Dietary changes and seizure control

How much coconut oil do you take every day?


  • Total voters
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Hi Jay1,

Do you use only coconut oil for your son or buy specific MCT oil or even XCT oil? I found that MCT oil is actually processed and might no be as good as coconut oil itself.... there is a link saying a doctor recommended using 4 tbsp of MCT il mixed with 3 tbsp of coconut oil to get the effect of Keto diet.... I am thinking if i shoul mixed .... but skepticle doing that. how do u feel on that?

Btw, how much mg you give ur 9 yr old for Magnesium?

Do you feel coconut oil will heal the seizure or it needs to take it forever in life? my feel is it will heal but need to be careful for unhealthy foods like fast foods, etx.
MCT oil is made by removing lauric acid from coconut oil.

I use only cold pressed virgin organic Coconut oil. It will be a big challenge to make a 5 year old to ingest it. Start it with small quantity say one teaspoon in morning and another teaspoon in night. Increase the amount once the body is used to it. Sudden large quantity can cause stomach ache and diarrohea (tested on myself). I have myself started taking two tablespoons of coconut oil twice a day. I feel myself more energetic and focused.

I would not mind giving coconut oil to my son even forever. It is healthy. My 9 year old son gets 6 tablespoon of coconut oil over the entire day - 2 morning, 2 afternoon and 2 in night. He had tummy ache for initial one week but now his body is used to it and does not get tummy ache now.

Magnesium - I have been giving 400 mg magnesium Oxide (Nature Made brand in Costco or Sams Club) for last 5 months.
 
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Oh my god. You had Status Epilepticus 4 times in your life. Yes, people can die and I also thought that my son is going to die.

Now, I am fairly optimistic that my son's brain is healing and seizures will be mild if they happen at all. My son never started on drugs and used diet as first line of defense.

Usually, doctors go for diet after multiple drugs fail to work. Drugs cause lot of collateral damage.

Several folks here on CWE have experienced Status 3-4 times in our lives. My two kids have witnessed it and had to call 911 because their father was a pilot. I will never trust a diet for seizures because for me, it would not work, totally. I suffered a severe burns from my first TC seizure, after a stupid doc said I was hypoglycemic. Seizures can cause lots of damage, even death. Read here for more about SUDEP:

http://www.coping-with-epilepsy.com/forums/f31/
 
Several folks here on CWE have experienced Status 3-4 times in our lives. My two kids have witnessed it and had to call 911 because their father was a pilot. I will never trust a diet for seizures because for me, it would not work, totally. I suffered a severe burns from my first TC seizure, after a stupid doc said I was hypoglycemic. Seizures can cause lots of damage, even death. Read here for more about SUDEP:


Hi Cint,

I noticed that you did not have any seizure till the age of 22 years old. Did your lifestyle change around 15-22 years of age? Higher stress levels due to college education, peer pressure, parental expectations pressure, living in college dorm and splurging on tasty but non-nutritious food.

One thing is for sure that you had excellent genes and excellent brain but some environmental factors caused seizures to start happening at 22 years of age. Then later on, drugs lowered your blood brain barrier defense and caused more seizures to happen.

Do you still get seizures? How long ago was your last seizure?

It may be worthwhile to try diet in combination with drugs.


Regards,
Jay
 
But they do not practice coconut (MCT) oil approach in USA.
Um, yes "they" do. Particularly those of us who live where coconuts are grown. The studies using lots of mayo, bacon and whipping cream are out of date.

My son never started on drugs and used diet as first line of defense.

Usually, doctors go for diet after multiple drugs fail to work. Drugs cause lot of collateral damage.

Have you read Dr. Freeman's book? Dr. Freeman pioneered the use of Ketogenic diet at John Hopkins.
And often doctors don't know anything about diet at all so they never go for it. My neurologist said, "I don't know why you would bother to eat a keto diet if the pills are working". Um, maybe because I don't like putting toxic chemicals in my body any more than absolutely necessary.

I found that MCT oil is actually processed and might no be as good as coconut oil itself...

Btw, how much mg you give ur 9 yr old for Magnesium?
The reason the MCT oil became popular is that it stays liquid even when mixed with cold things so it works better in smoothies and such particularly in cold climates. Easier to get a kid to eat it this way.

Personally, I like the real thing straight from the coconut. One of the big reasons for this is the magnesium content of coconut products (water, milk, cream, meat, flour) all have substantial magnesium content. (And potassium too).
I know nothing about pediatric dosing but adjust what ever you decide on based on the coconut component of the diet.
 
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The only state where coconuts are grown is in Hawaii. They don't grow anywhere else in the USA.

Jay, has your son been to a doctor. What do the doctor's say? Have they done a Video EEG or an MRI or CTscan? What blood tests have they done?

I am not a doctor, we are not allowed to diagnose or tell what will cure a person. We don't know.

For myself, I go to doctors. Once in a while I still go into status. Ativan stops my seizures right away.
 
Yes, Ruth, I realize that. I was joking. We have a post office here that does a service called "Post-a-Nut" where you get a free coconut to send to anyone you want by writing their address on the outside of the nut. You do pay the postage however.

Jay's earlier posts detailed what the doctors have and haven't done including a very complete blood workup.

I wish I had had access to the internet when my seizures started. I might never have spent decades becoming dependent on medications.
 
I am seizure free but I still take meds. I'm working on cutting them back gradually. I spent a lot of years on them (30) and the old body is habituated to them now. Sudden withdrawal could cause status epilepticus so I have to be careful.

Using ketosis, though I have been able to cut my meds back by half so far.
 
Hi Jay1...

how ur son take 2 tbsp in morning? I try to be creative by adding to my son cocoa powder drink .... but he wont drink it everyday .... and morning is rush hour for us to get to school n work ... need some ideal pls.
 
I noticed that you did not have any seizure till the age of 22 years old. Did your lifestyle change around 15-22 years of age?

Of course my lifestyle changed between ages 15-22. Things like menstruation, hormones, high school graduation. College is when my seizures started.


One thing is for sure that you had excellent genes and excellent brain but some environmental factors caused seizures to start happening at 22 years of age.

:ponder: :ponder: I didn't realize you're an expert on genetics research. How do you know it wasn't inherited?

Then later on, drugs lowered your blood brain barrier defense and caused more seizures to happen.

What drugs? My seizures happened, initially, during that time of month. So of course you nor your son will not understand where I am coming from.


Do you still get seizures? How long ago was your last seizure?
Yes, I occasionally get seizures. Last one was about 6 months ago.

It may be worthwhile to try diet in combination with drugs.

I do watch my diet. Like I've said, I have Type 1 Diabetes so I DO need to watch my carbs and check my glucose level numerous times a dy.
 
Hi AlohaBird,

I am glad you are seizure free and slowly getting rid of all meds. How long of coconut oil consumption you have taken to allowed reducing the meds? Do you take Magnesium supplement?
 
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 ....
 
Can you google Coconut Oil and type 1 diabetes? it appears to help for type 1 diabetes too. Just give coconut oil a try .

Where would I buy coconut oil? It is specialized.

AlohaBird, do you sell coconut oil, along with the coconut?
 
Ruth, I think you live in California and I am nearly positive that Whole Foods has coconut oil right along side olive oil and canola and the others! I keep mine in the refrigerator so that it is hardened. I shave it off when I want a tablespoon full. I use it on salads and also to put on berries. [I do not use sugar.]
 
Cold Pressed Unrefined organic virgin Coconut oil is available in Costco and Sams Club.

Costco - one pack of 2 jars of 42.3 fl oz each (total 84.6 fl oz) - $25

Sams Club - 1 jar of 56 fl oz - $15


Cost per fl oz in Whole Foods is almost 2 1/2 times of the price in Sams Club and Costco.

Coconut oil does not go bad at room temperature and does not need to be stored in refrigerator. Its shelf life is 2 years.

One jar lasts about 12-15 days in our home - 5 tablespoonful each for my son and myself everyday.
 
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Yes, coconut oil used to be an exotic ethnic specialty item but it is available in every US supermarket chain now. The word is getting out.
 
Hi Ruth,

I get mine from costco .... pls do get Cold pressed, unrefined extra virgin ccn oil. its fine if not extra virgin and i think virgin should be fine too. but must make sure its not refined. Ialso found publix also carry a brand called Kelapo .... i like their coconut oil but expensive .... you can also get it from whole foodw .... they have many brnads to choose from as well.
 
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 my god. You had Status Epilepticus 4 times in your life. Yes, people can die and I also thought that my son is going to die.
...

My wife has gone status so many times, I have lost count. Fortunately, since she weened from Dilatin and started a new regimen with Lamictal and ONFI, she has not gone status once. Neither my wife nor 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.
 
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 ....

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.
 
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