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View Poll Results: How much coconut oil do you take every day?
None 33 68.75%
1 tablespoon 4 8.33%
2 tablespoon 2 4.17%
3 tablespoon 3 6.25%
4 tablespoon 3 6.25%
5 or more tablespoon 3 6.25%
Voters: 48. You may not vote on this poll

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  #1  
Old 06-29-2015, 05:05 AM
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Dietary changes and seizure control


I am surprised that no one has even mentioned about these foods to eliminate seizures. My 9 year old son had two 3 hour long grand mal seizures and the doctors could not control it even after pumping lot of medicines in my son's body. My son has not had any kind of seizure in last 6 months. He does not take any medicines and I am 100% positive that he will never again have seizures in his life.

(1) Get cold pressed organic coconut oil. I pay $16 for 56oz jar of coconut oil. Mix coconut oil in everything that you eat, Try to consume 8 tablespoons of coconut oil every day - 4 in morning and 4 in night.

Coconut oil works by producing ketones in your body and maintains ketosis. Ketosis controls seizures even where medicines fail to work. (This is the only oil in world which has this ability. Just remember to get cold pressed organic coconut oil). There is no cholesterol in this oil. Increase the consumption slowly to make the body used to it. Sudden more amount of coconut oil can cause stomach ache and diarrhoea.

www DOT hindawi.com/journals/crinm/2013/809151 - Vanderbilt University Neurology department research where they used MCT (coconut oil) to reduce seizures in a 40 year old man by 97%

onlinelibrary DOT wiley.com/doi/10.1111/j.1528-1167.2008.01870.x/epdf - Randomized double blind study of MCT oil in hospitals in London (United Kingdom) (group size - 145 children)



(2) Get raw turmeric from grocery store. I pay $4 for one pound of turmeric. Peel outer layer of turmeric and eat it. Keep daily consumption between 10-15 grand mal.

Turmeric has 150 different ingredients which repair and build new neurons and neural circuits.



(3) Eat avocados. It provides almost 15 different kind of amino acids.

American diet is highly deficient in Omega-3 fatty acids while brain is 70% fatty tissues. Avocados have high levels of Omega 3 fatty acids and numerous vitamins and minerals and about different amino-acids.



(4) Eat garlic, onions, chicory root etc. These are excellent source of prebiotics and provide nutrition for good bacteria in your gut.


(5) Substitute cow milk with goat milk. Goat milk contains Medium chain fatty acids which is very nourishing for brain.


(6) Take magnesium supplement.

American diet is highly deficient in Magnesium but Magnesium is required in more than 400 chemical processes happening in body. Just imagine what will happen to food in refrigerator if I turn off electricity for 24 hours


(7) Take supplements for GABA and L-Carnitine


( Always get at least 9-10 hrs of good sleep.




Things to avoid

(1) Stop eating food in fast food and other restaurants. Most of the fast food have MSG which is responsible for causing slow death of brain neurons.


(2) Remove consumption of bad carbohydrates such as bread.

Last edited by Nakamova; 06-29-2015 at 08:54 AM.
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Old 06-29-2015, 07:48 AM
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Jay1

This is a very incorrect statement to make, if it were true there would be no need for us to be here, so please do not say something Eliminates epilepsy or a type of seizure. For you maybe but not everybody else the doctors would be prescribing it already This is a very untrue statement to make.
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Old 06-29-2015, 08:07 AM
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Yup good info thanks Jay1...I've been using coconut oil for a while now but I didn't know about the stomach ache/diarrhea issues...well now I do (learn something new everyday lol)

My diet is very healthy already and I don't eat any processed frankenfoods (gag) or other disgustingly revolting garbage...just fresh and nutritiously delicious yummy in the tummy (and good for the belly lol) foods...I exercise a lot but I have high expectations for myself since your worst enemy (or best friend) is you and no one else...sometimes I have to remind myself to dial it back a bit and rest...not just the body but also the mind and spirit...they need to be in healthy/happy shape too ya know!

Now if we all can just get some quality rest... (goodnight )

Last edited by MrE; 06-29-2015 at 08:22 AM.
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Old 06-29-2015, 08:52 AM
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Hi Jay1, It's terrific that those dietary changes have helped your son! There's a big interest in diet and seizure control here at CWE and it's helpful to hear what particular steps may have led to you and your son's success.

As Fedup points out though, it's important to be careful of making absolute statements while sharing your individual experience. I know you weren't insisting that everyone could achieve seizure control by following the steps you took, but it can come across that way. Everyone should keep in mind CWE’s policy when posting:
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No member of the forum should be considered as a medical professional unless they are clearly identified (vetted by the site administrators) as such. This site does not dispense or publish medical advice. All published information, recommendations and opinions are offered for informational purposes only. Epilepsy patients, visitors and members are advised to discuss their care (and any information published on this site) with their own doctors.
Otherwise, I will need to add this statement to every thread and post. And that would be tedious.
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Old 06-29-2015, 08:59 AM
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Jay1, you might be interested in the recent threads below discussing dietary changes that members are taking to achieve better seizure control. I think you'll find that there are overlaps and commonalities (including coconut oil) between their experiences and yours.
http://www.coping-with-epilepsy.com/...l-n-1-a-24880/
http://www.coping-with-epilepsy.com/...ference-25303/
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Old 06-29-2015, 09:10 AM
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Originally Posted by Jay1 View Post:

Things to avoid

(1) Stop eating food in fast food and other restaurants. Most of the fast food have MSG which is responsible for causing slow death of brain neurons.


(2) Remove consumption of bad carbohydrates such as bread.


But these are the two things I totally agree on.

Like Fedup said, no one can be sure they will NEVER have a seizure again, unless they claim to be god. I certainly thought the same after my brain surgery, but was I wrong!! I went nearly TWO YEARS seizure free, so for you to say your son will never have a seizure again is being a bit brazen.

I also have Type 1 Diabetes, so I do watch by carbs and eat healthy. I don't take Coconut Oil or Tumeric. I don't take garlic or eat onions on a regular basis, but I could eat avocados every day since they are low in carbs. I just don't because all of this gets expensive and living with Type 1 diabetes is expensive! Insulin + diabetes supplies isn't cheap.
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Old 06-29-2015, 03:06 PM
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Originally Posted by Cint View Post:
But these are the two things I totally agree on.

Like Fedup said, no one can be sure they will NEVER have a seizure again, unless they claim to be god. I certainly thought the same after my brain surgery, but was I wrong!! I went nearly TWO YEARS seizure free, so for you to say your son will never have a seizure again is being a bit brazen.

I also have Type 1 Diabetes, so I do watch by carbs and eat healthy. I don't take Coconut Oil or Tumeric. I don't take garlic or eat onions on a regular basis, but I could eat avocados every day since they are low in carbs. I just don't because all of this gets expensive and living with Type 1 diabetes is expensive! Insulin + diabetes supplies isn't cheap.
Why do you call it expensive?

One Avocado - $1 from Sams Club or Costco or any other store
Coconut oil - $16 for one month supply
Turmeric - $4 for one 1 lbs (one month supply)


Total cost in one month = $30 (avocado) + $16 (coconut) + $4 = $50/month


Do you know what will happen if everyone controlled seizures using coconut oil? The pharma companies will lose billions of dollars.
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Old 06-29-2015, 03:07 PM
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Originally Posted by Fedup View Post:
Jay1

This is a very incorrect statement to make, if it were true there would be no need for us to be here, so please do not say something Eliminates epilepsy or a type of seizure. For you maybe but not everybody else the doctors would be prescribing it already This is a very untrue statement to make.
Can the moderator please enable these links for studies done at medical institutions? All of us non-medical professionals have a right to read them.

There is a big financial incentive for doctors and pharmaceutical companies to keep you sick. ( $16 for one month supply of coconut oil vs thousands of dollars every month ).


Vanderbilt University Neurology department research where they used MCT (coconut oil) to reduce seizures in a 40 year old man by 97%

www DOT hindawi.com/journals/crinm/2013/809151


Randomized double blind study of MCT oil in hospitals in London (United Kingdom) (group size - 145 children)

onlinelibrary DOT wiley.com/doi/10.1111/j.1528-1167.2008.01870.x/epdf
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Old 06-29-2015, 04:25 PM
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Quote :
There is a big financial incentive for doctors and pharmaceutical companies to keep you sick.
I'm as skeptical as you are about Big Pharma and modern healthcare, but none of the neurologists I've seen are interested in keeping me sick.

Below are the links you reference:

http://www.hindawi.com/journals/crinm/2013/809151/
http://onlinelibrary.wiley.com/doi/1...8.01870.x/full
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Old 06-29-2015, 05:46 PM
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Originally Posted by Jay1 View Post:
Why do you call it expensive?
I was saying living with Type 1 Diabetes + insulin and the diabetes supplies is expensive, NOT the avacados, coconut oil and turmeric stuff! Sorry I didn't make myself clear.

All of this has been discussed before on CWE.
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Old 06-29-2015, 06:17 PM
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Originally Posted by Nakamova View Post:
I'm as skeptical as you are about Big Pharma and modern healthcare, but none of the neurologists I've seen are interested in keeping me sick.

Below are the links you reference:

http://www.hindawi.com/journals/crinm/2013/809151/
http://onlinelibrary.wiley.com/doi/1...8.01870.x/full

And here is an article by a former Air Force dr. concerning coconut oil:

https://www.sciencebasedmedicine.org/coconut-oil/

I find this one interesting because my father was a big fan of NaturoPath and the Natural way of healing with herbs, etc. The sad thing is he died last October of kidney failure due to a stroke 11 years prior to that. And because of his stroke, his memory was worse than mine, due to the brain surgery I had for my seizures. But he believed he was going to be "cured" by all this "herbal" medicine. So sad to see him just slowly deterioate over those long years.
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Old 06-29-2015, 08:46 PM
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Jay1, I would be interested in knowing how you came to this regime that is working so well for your son. Was it trial and error? Did you have advice? How did you get to this?
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Old 06-30-2015, 02:35 AM
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Originally Posted by Bidwell View Post:
Jay1, I would be interested in knowing how you came to this regime that is working so well for your son. Was it trial and error? Did you have advice? How did you get to this?

My 9 year old son had a grand mal seizure in school on December 11, 2014 and then another one happened at home on January 8, 2015. The second one was very bad and continued for 4-5 hours even in emergency room. I thought that my son was going to die.

My son stabilized but he remained intubated and slept for more than 24 hours. During hospital stay, I started searching on small cellphone screen about epilepsy and seizures and what do people do. I came across a blog where people complained about various side effects of a commonly prescribed drug Keppra. I did more research and I read that this drug makes people suicidal and depression prone among all side effects. Someone mentioned something about Ketogenic diet.

After two days of hospital stay, many neurologists started telling us to get my son started on Keppra. I did not know what to do but ultimately decided to wait for couple of days before deciding and took my son home without any Keppra prescription. Couple of neurologists scared me but others assured that nothing will happen in next 1-2 days as my son has been heavily medicated in emergency room.

I hardly slept during next 3 months and my time was spent reading medical literature. I read on a discussion forum that some people used to have seizures all their life but have been seizure free after they started on coconut oil. Then I found some more people saying the same thing about coconut oil. It started me on a quest to find more and more information. Then I came to know about Super Foods and realized that we hardly eat any one of them.


I take my son to hospital every two months for Comprehensive blood profile and Ketones test. The last three visits have shown that more than 30-40 parameters in blood continue to be normal. He continues to be in ketosis. He is very active in sports and plays basketball, baseball, cricket and various other games.


I came across Charlie Foundation website and then happened to see movie "First Do no harm".


My bookmarks are full of more than 500 medical studies written by different medical doctors. I am not able to post the links as I am new on this website.



Definitely, it is not trial and error. Advice - Yes, from the collective wisdom of people on internet and then verifying it with published medical research papers and clinical trials.


I happened to read Florida based neurologist Dr. Perlmutter 's book a few days ago and it reconfirmed my own research.



Everyone' situation is unique and it may not work for them. However, they have every right to make an informed decision. Does it happen? Nope. Most of the decisions are taken in fear.

Last edited by Jay1; 06-30-2015 at 03:28 AM.
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Old 06-30-2015, 08:29 AM
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Thanks so much for telling us about your journey and about your devotion to your son's well being. I am so heartened to know how well he is doing. I also want to let you know that I myself follow a regime close to Perlmutter's.

It really seems true that for most people in urgent situations, decisions are made in fear, and it is also true that many of us reading your posts are well aware that mainstream medicine in western countries does not offer the means of making informed decisions -- to put it mildly.

I
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Old 06-30-2015, 08:58 AM
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Originally Posted by Jay1 View Post:
My 9 year old son had a grand mal seizure in school on December 11, 2014 and then another one happened at home on January 8, 2015. The second one was very bad and continued for 4-5 hours even in emergency room. I thought that my son was going to die.
Sounds like it's only beginning. When I first started experiencing seizures 30+ years ago, they didn't occur every week or every month. At first, they were every 4-6 months. When I had my first Tonic/Clonic seizure, I suffered 3rd degree burns and was in the hospital for two months. They did all kinds of tests.

Originally Posted by Jay1 View Post:
I came across a blog where people complained about various side effects of a commonly prescribed drug Keppra. I did more research and I read that this drug makes people suicidal and depression prone among all side effects. Someone mentioned something about Ketogenic diet.
The Ketogenic diet is used mostly for kids with severe epilepsy. Adults are known to use it also.

Originally Posted by Jay1 View Post:
I take my son to hospital every two months for Comprehensive blood profile and Ketones test. The last three visits have shown that more than 30-40 parameters in blood continue to be normal. He continues to be in ketosis. He is very active in sports and plays basketball, baseball, cricket and various other games.

I came across Charlie Foundation website and then happened to see movie "First Do no harm".
The Charlie Foundation is for kids with epilepsy and the Ketogenic diet. There are lots of stories of kids who the Ketogenic diet does work for. "Children are especially good candidates for the diet because of their developing brains." And it works better for these types of epilepsy syndromes:

http://www.charliefoundation.org/ket...ies-2/epilepsy
Certain epilepsy types may respond better to diet therapies
Epilepsy syndromes are specific syndromes that are associated with one or more seizure types. The ketogenic diet and the associated modified diets are well established in the treatment of epilepsy and in the following syndromes and conditions.

Glucose transporter type 1 deficiency syndrome
Pyruvate dehydrogenase deficiency
Myoclonic epilepsies:
Myoclonic-astatic epilepsy (Doose syndrome)
Severe myoclonic epilepsy of infancy (Dravet syndrome)
Tuberous sclerosis complex
Rett syndrome
Infantile spasm
Certain mitochondrial disorders:
Phosphofructokinase deficiency
Glycogenosis type V
Mitochondrial respiratory chain complex disorders
Landau-Kleffner syndrome
Subacute sclerosing panencephalitis


Originally Posted by Jay1 View Post:
Everyone' situation is unique and it may not work for them. However, they have every right to make an informed decision. Does it happen? Nope. Most of the decisions are taken in fear.
Who makes decisions in fear? I've done as much research about the different treatments for E over the years as you say you have. At one time, I was foolish enough to go off my meds! I've looked in to the Ketogenic diet, I've read books on different therapies for E, looked into the mind/body connection, went to a chiropractor and now that marijuana is legal here in Colorado, have considered trying it for my seizures. My decisions were not made in fear.
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Old 06-30-2015, 09:15 AM
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Cint,

Nobody could say it better.

As FedUp so passionately reminds us, it seems that the minute we humans claim to mean EVERYONE, at that very moment we are speaking an untruth about SOMEONE or many SOMEONEs.
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Old 06-30-2015, 09:16 AM
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Originally Posted by Bidwell View Post:
It really seems true that for most people in urgent situations, decisions are made in fear, and it is also true that many of us reading your posts are well aware that mainstream medicine in western countries does not offer the means of making informed decisions -- to put it mildly.
Well, what do you do in an urgent, emergency situation, then? Have you ever gone status and been rushed to the ER? In those URGENT, life/death situations, sometimes URGENT decisions are made.

After telling my neurologist several times that I would no longer take a certain medication because of the side effect(s), she got to the point of asking me if it is okay with me if we try something else or increase/decrease the dosage. We DO have the means of making informed decisions.
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Old 06-30-2015, 10:20 AM
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Oh, Cint, I have NEVER gone through anything like what you have gone through. And about emergency situations -- Oh, yes, of course -- I see what you mean.

You give me courage in your example regarding your exchange with the neurologist.The opportunity for making informed decision -- I don't know. You have taken the reins, thank goodness. It appears that I am very timid and when I am assertive my anxiety escalates and then oh boy.

About neurologists.

They intimidate me with their silences. For instance, we are looking at the medication list. The neurologist says, "What's this 25 mg increase when it says 50 mg?" And I say, "I have not got there yet." Then she does not say anything. [At this point I am intimidated. Did I do it right? My anxiety escalates. Clearly this is my problem.]

OR the guilt trip. For instance,he says, "You want to make a med change? Well, I could see you on my lunch hour but that is all the time I have available." Believe me, I don't want to take up the poor man's lunch break no matter what my distress. If it came to that, as far as I am concerned, it can wait forever. I'm no supplicant, after all.

I wish I could think of better examples. I know they exist.[This next part is me taking a stab at being funny but not by too much.] The problem is that when I take charge, they are scared of me. I am an imposing, HEALTHY looking woman at least 30 years older than these people and in most cases much taller. Before I get the idea myself, they have already thought that I could blow them out of the water. But I do get the idea and they are right.
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Old 06-30-2015, 10:51 AM
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Originally Posted by Cint View Post:
Well, what do you do in an urgent, emergency situation, then? Have you ever gone status and been rushed to the ER? In those URGENT, life/death situations, sometimes URGENT decisions are made.

After telling my neurologist several times that I would no longer take a certain medication because of the side effect(s), she got to the point of asking me if it is okay with me if we try something else or increase/decrease the dosage. We DO have the means of making informed decisions.
Cint,

There is only one difference. My son went in status epilepticus in both instances of seizures. However, my son was lucky not to even start on the daily routine of anti-epiletic drugs (anti-epileptic drugs). Fortunately, he started on natural treatment right away. He never had to face damage caused by anti-epileptic drugs. I was lucky to have google on my side and gain from the wisdom of people suffering from seizures and epilepsy.

Most of the people here or their parents did not have enough knowledge in the beginning stages and have been taking multiple anti-epileptic drugs for years. These anti-epileptic drugs have already caused lot of damage - (a) reduced blood brain barrier (b) increased oxidiative stress of brain tissues (c) reduce helpful bacteria in gut. These three damages caused by anti-epileptic drugs reduce immunity and cause more seizures and increase Sudden Unexplained Death in Epilepsy. It will take years to undo the damage caused by years of taking anti-epileptic drugs.

anti-epileptic drugs are like band-aids and never fix the underlying root cause of seizures and epilepsy.

Seizures do not happen overnight. It is our body's way of asking for nutrients once the body does not receive nutrients for a long time such as numerous months. Similar to what will happen if I kept on driving a car without coolant.

I used to travel extensively as an IT consultant and had numerous oral arguments with my spouse in previous 2-3 years. I felt that the kids are not getting nutritious food. It is easy to keep on eating pizza but there is zero nutrition value. Now, my another 5 year old son also knows what super foods are and what junk foods are. The two sons compete with each other - Who can eat more broccoli, avocado, mangoes, spinach leaves, grapes etc? Flax seeds, Hemp seeds.

Last edited by Jay1; 06-30-2015 at 11:02 AM.
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Old 06-30-2015, 11:47 AM
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Jay1;
What is your evidence that anti-epileptic drugs harm the blood brain barrier? "A number of knowledge gaps, conflicting points of view, and discordance between clinical and experimental data currently characterize this field of neuroscience" according to the article linked below. Many scientists and doctors feel a damaged BBB is responsible for seizures, and that some anti-epileptic drugs trigger repair of the BBB http://www.ncbi.nlm.nih.gov/pubmed/22905812

As for reduction in gut bacteria, if this is a concern eat yogurt, take a probiotic.

As for increased oxidative stress of the brain tissues, this is true of particularly the older anti-epileptic drugs http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520043/ and effect of anti-epileptic drugs on one seizure type, temporal lobe epilepsy, is discussed here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4306378/ But, it is important to recognize that seizures themselves cause increased oxidative stress on brain tissues http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3606551/. So if someone has severe (life-threatening) or very frequent seizures, it may not be too difficult to decide to take the anti-epileptic drug, esp. if it is a newer generation one, and to ask the neurologist about supplements to minimize the effects of oxidative stress on the brain and body.
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