Dietary changes and seizure control

[Cint]

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 (AEDs). Fortunately, he started on natural treatment right away. He never had to face damage caused by AEDs. I was lucky to have google on my side and gain from the wisdom of people suffering from seizures and epilepsy.

How is that different than the several times I've gone into status and ended up in the ER? How is that different than the severe burns I suffered due to the first TC seizure I ever had? I wasn't taking any meds, then, either. So you may want to re-consider what your preaching, since your son is still growing. As they grow, their body/brains change.

Most of the people here or their parents did not have enough knowledge in the beginning stages and have been taking multiple AEDs for years. These AEDs 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 AEDs reduce immunity and cause more seizures and increase SUDEP. It will take years to undo the damage caused by years of taking AEDs.

Where is it said that the AEDs increase the risk of SUDEP?

From www.epilepsy.com

What is SUDEP?
What happens?
The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

One does need to exercise, watch their diet and get lots of rest to help control seizures and prevent SUDEP.

I personally know a woman who lost her 16 year old daughter to SUDEP and has started her own campaign for this awful situation.

AEDs 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.

onder: And nothing can fix a broken brain!

 

[Fedup]

Jay1

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.

So what you are saying is that I did not get enough nutrients and so was born with epilepsy, so its my mothers fault I am like this.

 

[Nakamova]

Epilepsy is a descriptive term rather than a predictive one: It describes what we have in common, namely having experienced "two or more seizures". But it doesn't really tell us anything about what came before or what will come after for any given individual, especially because we differ so widely in terms of when the seizures start, what the causes might be, what forms they take, how they respond to treatment, etc.

Keeping those differences in mind, we can still offer each other support, empathy, advice, information, and respect.

 

[Bidwell]

Wonderful statement!

 

[masterjen]

Jay1;
As you can tell from the thread you have started, from reading other threads and individuals' personal profiles, a lot of folks here have had epilepsy for many years and have struggled to control their seizures. Many have had months or even years long lulls with no seizures, only to have them return. So to say you have eliminated your son's seizures when he has had only two in a short period of time, and to say you are 100% positive he will not have any more seizures is going to be met with anger because many people here know how persistent a seizure disorder can be and don't want your son to suffer additional seizures, and because someone whose child has had seizures for less than a year is telling them what to do. You may feel your heart is in the right place, but try a gentler approach next time One approach might be: "My son had two GM seizures (etc.). I am hoping to prevent further seizures without AEDs. I would like to hear from other folks who have done the same thing themselves or with their children. This is the approach I am taking (list what you are feeding your son); what is your approach?"

I am curious, since it is not mentioned in this particular thread of yours: what were the results of your son's EEG and MRI? Were there extenuating circumstances that led to his having seizures, such as illness, medication reaction, etc. Is there another parent in your son's life, and if so was it difficult to reach a mutual decision regarding your son's treatment? Do you have a doctor to oversee your son's treatment plan?

 

[Fedup]

Nakamova

Thank you for such an important reminder.

 

[HopeCoconutWorks]

Agreed with Jay!

Hello Jay1,

Saw your post and gave me more confident that my son will be able to recovered from seizures.

On April 15th, 2015 .. we took a long flight from Asia to America. In flight, my 5 years old son passed out with few jerk movements on his right arm. He became concious after few minutes. We had no ideal what it was and the only explaination was he did not have enough sleep and foods (previous days) before we took off. We thought it was just an one time incident! Well, we were wrong! On May 5th morning, he had an absence seizure lasted less than 1 minute. Next day, he passed out again in evening lasted within 1 minute. Following days, he has myoclonic jerks, twitches and it's very obvious. We freaked out! We start feeding him nutritious homemade foods. He got better but still see some twitching.

Once we got our company insurance, we took him for emergency and they did a CT scan and blood test, everything is fine. The doctor based on our description and advise us to put my son my Keppra. We rejected because we find there is not enough evident suggested to put my son in long term medicine. Doctor indicate to take this med for at least 6 months!

Me, like you ... couldn't sleep and trying to google online all day and night ... and found coconut oil, magnesium, epsom salt bath, turmeric, etc helps. I first bought coconut oil, start using it in cooking. One morning, he wakes up with obvious twitching again! Then we went to Whole Food and get Magnesium Oil and applied on his body. He feel the itch and really hates it, but within 1 hour, all the twiches are gone and last for the rest of the day pretty much! I also bought a Kids Calm Multi vitamin which contains magnesium. We kind of know he suffers from nutrition deficiency so we starts him with this multi liquid. So, I gave him coconut oil in his milo (a kind of coco powder) every morning follow by kids calm multi. Have him on Epsom salt bath every alternate day, Cook with coconut oils in his meals, fish, eggs, spinach, carrots, etc. Applied Magnesium oil in morning, afternoon and night mixed with coconut oil to minimized the itch. 5 days after this routine, he was totally back to normal. No jerking or twiching! I can feel he is normal again!

So I thought it's just nutrition issue. It was 10 days he back to normal. On day 11 (June 10), I DID NOT GIVE HIM COCONUT OIL, MAGNESIUM OIL AND MULTI (I was trying to test if he missed all these in school days, what will happend?). At 430PM, the jerking comes back ... I then gave him the Multi and applied mag oil. The same day, I did not feed him a lot of foods (it's my fault taking advantage of he is being normal). Next morning, he passed out again lasted around 1 minute! Since then, I gave him Multi and Mag oil. Not much coconut oil. Plus I gave him whole milk, OJ, bread ... the twitching and jerking still there though no more passed out.

Jay1, I am wondering if there is a problem since I include milk, bread and OJ in his diet making the seizure still resist. Today I start him over again with Coconut oil, I am going to exclude bread and OJ for him, just like first time try out successfully. The only diff this time and first time is that I am giving him whole milk coz its important for nutrition prospective. Does your son takes milk, low fat, OJ, etc?

Also, not sure if your son experience any teeth grinding at night? My son has it and I once thought its the coconut oil!

I have a lot of confidence in Coconut Oil and Magnesium because you can find lots of articles using these 2 elements for seizures. I strongly feel it's a nutrition deficiency causing seizures. My husband and I both in IT too and very busy and lazy to cook, causing our son suffer! Very regret and am trying to make a healthy life for all of us!

 

[AlohaBird]

The GARD protocol (Dr. John Symes, dogtorj.com) makes the distinction between cow milk dairy products and others such as goat or sheep. I have cut out cow dairy entirely but kept some goat cheese. The structure of the protein is different in goat milk, much closer to that found in human breast milk.
Cutting out the grains is a good first step. You also need to take a close look at ingredients lists to get rid of things with fake colorings and flavorings like aspartame and MSG.

The four things that need to go are the gluten grains, corn, soy, and cow milk products

 

[AlohaBird]

to say you are 100% positive he will not have any more seizures is going to be met with anger because many people here know how persistent a seizure disorder can be and don't want your son to suffer additional seizures, and because someone whose child has had seizures for less than a year is telling them what to do. You may feel your heart is in the right place, but try a gentler approach next time One approach might be: "My son had two GM seizures (etc.). I am hoping to prevent further seizures without AEDs. I would like to hear from other folks who have done the same thing themselves or with their children. This is the approach I am taking (list what you are feeding your son); what is your approach?"

Jay, while I totally agree with the plan as you laid it out in your OP and actively live by all of those things except the Carnitine supp myself, I also have to agree with masterjen here that, not only do you come across as cocky, you also walked in with this, "I can't believe you all aren't discussing these things!" Um, we have been discussing them, all of them, quite often in fact. You just weren't here. Next time try doing an archive search before accusing everyone around you of willful ignorance.

I believe your heart is in the right place and you have done an impressive amount of research in so little time. Stick around and be a part of this community. I have the feeling we would be on the same side of the argument more often than not.

Welcome

 

[Cint]

And they were even discussed before you joined CWE, Aloha.

 

[AlohaBird]

I'm sure they were.

 

[Cint]

On April 15th, 2015 .. we took a long flight from Asia to America. In flight, my 5 years old son passed out with few jerk movements on his right arm. He became concious after few minutes. We had no ideal what it was and the only explaination was he did not have enough sleep and foods (previous days) before we took off. We thought it was just an one time incident! Well, we were wrong! On May 5th morning, he had an absence seizure lasted less than 1 minute. Next day, he passed out again in evening lasted within 1 minute. Following days, he has myoclonic jerks, twitches and it's very obvious. We freaked out! We start feeding him nutritious homemade foods. He got better but still see some twitching.

Once we got our company insurance, we took him for emergency and they did a CT scan and blood test, everything is fine. The doctor based on our description and advise us to put my son my Keppra. We rejected because we find there is not enough evident suggested to put my son in long term medicine. Doctor indicate to take this med for at least 6 months!

Was your son tested for hypoglycemia or diabetes? Did they check his A1c level? Sometimes people can pass out/ seize due to low blood sugar.

So I thought it's just nutrition issue. It was 10 days he back to normal. On day 11 (June 10), I DID NOT GIVE HIM COCONUT OIL, MAGNESIUM OIL AND MULTI (I was trying to test if he missed all these in school days, what will happend?). At 430PM, the jerking comes back ... I then gave him the Multi and applied mag oil. The same day, I did not feed him a lot of foods (it's my fault taking advantage of he is being normal). Next morning, he passed out again lasted around 1 minute! Since then, I gave him Multi and Mag oil. Not much coconut oil. Plus I gave him whole milk, OJ, bread ... the twitching and jerking still there though no more passed out.

If you did not feed him much food, it does sound like it could be low blood sugar. I have Type 1 Diabetes along with epilepsy and if I do not get something to to eat every 4 hours, I start shaking and feel I could pass out. If my glucose level fall below 60 or down to 50, I really feel faint!

More info on seizures and Diabetes:

http://www.ncbi.nlm.nih.gov/pubmed/22956556

Seizures and type 1 diabetes mellitus: current state of knowledge.

In this review, we will try to analyze the possible coexistence between epilepsy or seizures and type 1 diabetes mellitus (T1DM), in order to establish if there is more than a casual association, and to investigate possible mechanisms underlying this link. Anti-glutamic acid decarboxylase antibodies (GAD-Abs) have been associated with T1DM and a great number of neurological diseases such as epilepsy. Epilepsy can be a feature of a large variety of autoimmune or inflammatory disorders. GAD-Abs can have a role at the basis of the possible link between epilepsy and T1DM, although their real pathogenetic mechanism in neurological diseases is still unknown. Metabolic conditions such as hypoglycemia and hyperglycemia, common problems in diabetic patients, may be also implicated, even if their underlying mechanism is minimally understood.
PMID: 22956556 [PubMed - indexed for MEDLINE] Free full text

Also, not sure if your son experience any teeth grinding at night? My son has it and I once thought its the coconut oil!

I know you're asking Jay this question, but just to ease your mind, my now grown son used to grind his teeth when growing up. He had asthma.

I have a lot of confidence in Coconut Oil and Magnesium because you can find lots of articles using these 2 elements for seizures. I strongly feel it's a nutrition deficiency causing seizures.

If you feel your son has a nutrition deficiency, are you taking him to a nutritionist or specialist?

 

[Jay1]

Hello Jay1,

Saw your post and gave me more confident that my son will be able to recovered from seizures.

On April 15th, 2015 .. we took a long flight from Asia to America. In flight, my 5 years old son passed out with few jerk movements on his right arm. He became concious after few minutes. We had no ideal what it was and the only explaination was he did not have enough sleep and foods (previous days) before we took off. We thought it was just an one time incident! Well, we were wrong! On May 5th morning, he had an absence seizure lasted less than 1 minute. Next day, he passed out again in evening lasted within 1 minute. Following days, he has myoclonic jerks, twitches and it's very obvious. We freaked out! We start feeding him nutritious homemade foods. He got better but still see some twitching.

Once we got our company insurance, we took him for emergency and they did a CT scan and blood test, everything is fine. The doctor based on our description and advise us to put my son my Keppra. We rejected because we find there is not enough evident suggested to put my son in long term medicine. Doctor indicate to take this med for at least 6 months!

Me, like you ... couldn't sleep and trying to google online all day and night ... and found coconut oil, magnesium, epsom salt bath, turmeric, etc helps. I first bought coconut oil, start using it in cooking. One morning, he wakes up with obvious twitching again! Then we went to Whole Food and get Magnesium Oil and applied on his body. He feel the itch and really hates it, but within 1 hour, all the twiches are gone and last for the rest of the day pretty much! I also bought a Kids Calm Multi vitamin which contains magnesium. We kind of know he suffers from nutrition deficiency so we starts him with this multi liquid. So, I gave him coconut oil in his milo (a kind of coco powder) every morning follow by kids calm multi. Have him on Epsom salt bath every alternate day, Cook with coconut oils in his meals, fish, eggs, spinach, carrots, etc. Applied Magnesium oil in morning, afternoon and night mixed with coconut oil to minimized the itch. 5 days after this routine, he was totally back to normal. No jerking or twiching! I can feel he is normal again!

So I thought it's just nutrition issue. It was 10 days he back to normal. On day 11 (June 10), I DID NOT GIVE HIM COCONUT OIL, MAGNESIUM OIL AND MULTI (I was trying to test if he missed all these in school days, what will happend?). At 430PM, the jerking comes back ... I then gave him the Multi and applied mag oil. The same day, I did not feed him a lot of foods (it's my fault taking advantage of he is being normal). Next morning, he passed out again lasted around 1 minute! Since then, I gave him Multi and Mag oil. Not much coconut oil. Plus I gave him whole milk, OJ, bread ... the twitching and jerking still there though no more passed out.

Jay1, I am wondering if there is a problem since I include milk, bread and OJ in his diet making the seizure still resist. Today I start him over again with Coconut oil, I am going to exclude bread and OJ for him, just like first time try out successfully. The only diff this time and first time is that I am giving him whole milk coz its important for nutrition prospective. Does your son takes milk, low fat, OJ, etc?

Also, not sure if your son experience any teeth grinding at night? My son has it and I once thought its the coconut oil!

I have a lot of confidence in Coconut Oil and Magnesium because you can find lots of articles using these 2 elements for seizures. I strongly feel it's a nutrition deficiency causing seizures. My husband and I both in IT too and very busy and lazy to cook, causing our son suffer! Very regret and am trying to make a healthy life for all of us!

I have lot of respect for all the folks who are battling seizures and epilepsy. The people on this forum have gained tremendous knowledge and they are one of the smartest people.


I never had seizures and epilepsy nor knew someone with seizures and epilepsy. I did not even understand the word seizure six months ago. Watching my son having seizures has been the worst experience of my life. This is much more painful than having seizures or epilepsy myself. I would gladly trade seizures or epilepsy with my son if it meant that my son remains healthy. I would not even wish seizures or epilepsy on my worst enemy.


Imagine having a powerful desktop computer with powerful CPU and graphic cards. But the power supply is a measly 300 Watts. This computer will keep on rebooting. Increase the power supply to 800 Watts and the rebooting will go away.

Here is the analogy - Your brain is this powerful computer. However, the brain is not getting enough energy which causes it to reboot (seizures) many times. Increase the power to powerful computer in your brain and rebooting will stop.



The key question is "How do we increase power to your brain and develop new neurons?" I believe anything which accomplishes above will reduce or eliminate seizures in most of the cases.


(1) Coconut oil and Palm kernel oil are the only oil in the world which can supply this alternative energy supply to brain. They have medium chain fatty acids which can supply ketones to brain directly. I have not been able to find Palm Kernel Oil. C6 found in coconut oil acts as anti-convulsant.

Please increase coconut oil slowly otherwise it can cause GI distress and diarrohea. 40% of the calories need to come from coconut oil or coconut milk. Get cold pressed organic one from Costco or Sams Club.


(2) Goat milk also has high content of Medium chain fatty acids. Cow milk has Long Chain fatty acids which requires body to work quite harder before it can be used by brain.


(3) Hemp oil is a super food. I do not know how it works.


(4) Flax and Hemp seeds are super foods and high sources of protein, magnesium and Omega-3 fatty acids. Brain is 70% fatty tissue and it does not get enough of Omega-3


(5) Avocados are high in good fat and supply 15 different amino acids to body.


(6) Turmeric can cross blood brain barrier and develop new neurons.


(7) L-Carnitine can cross blood brain barrier and develop new neurons.



All the power to you. You have caught your son's problem in very early stages. Your kid's childhood comes only once and you made the right choice in refusing Keppra or any other drug.


As for my son, I have removed cow milk and bread completely. I am not sure what OJ is.

Teeth grinding - My son has done it whenever he has new tooth coming out. I guess it hurts


Not even one neurologist or anyone else has been able to tell me how these drugs work. A sick child is a lifelong customer for drug companies and will net almost half a million dollars over his lifetime. Please google and watch a movie "First Do No Harm" on Youtube

Please do get a prescription of Diastat for emergency use and keep one at home and provide one to school.

 

[Bidwell]

Dear Jay1, I think one problem we may be encountering is LANGUAGE. I think English is not your native language. Right? I think that we don't take in what you are telling us in the spirit you expect because it must seem to you that we do not understand you properly [the way you want us to understand you]. And I think we don't understand you the way you WISH we did because YOU do not know how to use the English language to exchange ideas when people are attempting important communications between EACH OTHER. It takes a lot of practice and also interest. I personally feel like you are hitting me over the head with your good ideas and that wears on me. I hope you keep posting, but I wish I could convince you to relax and take this opportunity to pay attention to the language of the other people as well as your own. Some of it is silly, some of it is brilliant, some of it is worth researching, and a lot of it might help you with new ideas. I hope you relax and keep posting.

 

[Jay1]

Dear Jay1, I think one problem we may be encountering is LANGUAGE. I think English is not your native language. Right? I think that we don't take in what you are telling us in the spirit you expect because it must seem to you that we do not understand you properly [the way you want us to understand you]. And I think we don't understand you the way you WISH we did because YOU do not know how to use the English language to exchange ideas when people are attempting important communications between EACH OTHER. It takes a lot of practice and also interest. I personally feel like you are hitting me over the head with your good ideas and that wears on me. I hope you keep posting, but I wish I could convince you to relax and take this opportunity to pay attention to the language of the other people as well as your own. Some of it is silly, some of it is brilliant, some of it is worth researching, and a lot of it might help you with new ideas. I hope you relax and keep posting.

Hello Bidwell,

You are right that English is not my native language. You are right that I need to relax and be more polite and humble in our conversations. I will try.

Regards,
Jay

 

[Bidwell]

Jay, The idea is to relax because it FEELS BETTER for you -- A LOT BETTER. And I think you have every reason to be proud, not humble. It is true that you come across as arrogant but given the way native speakers use the English language, we would not want you to replace being Proud with the word Humble.
Besides being a father and a husband and going to work, what an incredible journey you are on. Take it easy and enjoy it! Even while we discuss seizures.

 

[Carpentergirl]

I just wanted to welcome you Jay! And think your posts are mighty refreshing! And gee whiz...what a welcome for a first post...god forbid someone new post something trying to be helpful...lol

 

[HopeCoconutWorks]

Question / Answer

Was your son tested for hypoglycemia or diabetes? Did they check his A1c level? Sometimes people can pass out/ seize due to low blood sugar.

Did you meant Glucose in the blood test report? If so, it appears a bit high because when we took him to emergency, he was not having seizure, he was perfectly fine but we thought he passed out 2 weeks ago was scary, so we took him there. We are new to the area so couldnt find a family doctor to start. Before he took the blood test, he had some foods, maybe thats why its high. Doctor didnt seem to concern anything about the blood work and CT scan.



If you did not feed him much food, it does sound like it could be low blood sugar. I have Type 1 Diabetes along with epilepsy and if I do not get something to to eat every 4 hours, I start shaking and feel I could pass out. If my glucose level fall below 60 or down to 50, I really feel

Yes, I think his blood sugar must be low when seizure happened and I am very sure its the nutrition and consumption issue. 2 times when he passed out was because he didnt get enough foods during the previous day. Of course, he must be long time deficiency causing the breakdown.


I know you're asking Jay this question, but just to ease your mind, my now grown son used to grind his teeth when growing up. He had asthma.


If you feel your son has a nutrition deficiency, are you taking him to a nutritionist or specialist?

We are in process of taking him to see a nutritionist.

 

[HopeCoconutWorks]

Hi Jay,

OJ = Orange Juice.

What kind of blood work you have ur son made every 2 months? Does it include all vitamins and minerals checking? is there a name for such blood work?

 

[HopeCoconutWorks]

sorry, Cint ...

i first reply ur posted by clicked on Quote .... new to the site.