Dietary changes and seizure control

How much coconut oil do you take every day?


  • Total voters
    48

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I are, by any means, fans of meds and their side effects, but in her case, they far outweigh the alternative. Status epilepticus is no joke.

I am not a big fan of meds, either, but like you and your wife, Bernard, they far outweigh the alternative in my case, also. And like you say, STATUS is NO JOKE!!
 
Jay1;
What is your evidence that AEDs 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 AEDs trigger repair of the BBB

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 AEDs and effect of AEDs on one seizure type, TLE, is discussed here But, it is important to recognize that seizures themselves cause increased oxidative stress on brain tissues . So if someone has severe (life-threatening) or very frequent seizures, it may not be too difficult to decide to take the AED, 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.


Hi masterjen,

This forum does not allow me to post hyperlinks or upload pdf files. Whom do I request for granting access?

Anything that I have said is based on published scientific papers authored by various doctors and neurologists only. I have gone crazy in last six months and read close to one thousand full complete published scientific papers. (It is not based on blogs, forums, other's opinions or my own opinion)


Thanks for your help and have a great day.

Regards,
Jay
 
I will not be buying coconut oil of any kind.

The reason I asked is because AlohaBird lives in the only state in the USA that has naturally grown coconuts. I thought that she might be selling it on a website.

I guess I was wrong.

Like I have always said all along that coconuts have a lot of saturated fat and having Diabetes type 2, I cannot have coconuts at all.
Oh, Puuuuuhhhhleeeese! Right. I am secretly a sales rep for a giant coconut oil conglomerate, the evil BIG COCO. As if coconut oil needed my input on an epilepsy forum to be popular. If you kept up with modern research, you would know that it has been very popular for a long time available and cheap in any grocery store.

I think somebody owes me an apology. Just sayin'....

Yes, I can google "Coconut oil & Type 1 Diabetes". But I'll speak with my endocrinologist before I give it a try. He has much more valuable knowledge of diabetes and other hormonal issues. I could accidentally kill myself, too, or go into a diabetic seizure/comma, if my glucose level interferes with my epilepsy.

I will NOT just go online and "google" something and take someone's advice, just because this stranger says it works for them. Well, hallelujah for them. I need advice from a real doctor who has worked in the field for many years and treated patients. This online "google" medical advice isn't for me. I've already been thru hell and back.
When one "googles" something one does not necessarily have to take the advice one finds.

I really think though that both Jay and HCW are filled with the spirit of new knowledge. (And please don't forget what Bidwell pointed out about dealing with a language barrier here.) I think you are being really quick to take offense when someone else, who couldn't possibly know your whole history, is just being enthusiastic and wanting to share the wonderful new things they have learned.

I hope we can try to be welcoming to new members around here.
They both had it pointed out to them that they were being rude and have apologized and backed off of saying that what works for them will work for everyone forever.
Now you are the one being rude by saying that their information is not real or valid just because it came from a different source.

What is wrong with multiple sources of information?
 
Two years ago, I happened to travel to Honolulu for three months on an IT work assignment. I was hesitant to travel there but it turned out to be a pleasant surprise.


You feel the difference as soon as you step outside of plane in Honolulu airport ... very different from any other airport in continental USA. A fresh breeze of air greeted my face and perhaps added few days to my entire life span.


People in Hawaii are the nicest (from heart and not superficial) that I have come across in the entire world including mainland United States. Perhaps it is their culture or tourism industry or climate. Folks in Hawaii are 10 out of 10. I consider myself 1 out of 10. My three month sojourn left me motivated that I will try to improve my rating from 1 and get higher on the scale.


Living in Hawaii can very easily add 10 years to your life. The Hawaiian breeze takes all the pollution away from land. Senior citizens in Honolulu can get a 2 year unlimited bus pass for $10 one time fee. Almost everyone (man or woman) will stand and leave their bus seats for children and elderly. The people in Hawaii will wave hands and stop to help you without rushing. It seems as if one is completely in different world. I traveled in 55 number bus numerous times and it around Honolulu in a circle. Any kind of crime is almost non-existent in Hawaii.


Who can get seizures in a place where people are so helpful and loving? It is the people of Hawaii who have made it paradise.
 
Here's the thing no one wants to talk about with these diets, especially regarding kids. There is more to food than just biochemistry we are social beings and there is also psychology and our sensory system to take in to account. Let's say in a perfect world this diet really works reliably, and you can control seizures just with diet. It didn't work for us, and I have years of well researched experience doing these types of diets along with the guidance of a natural health doctor. But let's set that aside and say it does work. So this perfect diet that your child must stay on all the time with never the slightest infraction. He will never be able to eat at a birthday party or sleep over, never have a meal in a restaurant or participate in a holiday gathering that serves food, never go to an amusement park or a vacation unless extremely difficult arrangements can be made to transport food, never be able to go to summer camp or live in dorms in college. Probably never take communion or participate in other religious ceremony involving food. The list goes on. Now if you are an adult and this is what you choose for yourself - more power to you. If your child has such diminished quality of life from uncontrollable seizures that they aren't experiencing that anyway, then Godspeed. But for the average child with Epilepsy who can respond well to medication you are putting a great social and psychological burden of isolation on them regarding food. One of the first ways that we punish someone in an institutional setting is to make them eat alone. It's isolating and demoralizing and people seek to avoid it. Just think about it before you jump on the bandwagon with these diets. Again, I am saying this as a parent who had their children on special diets for three years. It was unfair to my children and I regret it. I should have tried conventional treatments first.


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When one "googles" something one does not necessarily have to take the advice one finds.

I really think though that both Jay and HCW are filled with the spirit of new knowledge. (And please don't forget what Bidwell pointed out about dealing with a language barrier here.) I think you are being really quick to take offense when someone else, who couldn't possibly know your whole history, is just being enthusiastic and wanting to share the wonderful new things they have learned.

One could know my epilepsy history by taking a look at my profile if they wish. I have stated numerous times on this thread that I have diabetes and don't think this stuff works for me. I didn't take offense. I was just stating a fact after this suggestion was made:

Hi Cint,
Can you google Coconut Oil and type 1 diabetes? it appears to help for type 1 diabetes too. Just give coconut oil a try ... you might kill 2 birds with 1 stone ....

I hope we can try to be welcoming to new members around here.
They both had it pointed out to them that they were being rude and have apologized and backed off of saying that what works for them will work for everyone forever.
And I wasn't one who pointed it out that they were being rude. I think you were one who did.

Now you are the one being rude by saying that their information is not real or valid just because it came from a different source.
I did not say their info is not real or invalid. I said it isn't good advice for me.
Furthermore, I would rather speak to a dr. who is experienced with my case. I have several different chronic issues, so I do not need advice from newbies.

What is wrong with multiple sources of information?
Nothing. That is why I seek numerous doctors and read multiple articles/books on my issues.
 
You feel the difference as soon as you step outside of plane in Honolulu airport ... very different from any other airport in continental USA. A fresh breeze of air greeted my face and perhaps added few days to my entire life span.

People in Hawaii are the nicest (from heart and not superficial) that I have come across in the entire world including mainland United States.

Living in Hawaii can very easily add 10 years to your life. The Hawaiian breeze takes all the pollution away from land. Senior citizens in Honolulu can get a 2 year unlimited bus pass for $10 one time fee. Almost everyone (man or woman) will stand and leave their bus seats for children and elderly. The people in Hawaii will wave hands and stop to help you without rushing. It seems as if one is completely in different world. Any kind of crime is almost non-existent in Hawaii.

Who can get seizures in a place where people are so helpful and loving? It is the people of Hawaii who have made it paradise.
This is why I moved here. And yes, I do believe it helps with my seizures. I have visited the mainland twice since moving here and both times I have been counting the minutes until I could get back home.
http://www.coping-with-epilepsy.com/forums/f23/if-you-have-have-e-somewhere-24783/
 
Here's the thing no one wants to talk about with these diets, especially regarding kids. There is more to food than just biochemistry we are social beings and there is also psychology and our sensory system to take in to account. Let's say in a perfect world this diet really works reliably, and you can control seizures just with diet. It didn't work for us, and I have years of well researched experience doing these types of diets along with the guidance of a natural health doctor. But let's set that aside and say it does work. So this perfect diet that your child must stay on all the time with never the slightest infraction. He will never be able to eat at a birthday party or sleep over, never have a meal in a restaurant or participate in a holiday gathering that serves food, never go to an amusement park or a vacation unless extremely difficult arrangements can be made to transport food, never be able to go to summer camp or live in dorms in college. Probably never take communion or participate in other religious ceremony involving food. The list goes on. Now if you are an adult and this is what you choose for yourself - more power to you. If your child has such diminished quality of life from uncontrollable seizures that they aren't experiencing that anyway, then Godspeed. But for the average child with Epilepsy who can respond well to medication you are putting a great social and psychological burden of isolation on them regarding food. One of the first ways that we punish someone in an institutional setting is to make them eat alone. It's isolating and demoralizing and people seek to avoid it. Just think about it before you jump on the bandwagon with these diets. Again, I am saying this as a parent who had their children on special diets for three years. It was unfair to my children and I regret it. I should have tried conventional treatments first.
You raise a valid point and the social factor is the reason that most children (and adults) who decide not to continue with the diet cite as the biggest obstacle.
As far as the fact that it didn't work in your case goes, it doesn't work in every case. Nor does medication. Saying that you "should have" done x instead of y is 20/20 hindsight.

The thing is, there are alternatives to the full on keto routine of measuring grams of everything. One that I would propose as a sensible middle ground would be a low carb/high fat paleo style diet. It cuts out the worst offenders like the grains, sugar, chemical junk like MSG and aspartame.

Cooking for yourself (or a child) you control the food that is in your home which should be most of the food consumed (We all know that living on take-out isn't healthy). If the home food is clean then the once in a blue moon event like a birthday party doesn't have to be a big deal.

The other thing though is that people are becoming much more aware of these dietary issues. I have been to several gatherings in the past few years where there were many gluten free alternatives, dairy free, nut free, etc. Waiters no longer think you are weird or rude if you ask about gluten, say in the sauce. So I really think the social stigmatization issue is fading. They even have gluten free communion wafers in a lot of churches these days.

I choose not to continue with measuring and weighing everything down to the gram. It's not worth the hassle for me. I know when I'm in ketosis and how to stay there.
 
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Here is a success story from KarenB ( user on this forum and mother of a child suffering from seizures) posted on 03/26/2015. You can search her post.


---------------------------------
Haven't been checking in for awhile, but just wanted to give an update that Jonathan (now age 11) has been seizure free for over 2 years now.

He had that horrible time in 2012, where he was having around 7 tonic-clonic and tonic seizures a day, and I didn't think we'd ever get out of the valley of the shadow.

His seizures are now completely controlled with the Ketogenic Diet and a very small dose (50 mg/day, which is considered non-therapeutic) of Zonegran. He was weaned off the Diazepam and Keppra 2 years ago.

We hope to be completely med free by the end of this year.
--------------------------------
 
Seizures can absolutely be controlled through diet -- in fact, the Ketogenic Diet for Seizures has a better success rate than any seizure drug currently on the market. And the side effects are far less than any seizure drug currently on the market. This is not to say that everyone will be completely seizure free with dietary changes, but then again, not everyone is completely seizure free even with multiple seizure meds. Not only does the Keto diet eliminate or significantly reduce seizures for thousands of people, it also is neuroprotective and possibly neuroregenerating -- good for brain cells.

Our son has been on the Ketogenic Diet for Seizures for several years, and has been seizure free for 2 1/2 years, after having between 3 to 15 tonic-clonic and tonic seizures a day. He is now almost med-free. This diet takes an enormous amount of commitment and planning and work, but it is worth it. For more information on the diet, go to Charlie Foundation http://www.charliefoundation.org/ and/or Matthew's Friends http://www.matthewsfriends.org/ This links will provide info on the efficacy of the diet, based on studies by Johns Hopkins, Mayo, etc, different types of the diet, and lots of helpful info like recipes, where to find neurologists who work with the diet, etc.

However, the strict Keto diet may not be for everyone. The dietitian at the Charlie Foundation said that many people have become seizure free simply by eliminating gluten (wheat, etc.) from their diet and sugar. Some people in this forum have found relief from low-glycemic diets.

Jay 1 mentioned coconut oil. This is commonly used in the Keto diet -- the medium-chain tryglicerides help with maintaining ketosis. We use MCT oil with every meal, which is a derivative of coconut oil. MCT oil is also beneficial for those with intestinal issues (common to those with epilepsy) as it is absorbed differently and more efficiently.
We also use tumeric (actually curry) as it also has healing properties for the gut. (strong correlation between gut issues and seizures for many)
Avocado is a perfect food for the Keto diet as it has a 4:1 ratio of fat to carbs. Unfortunately, Jon developed an allergy to avocado, so we aren't able to use it now.
Jon doesn't drink milk at all -- too high in sugar. He does consume cheese and gets a calcium supplement.
Jon gets a magnesium supplement. He was getting carnitene, but his levels have been good recently, so we only give if labs show a low level. He also gets a fish oil supplement which was very helpful with seizures and is also neuro-protective. He also takes Nutrivene supplement -- which has mega-vitamins and anti-oxidants, and also good stuff like selenium, etc.

*****
Also, it HAS been proven that diet can control seizures. I can provide dozens of links to studies by major hospitals. Big Pharma would rather you not know this -- after all, no one gets rich off of the Ketogenic diet as opposed to pills that represent huge profit to the drug industry.
 
I agree with what you say about the socialization of food. However, there are lots of way to adapt so that children on the Ketogenic diet don't feel deprived. Communion crackers are actually on the Ketocalculator, and so small that someone could take communion as long as they immediately eat a small fat source. Or, special communion crackers can be made. Same with birthday parties, etc. All sorts of cakes are allowed on the diet, using almond flour, coconut flour, etc. Frosting can easily be made, since butter and cream are allowed -- just use Stevia to sweeten instead of sugar. Ice cream is completely allowed -- just sugar free. Whenever Jon has a party, I just prepare his special snack and he's good to go. We still go out to eat, and Jon has traveled around the world -- we just take his food with us. He eats with his friends at school, no problem.

Whenever people see what Jon gets to eat, they're jealous. He eats well, I promise you. Lots and lots of fresh veggies and fruit, olives, cheese, etc. His teacher says she wants to eat his lunch lots of days. I made cheese crackers for snacks, he can have smoothies, ice cream, cookies, cake, etc. Just have to follow a different recipe, and yes, that's work for me, but I just joy in the fact that he is SEIZURE FREE without all the horrible side-effects of medications (cognitive, liver, kidneys, etc.) that weren't very effective anyway.
 
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Karen, Thank you so much for your posts. For a long time I have been feeling my way along in terms of using food to address my seizure diagnosis. Your posts, and Jay's, too, confirm my choices and lead me to consider further possibilities [such as avacados].

I am curious about who you think reads your posts. It appears you believe people on this forum disagree ABSOLUTELY with your point of view. I don't think that is true. In fact think most people using this forum would agree that food can control seizures. I also think most of us know plenty about the extremely destructive potential of medication and the destructive potential of the way medicine is practiced in the 21st century, but each and every one of us is dealing with our own limited selves and our own limited resources and our own limited time on earth. This means that sometimes, not so infrequently, either, the choices we make to use medication are WONDERFUL, MIRACULOUS choices for which we are DEEPLY GRATEFUL. After all, the same medical science that brought us leaches and blood letting and Snake Pit has also brought us ideas about the brain/gut connection.

It is VERY off putting to be told that we are SO ignorant. I am leaving out all the corruption of medicine by big business for another time.
 
Karen, Thank you so much for your posts. For a long time I have been feeling my way along in terms of using food to address my seizure diagnosis. Your posts, and Jay's, too, confirm my choices and lead me to consider further possibilities [such as avacados].

I am curious about who you think reads your posts. It appears you believe people on this forum disagree ABSOLUTELY with your point of view. I don't think that is true. In fact think most people using this forum would agree that food can control seizures. I also think most of us know plenty about the extremely destructive potential of medication and the destructive potential of the way medicine is practiced in the 21st century, but each and every one of us is dealing with our own limited selves and our own limited resources and our own limited time on earth. This means that sometimes, not so infrequently, either, the choices we make to use medication are WONDERFUL, MIRACULOUS choices for which we are DEEPLY GRATEFUL. After all, the same medical science that brought us leaches and blood letting and Snake Pit has also brought us ideas about the brain/gut connection.

It is VERY off putting to be told that we are SO ignorant. I am leaving out all the corruption of medicine by big business for another time.


Hi Bidwell,

These posts are not meant to disrespect or deny the wealth of information or knowledge of longtime folks on this forum. It is very important for newbie users like me to learn from experience of all users trying different techniques for controlling seizures.


These posts help in three ways. Look at my son's case.


(1) On Jan 8. 2015, I knew nothing about diet, seizures or epilepsy. Suddenly, I came across some forum where people mentioned about ketogenic food and side effects of drugs. I continued reading on that forum for next 10-15 hours.

I am not sure which forum or website it was. Perhaps it was this website from where I got my initial information. I declined Keppra with extreme fear and hesitation. More than 10 different neurologists in hospital had told me to start my son on Keppra immediately and scared me with what can happen. I dreaded any phone calls from school. The school left me message one time starting " Its not a seizure. Its not a seizure" and then proceed with the real message. I started my son on diet on my own immediately - high fats, low carbs and moderate protein. The hospital gave the appointment with Ketogenic team after two months and we could not wait. Slowly and slowly, I learned about various things that people have doing - Magnesium, Omega-3 etc. Later on, I validated the information on posts with published medical papers.

I would have been forced to start my son on Keppra due to fear and lack of knowledge if such posts did not exist.


(2) Posts by KarenB has validated my decision that I am on right track. It helps to have some reconfirmation even though it is by non-medical professionals.


(3) HopeCoconutWorks was also struggling for information and saw my post. Then she went and did her own research and reached her conclusion.



My son and HopeCoconutWorks's son can also become success stories after 2-3 years if they did not suffer from any more seizures.


I am still struggling for more information and this forum has been very helpful in learning new things. The other day, I learned about Moringa leaves but do not know where to get them.


Thanks for everyone's help and have a great day.


Regards,
Jay
 
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Seizures can absolutely be controlled through diet -- in fact, the Ketogenic Diet for Seizures has a better success rate than any seizure drug currently on the market. And the side effects are far less than any seizure drug currently on the market. This is not to say that everyone will be completely seizure free with dietary changes, but then again, not everyone is completely seizure free even with multiple seizure meds. Not only does the Keto diet eliminate or significantly reduce seizures for thousands of people, it also is neuroprotective and possibly neuroregenerating -- good for brain cells.

Nowadays, more docs and hospitals are looking into the Keto Diet for seizures.

http://www.ncbi.nlm.nih.gov/pubmed
Ketogenicdiet: an early option for epilepsy treatment, instead of a last choice only.
Wang HS1, Lin KL.
Author,
Ketogenic diet (KD) was usually tried as a last resort in the treatment of intractable epilepsy after failure of many antiepileptics and even epilepsy surgery. Glucose transporter-1 deficiency and pyruvate dehydrogenase deficiency must be treated with KD as the first choice because of inborn errors of glucose metabolism. Infantile spasms, tuberous sclerosis complex, Rett syndrome, Doose syndrome, Dravet syndrome, etc., appear to respond to KD, and it has been suggested by the international consensus statement to use KD early. We believe that all patients with epilepsy, except those with contraindicated situations such as pyruvate carboxylase deficiency, porphyria, β-oxidation defects, primary carnitine deficiency, etc., may try KD before trying other regimens.


Also, it HAS been proven that diet can control seizures. I can provide dozens of links to studies by major hospitals. Big Pharma would rather you not know this -- after all, no one gets rich off of the Ketogenic diet as opposed to pills that represent huge profit to the drug industry.

True, but like you said, not all can have seizures controlled by diet just as not all can have seizures controlled by meds. But I do agree that the pharmacies are making HUGE profits from the meds, only because we, the patients, allow them to do so. More info about the Keto diet and Epilepsy:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898565/
The ketogenic diet initially was developed in the 1920s in response to the observation that fasting had antiseizure properties . During fasting, the body metabolizes fat stores via lipolysis and then the fatty acids undergo beta-oxidation into acetoacetate, β-hydroxybutyrate, and acetone—ketone bodies the cell can then use as precursors to generate adenosine triphosphate (ATP). The ketogenic diet, which is very high in fat and low in carbohydrates, is thought to simulate the metabolic effects of starvation by forcing the body to use primarily fat as a fuel source. The ketogenic diet fell out of favor with the development of new anticonvulsant agents, starting with phenytoin in 1938, but it has experienced a resurgence in use over the past 20 years, particularly in the treatment of refractory epilepsy.
 
Jay1,
The Moringa tree is a wonderful thing. It's like a multi vitamin, multi mineral, multi amino acid supplement all in one plant. I take some every day. I have the capsules and add the powdered leaf to smoothies.

http://www.molokaimoringa.com

This ^^^ is where I get mine (Full economic disclosure. I have no financial interest in this company but a friend of mine does. But then on an island this size, just about everybody is a friend.)


There are also several companies selling Moringa on Amazon but this is the only one I know of that is grown in the USA. The others are from Africa. That's not a bad thing, I just like to eat locally when possible.

Fresh Moringa leaves and the pods are also delicious. The best place to find them is in an Asian run grocery store as these are staple produce in many Asian cuisines. I get mine from a Philippina lady at the local Farmer's Market.
 
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Just a quick Q.

Is it possible to replace fresh turmeric with fresh ginger? They are from the same plant family. It is nearly impossible to find fresh turmeric here where I live.

Could I replace cow milk with almond milk? The aim seems to be to remove the cow milk. I dont think I ever seen goatmilk in any store here?
 
They are not really the same thing although both are good for you.
Turmeric is neuroprotective while ginger is used more for stomach complaints.

If you can't find fresh turmeric, the powdered kind works just fine. Either you can make a lot of curries (which I do) or if you don't like the taste you can get it in capsules.
I keep the capsules for days when I need a change from Indian seasonings.

I make a tea with lemon grass and fresh ginger that is definitely "good for what ails ya."
And my healer makes a tea out of the lemon grass and turmeric. I think that tastes a little funny but interesting.


Yes, the problem with milk is with COW milk specifically the casein protein in it. Goat milk is much easier on the human digestive system being much closer to human breast milk as far as both the fat and protein structure but it can be hard to find depending on where you live.
Any of the nut milks (almond, hazelnut) are fine as long as you make sure they don't have additives. Read the fine print. And coconut milk is a wonderful thing. Whatever you do, stay away from soy milk and all other soy products.
 
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I just found goat gouda cheese and had some for breakfast - SOOOO good!
 
@alohabird
Aha, I already make a gingertea, and for some reason thought that made me feel better.
I'll try the dried turmeric. Didn't think that would work. Hmm, it is said that I should add some pepper with the turmeric because some absortion properties? I'll try that too.
 
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