What I feed my son every day to keep his seizures away

[Jay1]

This is working for my son. Every case is different and it may not work in your case. Please consult your doctor.


My son is 9 1/2 years old, 61 lbs, 54 inches tall. He has been seizure free for last 6 1/2 months and does not take any medicines. He is in 50 th percentile for height and weight. We are vegetarians and so meat is not included in our diet.

He had two prolonged (4-5 hours long) status epilepticus 6 1/2 months ago. Both status happened within 20 days of each other and he was intubated and remained in hospital for 3-4 days both times.

I accept that I have become a dictator. I do not listen to my son whether he likes a certain food or not. Previously, he used to whine and throw tantrums. He used to say that he does not like fruits and vegetables. Now, he may take one hour but he will eat them quietly although I need to watch and prod him to eat. I am very firm and will not tolerate any resistance in eating fruits and vegetables. It takes 10 times to start liking something.



Breakfast

One glass of water
One tablespoon of coconut oil
Two large peeled avocados


Between Lunch and Breakfast
7-8 large broccoli florets
One tablespoon of coconut oil


Lunch
One big peeled mango or two plums or apple or any other fruit
One tablespoon of coconut oil
Two slices of goat milk cheese
One cup cooked lentils or beans
One cup of Mixed vegetable salad or another raw vegetable
One glass of water


Between Lunch and Dinner
One or two tablespoons of coconut oil
Cashew Nuts or almonds or any other type of nuts
One glass of water
One glass of mixed juice (made at home)


Dinner
One or two tablespoons of coconut oil, flax oil and hemp oil

One cup Goat Yoghurt sprinkled with 2-3 spoons of flax seeds
Some other fruit
Spinach or some other green vegetable
Turmeric
Some variation of Asparagus, Onions. ginger and garlic


He gets vitamins, Magnesium, B Complex, Carnitine, Bilberry, CoQ10 and Alpha Lipoic Acid before sleeping. These vitamins are free from any artificial colors (such as Red # 2 or Yellow #4).


Few things remain same every day (sorry I am a dictator)

(1) At least 5 tablespoons of Coconut Oil
(2) At least 2 avocados
(3) Some goat cheese or goat milk
(4) Servings of fruit and vegetables at every meal

Other fruits - My son can select the fruit or vegetable from list of super foods that he wants to eat. But he has to eat fruit and vegetable servings at every meal.


My son is in ketosis and his autistic tendencies are almost getting to disappear. He still finds it difficult to differentiate between two similar situations - hurting someone intentionally versus hurting someone by mistake.

He has also improved significantly in academics. My son's Math percentile (nationwide US peers) increased from 34% in Dec 2014 to 90% in June 2015. His vocabulary is also increasing very rapidly.

 

[AlohaBird]

Hmm. I didn't know you were vegetarians. That adds an extra layer of complexity to structuring a keto diet.

I don't mean to insult your beliefs if your diet is due to religious practices but, biochemically it is not the ideal human diet. Vegetarians regularly have very low vitamin B12 rates.

This is a CWE thread about a lady discovering that, for her, supplemental B12 completely stopped her seizures.

http://www.coping-with-epilepsy.com/forums/f23/amazing-difference-25303

Also because you are relying on cheese very heavily for the protein portion, you will have to be very wary of the problem they saw so often at Johns Hopkins. Kidney stones.

Are eggs ever included?

 

[Jay1]

Hmm. I didn't know you were vegetarians. That adds an extra layer of complexity to structuring a keto diet.

I don't mean to insult your beliefs if your diet is due to religious practices but, biochemically it is not the ideal human diet.

I am not a religious person although I do believe in god. I did eat meat for about one year (more than 10 years ago) in 45 years of my life. Why do you say that it can not be a complete diet?

I am open for my son to eat meat if there are some benefits. They inject nitrates in meat which is another issue. He wants to eat fish and I will be fine if it was Hawaii or Alaska. Fish in other places have lot of mercury.

Vegetarians regularly have very low vitamin B12 rates.

This is a CWE thread about a lady discovering that, for her, supplemental B12 completely stopped her seizures.

http://www.coping-with-epilepsy.com/forums/f23/amazing-difference-25303

B12 can be a big factor. As of now, my son's B12 levels are much higher than normal range (due to fruits and B Complex supplement) and I have removed supplements for few days to bring the levels down. Going forward, we will simply rely on fruits only for his entire supply of vitamins.

Also because you are relying on cheese very heavily for the protein portion, you will have to be very wary of the problem they saw so often at Johns Hopkins. Kidney stones.

He gets his protein from lentils, beans and cheese. Cheese is only about 5-10% of his diet. Additionally, the cheese is from goat and is processed by body differently compared to cow cheese. Goat cheese has high MCT while cow cheese has high LCT.

I think that chances of stones are less with goat cheese compared with cow. (Need to do more research on this issue)

Possibility of Kidney stones is something that needs to be continually watched. Making him drink lot of water

Are eggs ever included?

He used to eat eggs and wheat. I watched the video below and decided to take both eggs and wheat out. The premise is that the molecules in egg and wheat are very complex and the body finds it difficult to break them down.

Understanding the "10 Bad Foods" - with Dr. Glidden
https://www.youtube.com/watch?v=w2qCCTyTyPA

Foods That Heal & Foods That Kill
https://www.youtube.com/watch?v=szIUeYWRFN8

Dr. Perlmutter is okay with people eating eggs.

My knowledge about eggs is very rudimentary. Eggs have high cholestrol and it played a role in removing eggs from the diet. Kids on Ketogenic diet start having significantly high cholestrol levels. My son's cholestrol level are slightly elevated above the normal range.

 

[valeriedl]

I had been a vegetarian for at least 5 years before I had my first seizure at the age of 27. It was a status epilepticus seizure and I had to be put into a coma for at least 3 weeks before they were able to find meds that were able to make the seizures from stopping so frequently before they were able to bring me out of the coma.

I was still a vegetarian for about 4 more years after I had been diagnosed with epilepsy. When I was released from the hospital I'd been having nearly 20 seizures a month. Hardly any of them were grand mals, I very rarely have them in general, even now. The neuro worked with my meds and got the number of seizures to lessen, not by much, but they were still very bad. They lasted a long time and I would go to the ER for some of them. I started eating meat again about 4 years later and was still having about that many seizures a month.

My neuro had worked with my meds through the years but really couldn't find anything that helped much. He suggested getting a VNS. I got one and it reduced my seizures to about 7 a month and they aren't nearly as bad as they were. I'm still taking meds along with it.

What you eat might be helpful but I don't think you're diet alone is going to stop you from having seizures. I would defiantly talk to your dr about what you eat and vitamins that you take. I had been taking some vitamins that were actually causing me to have seizures.

I accept that I have become a dictator. I do not listen to my son whether he likes a certain food or not. Previously, he used to whine and throw tantrums. He used to say that he does not like fruits and vegetables. Now, he may take one hour but he will eat them quietly although I need to watch and prod him to eat. I am very firm and will not tolerate any resistance in eating fruits and vegetables. It takes 10 times to start liking something.

I can't believe you do this to you're son! Standing there for an hour forcing him to eat something. I think that's horrible. The only reason he's probably eating the things now is so you will leave him alone and let him up from the table! When I was that age my dad always made me try a spoonful of everything that was on the table. I never threw a fit because I knew if I didn't like it after that I never had to eat it again.

 

[Ruth]

I can't believe you do this to you're son! Standing there for an hour forcing him to eat something. I think that's horrible. The only reason he's probably eating the things now is so you will leave him alone and let him up from the table! When I was that age my dad always made me try a spoonful of everything that was on the table. I never threw a fit because I knew if I didn't like it after that I never had to eat it again.

My twins wouldn't eat anything. They threw food all over the place. Then I had appendix to come out. I was pregnant with my daughter.

My Mother came to take care of the twins while I was in the hospital. She forced them to eat. By the time I came home, my sons were eating. My sons were losing weight. My Mother saw the problem and she took care of it.

It is not horrible to make your children eat. Most children eat, my other 3 ate without any problem.It would have been horrible if they continued to lose weight.

I am a vegetarian except I do eat Salmon 3 times a week. I take Vitamin B Complex. My doctor told me to. My bad cholesterol is high. I also take Vitamin B for Keppra.

Each of us is different in what we can or cannot eat. If coconut oil is good for someone, then let them eat it. I cannot eat it. We had a thread a few years ago about it. There are a lot of diets here at CWE.

I like to read what others eat and what they find is good for them. I learn about diet that way. onder:

 

[CathyAnn31]

I can't believe you do this to you're son! Standing there for an hour forcing him to eat something. I think that's horrible. The only reason he's probably eating the things now is so you will leave him alone and let him up from the table! When I was that age my dad always made me try a spoonful of everything that was on the table. I never threw a fit because I knew if I didn't like it after that I never had to eat it again.

^ this. I think about the psychological aspect of this - if he feels shame it can cause lifelong damage, things like eating disorders, low self esteem, depression or even PTSD. Hopefully it won't be an issue with your son.

But hey, if it ain't broke then don't fix it I guess. Good luck to y'all.

 

[Ruth]

Should you think about the psychological part at all.

We are not Doctors, so we cannot diagnose or say what pills a person should have.

What makes you think he is going to have lifelong damage. You are diagnosing Jay1's son. None of us should diagnosis anyone.

Ask Bernard. You can PM or VM him and Stacy.

 

[CathyAnn31]

You should always think about the psychological aspect of things Ruth, at least I do. My cousin is morbidly obese due in part to my over-controlling aunt forcing her to clean her plate at every single meal. My best fiend growing up was bulimic, and would purge her meals, even after she moved out and went to college. Being forced to eat more or things you don't like can, and do cause lifelong problems. Does it happen all the time? No, but it does happen.

I never diagnosed anyone.

 

[Jay1]

^ this. I think about the psychological aspect of this - if he feels shame it can cause lifelong damage, things like eating disorders, low self esteem, depression or even PTSD. Hopefully it won't be an issue with your son.

But hey, if it ain't broke then don't fix it I guess. Good luck to y'all.

There is nothing shameful in eating fruits and vegetables. When did eating wide variety of fruits and vegetables become a disorder? Did you know that all fruits and vegetables contain phytochemicals? No wonder folks are suffering from seizures and numerous diseases because they think it is shameful to eat fruits and vegetables. Would you like to see link to US govt website where they recommend 4-5 servings of fruits and vegetables everyday?

Sorry to say, I am the parent and not the friend of my son. No, I do not stand there and watch him eat. He has the freedom to move from the table but he still needs to finish his fruits and vegetables. Now, he eats every kind of fruit of vegetable and fruits apart from bananas.

He loves to play basketball and I had to do it only once. The consequence was that I did not take him to park that day. ( I always take him out to park for at least two hours every day). Now, he knows what will happen if he does not eat his fruits and vegetables.

If your son came and told you that he does not want to study in school, what will be your reaction? Will you let him drop out from school?

Coconut oil is another issue. I was forced to make a choice between AEDs and coconut oil. Are n't you folks taking AEDs for numerous years? If AEDs are so great, then how come you folks are still having seizures and numerous cognitive issues?

 

[CathyAnn31]

Here's a link. https://www.psychologytoday.com/blog/sapient-nature/201403/the-nurturers-curse

You watch and prod hm to eat. You don't care if it's something he doesn't like. You're very firm and won't tolerate any resistance. You said all of those things. Being over-controlling can cause issues as he grows up. Can. I'm not saying it does every time. How did your parents handle meal time?

Jay, again, I'm very glad that what you're doing with your son is working to help his seizures and I hope it forever keeps them away. Just wanted to give you another perspective that you might not have thought about.

 

[masterjen]

Two things, Jay:
1. I see it as very sad that you do not consider yourself your son's friend. A friend means at times being on an equal level with your son; it is not constantly necessary to be a parent-figure.
2. Who is to say your son has not outgrown his seizures, that they were triggered by an illness or noxious substance you don't even know about that he has not encountered since, or that he is one of those individuals that has seizures every half year or every year? Some of us still have seizures because of brain tumors, hippocampal sclerosis, white matter abnormalities, genetic abnormalities, etc. And no, Jay, no amount of coconut oil is going to correct those issues.

 

[valeriedl]

My parents were always my friends. If I was having problems with something I knew I could go to them to talk about it and they would help. If they weren't my friend then I wouldn't go near them when I needed to cry about something.

I don't know of anyone, child or adult, who thinks it's shameful to eat your fruits and vegetables. Any time I went to a friends house, or they came to mine, for dinner we would always eat the fruits and vegetables. Even at school with our lunches, wither we packed them or bought them there, everyone ate their fruits and vegetables. If someone's parent had packed them a fruit that we all liked we were jealous.

I had to eat bananas like crazy when I was little because I needed a very high amount of potassium for a medical condition I had. I can't stand them now and won't go near them. The taste and smell make me sick. Who knows when your son gets older he may not go near any fruits or vegetables because he was forced to eat them like he was as child.

And I think eating foods and dropping out of school are on two completely different levels. Plus since my parents were my friends I knew if I was having trouble with something in school I knew I could go to them about it.

2. Who is to say your son has not outgrown his seizures, that they were triggered by an illness or noxious substance you don't even know about that he has not encountered since, or that he is one of those individuals that has seizures every half year or every year? Some of us still have seizures because of brain tumors, hippocampal sclerosis, white matter abnormalities, genetic abnormalities, etc. And no, Jay, no amount of coconut oil is going to correct those issues.

I completely agree with this! There are many people who can go months to years without having a seizure, no matter what the eat - including coconut oil, it's not a magical cure - then all of a sudden BAM out of no where a seizure happens. I very much hope not but this could end up happening to your son.

 

[Jay1]

Two things, Jay:
1. I see it as very sad that you do not consider yourself your son's friend. A friend means at times being on an equal level with your son; it is not constantly necessary to be a parent-figure.

You are right. I meant that a parent can not be a friend all times. There are some issues where becoming a friend does not help.

2. Who is to say your son has not outgrown his seizures, that they were triggered by an illness or noxious substance you don't even know about that he has not encountered since, or that he is one of those individuals that has seizures every half year or every year? Some of us still have seizures because of brain tumors, hippocampal sclerosis, white matter abnormalities, genetic abnormalities, etc. And no, Jay, no amount of coconut oil is going to correct those issues.

My son can still get seizures and I can not predict the future. I am not letting my guard down and this is why I can not be a friend in nutrition matters. He can pick his fruit or vegetable out of 15-20 choices and eat that one.

Yes, you are right. It is not coconut oil alone but the complete package of nutrition which helps.

 

[Jay1]

Here's a link. https://www.psychologytoday.com/blog/sapient-nature/201403/the-nurturers-curse

You watch and prod hm to eat. You don't care if it's something he doesn't like. You're very firm and won't tolerate any resistance. You said all of those things. Being over-controlling can cause issues as he grows up. Can. I'm not saying it does every time. How did your parents handle meal time?

Jay, again, I'm very glad that what you're doing with your son is working to help his seizures and I hope it forever keeps them away. Just wanted to give you another perspective that you might not have thought about.

I am reading the article in your post. Thanks for providing it.

 

[Andrew]

Hi Jay1,

You may be interested in the following URLs:

http://www.ariconference.com/ari/newsletter/203/page5.pdf

http://www.autismwebsite.com/arri/v162/page2.pdf

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

 

[Blonde Angel]

Hmmmmmm
I would like to state the following facts about Autism.
Some kids with Autism do have issues with eating a nutritious comprehensive diet. What some parents do is what involves behaviour strategies to motivate the child to eat the food .
It takes patience and it's time consuming. I fortunately ( which is really unusual) don't have a kid who is fussy with foods. But, I do have issue in behaviour management, which requires therapist support.
The behaviour stategy for eg.
Going to movies.
She has a meltdown , you leave, next time you go back, you spend a little more time there and she slowly adapts to a new environment. It took 15 visits until she could sit through a whole movie.
Same principle in meal times , the child won't eat their veggies, well, you say "first carrot then stickers" . You find what motivates the kid and finish on a positive.
It's certainly not child abuse.
Kids with Autism have sensory issues . .. And they all have differing issues in behaviours, diet, learning, communication , social skills , gross and fine motor development.

 

[valeriedl]

What are the fruits and vegetables that your son gets to pick from to eat?

 

[AlohaBird]

I am not a religious person although I do believe in god. I did eat meat for about one year (more than 10 years ago) in 45 years of my life. Why do you say that it can not be a complete diet?

I am open for my son to eat meat if there are some benefits. They inject nitrates in meat which is another issue. He wants to eat fish and I will be fine if it was Hawaii or Alaska. Fish in other places have lot of mercury.

It does not contain all the nutrients your body needs without lots of supplementation. They only inject nitrates in processed meats such as salami, not "real" meat. Also it is important to get grass fed meat if you are going to include this. And wild caught seafood. The Monterey Bay Aquarium puts out a very good and comprehensive list of which fish are safe to eat where.

B12 can be a big factor. As of now, my son's B12 levels are much higher than normal range (due to fruits and B Complex supplement) and I have removed supplements for few days to bring the levels down. Going forward, we will simply rely on fruits only for his entire supply of vitamins.


He gets his protein from lentils, beans and cheese. Cheese is only about 5-10% of his diet. Additionally, the cheese is from goat and is processed by body differently compared to cow cheese. Goat cheese has high MCT while cow cheese has high LCT.

I think that chances of stones are less with goat cheese compared with cow. (Need to do more research on this issue)

Possibility of Kidney stones is something that needs to be continually watched. Making him drink lot of water.

Legumes (beans, lentils, etc.) will never be a complete protein source and they involve a lot of carbs for the little protein you do get. This makes structuring a keto diet doubly difficult. Yes, goat dairy is better than cow dairy. I think the kidney stone issue had to do with excess calcium for the level of potassium, the two were out of balance.

He used to eat eggs and wheat. I watched the video below and decided to take both eggs and wheat out. The premise is that the molecules in egg and wheat are very complex and the body finds it difficult to break them down.

Understanding the "10 Bad Foods" - with Dr. Glidden
https://www.youtube.com/watch?v=w2qCCTyTyPA

Foods That Heal & Foods That Kill
https://www.youtube.com/watch?v=szIUeYWRFN8

Dr. Perlmutter is okay with people eating eggs.

My knowledge about eggs is very rudimentary. Eggs have high cholestrol and it played a role in removing eggs from the diet. Kids on Ketogenic diet start having significantly high cholestrol levels. My son's cholestrol level are slightly elevated above the normal range.

Sorry, but that Dr. Glidden video is silly. Eggs are one of the easiest things a person can possibly digest (as long as they don't have an allergy of course). They are great in a keto diet because they have just the right balance of fat and protein.

I really think a growing kid needs a few more choices available to eat. He can only eat fruit and cheese for so long.

The best way to cover the nutritional bases is to provide as much variety as possible.

 

[valeriedl]

Many times kids won't eat things because they are embarrassed to, even if they do like it. They will hear from other kids and their friends that a food is disgusting so they think it is too. Even on TV sometimes some foods are made fun of. Kids usually don't like spinach because when your little you know that spinach is horrible. That's what just about every kid says right? I know I did, and I never even tired it! Kids may not want to eat it because they will be made fun of if other kids find out.

When I was a vegetarian in my 20's (I eat meat now) there were times when a friend would open my refrigerator and see a food in there, like asparagus, and say "Yuck you eat those!". I tell them their good and I really like them. I'll ask them if they've ever tried them and 9 times out of 10 they haven't but they'll always say that they heard they tasted disgusting.

I loved tofu but everyone just knew that it was disgusting without ever trying it. Sometimes they would laugh at me because I ate it. I'd even get made fun of for eating it. If I was younger I probably wouldn't want to eat it any more because of these reasons. Now that I'm older I don't care what my friends say about what I eat. If I like it then I'm going to eat it, they don't have to.

Even now people in general get made fun of for eating something. Certain types of bread, meat, cheese, vegetables, fruits and everything else. When you're younger you care about what people say and don't want them to laugh at you, when your older it usually doesn't matter.

 

[CathyAnn31]

Since the original person who started this thread is no longer here, there really is no reason to keep it going. Thread closed.