fall at back of his head late Jan this year, but CT scan shows no abnormality ... not sure if the seizure caused by these 2 falls either ... If the seizure did not caused by the 2 falls ... then we feel its the nutrition deficiency .... we are using the 3 tbsp ccn oil and 1 tbsp MCT oil now, giving epson salt foot bath and transdermal magnesium oil ... will update the progress soon.

 

[Jay1]

This is a very constructive thread. One thing I'd like to add about coconut oil is how it's known to be a powerful antimicrobial. I suspect this is the main mechanism behind its use in seizure control.

Indeed, studies have called into question the idea that raising ketones is mechanism since ketones may actually be lowered over time on the ketogenic diet. A couple of research papers even show microbiota regulating ketogenesis!!

So, I tend to believe coconut oil is shifting gut flora in the right direction, doing things like lowering LPS toxin-producing gram-negative bacteria, overgrown Proteobacteria and toxic Clostridium overgrowth. The lauric acid in coconut oil isn't just antimicrobial, but it also makes cell walls more permeable to address intracellular flora balance, the microbes living inside our cells toying with metabolism.
http://www.nutritionandmetabolism.com/content/10/1/6
http://www.hindawi.com/journals/bmri/2013/954542/
http://www.ncbi.nlm.nih.gov/pubmed/24328700

Hi Keith,

You are awesome and light years ahead of everyone else on this forum. Even Dr. Perlmutter is catching on that gut brain connection almost three years after you. I have already become one of your biggest fan and will want to keep in touch with you even outside this forum.

It will take me a few days to read all of your posts. It is very important for us to continue hearing from you. If it was not for pioneers like you, we will still be learning that earth is the center of universe and all planets revolve around the earth.

I have no doubt in my mind that your noble mind and heart wants to eradicate this stupid disease and do not want to see anyone suffer.

Thank you very much.

Best Regards,
Jay



What is your opinion about Coconut Oil? Will you consider MCT oil to be inferior since it is made after removing lauric acid from coconut oil?

Are there any clinical trials comparing MCT oil and Coconut Oil?

 

[AlohaBird]

HCW, In answer to your question about dairy products. Cheese is dairy but it also is a source of probiotics.
This: http://www.marksdailyapple.com/dairy-intolerance/#axzz3fS28eNNl
Is the most complete article I have ever read about dairy.

Personally I have cut out all cow dairy and reserve goat cheese for a nice treat.

Fruit triggering seizures? Well too much fruit can take you out of ketosis. If your goal is to stay in ketosis you need to watch the total carb intake. Fruit is just one part of that.

I hope you are listening to the dentist about getting that infected tooth out ASAP. An infection like that can crawl back up into the jaw bone and do major damage leading to root canals and more extractions if it is let fester.

 

[Jay1]

Video Interview - 80 minute long interview with Dr. David Perlmutter, a renowned neurologist

https://www.youtube.com/watch?v=LTj9Vfx3CNg



Video Interview - Dr. Perlmutter: Brain Maker, Fecal Transplants, and How to Heal Your Gut with Real Food

https://www.youtube.com/watch?v=baJqlQVK-9E

 

[lnsiu]

I thought this was interesting in regard to the fat oxidation, inflammatory disscussion:

During exercise, IL-6 is produced by muscle fibers via a TNF-independent pathway. IL-6 stimulates the appearance in the circulation of other anti-inflammatory cytokines such as IL-1ra and IL-10 and inhibits the production of the proinflammatory cytokine TNF-α. In addition, IL-6 enhances lipid turnover, stimulating lipolysis as well as fat oxidation.

m.jap.physiology.org/content/98/4/1154.long

I will watch that video later jay.

Edit: I have relatives with type2 diabetes.

 

[KarenB]

Thanks a lot, Karen. One quick question .... I know many people will avoid milk ... but isnt Cheese also dairy? Why seem people are taking cheese and not milk? .

The main reason Jon doesn't drink milk is that it has too much sugar (lactose), too high in carbs for the ketogenic diet. Some people, however, have an allergy to milk (which could trigger an anaphalaxic reaction and possibly seizures) or they have an intolerance to lactose, which could cause digestive upset, which could maybe trigger seizures (seizures could be triggered by any sort of stress to the body, especially in individuals with low seizure threshold).

Most of the lactose in milk is in the whey, very little in the fat. So, high fat forms of dairy -- such as butter or cream or cheese or full fat yogurt have only small amounts of lactose -- so may be tolerated by people who can't tolerate milk. And, because milk fat has very little sugar/carbs, it can be consumed by people on the Ketogenic diet. Also, the fermentation process in dairy products such as yogurt, kefir and cheese breaks down the lactose into lactic acid, making it even easier to digest. Yogurt and kefir have loads of healthy bacteria for the gut. Jon can have small amounts of these on the diet, if they are full-fat and no sugar.

Another thing, with foods like egg and dairy...some people who are not allergic or intolerant of these foods can develop a temporary allergy/intolerance following an intestinal virus, so they are best avoided for a week or two after recovering from vomiting/diarrhea.