Dietary changes and seizure control

How much coconut oil do you take every day?

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masterjen said:
Basically all this amounts to is healthy eating and getting sufficient exercise. Easy enough, and I've been eating this way for years anyway :)
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It does sound like a no-brainer, but it's amazing how many people eat very little of these foods. It's obviously the first place to start with dietary changes for seizure control. One of the biggest issues that many parents have when they put their kids on the Ketogenic diet is that the kids are not used to eating these foods (all of which are Keto staples -- with exception of sweet potatoes).
 
The age you have "issues" as you say is irrespective, it makes no difference if you are 9 or 72 you still have the one problem. You cannot say you accept 100% blame, this is very wrong and you are not helping in anyway but you are denning the fact that your son has epilepsy. To say that foods now are laden with MSG, preservatives and anything else is probably very true. Epilepsy does no occur because you eat junk food or do not eat junk food. You may be able to control the seizures your child has even get full control but giving false hope by telling others that it worked for "me" so it will work for you is very wrong. It may help or it may work but there is no certainty about that and you cannot give a certainty.

The reason there were hardly any instances of Autism 30 years ago is because you never heard about it, people did not know what it was let alone about it. The same can be said for Epilepsy, Murder and a host of other things, but now we have the internet, television, radio, newspapers, people travel more and easier so news spreads.

Who gives their child exotic foods after they are born?

If you want to change your lifestyle in what you eat please do so but do not tell others they have to do the same because you are, give suggestions yes. Just because you drive a ford car and you find it economical does not mean I have to drive a ford car.

What applies to one person does not apply to all. What happens if I am allergic to something you are not but you still say try it, its good for you, just a little, go on and then I try it and have an allergic reaction. I know you are going to say none of that applies because I never said any of it?

Parents of the current generation of children (including you) do there best and no more can be asked of anybody but to do their best.


Yes you have to try, we all have to try, we all fail and get up and try again. You can blame yourself for something you did but you cannot blame yourself for your son having an "issue" that is not something you did.
 
If you want to change your lifestyle in what you eat please do so but do not tell others they have to do the same because you are, give suggestions yes. Just because you drive a ford car and you find it economical does not mean I have to drive a ford car.
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Darn it, I was just going insist that everyone drive a 1964 Aston Martin DB5. Not because I drive one, but because I do think we would all feel better with such a vehicle in hand. And 1964 was a very good year. :)

I agree that we have to be careful to distinguish between what has worked for us and what might work for others. Unfortunately, there is no one-size-fits-all way to control seizures. Dietary approaches such as the ones CWE members have had success with are very intriguing and exciting -- and hopefully there will be a way in the future do determine who will benefit the most from this (or any other ) anti-seizure treatment approach.

It's also important to remember that correlation is not causation. As an example: In the 1980s and '90s, epidemiological research found a correlation between the decrease in estrogen that occurs after menopause and an increased risk of cardiovascular disease. This seemed to jibe with other observational studies that had also suggested that hormonal therapy given to women at menopause would lower their risk of developing heart disease. HOWEVER...when a large randomized controlled trial was conducted, researchers were surprised to find that taking Hormonal Therapy actually increased women’s risk of cardiovascular disease (including blood clots, heart attacks and stroke). And additional analyses conducted of the data since have revealed other increased risks associated with HT, including breast cancer and dementia.
 
Fedup, I'm not really sure what exactly it is you are saying here.

I don't think anyone is "blaming" parents for their children's epilepsy.
Of course there are no guarantees that anything will work in any individual case, including the Rx from the MD.
Raising awareness about things like chemical additives in food can only help everyone to make more informed choices in the future.

You have a point that some of the rise in the number of autism cases could be due to better diagnosis, but not all of the rise. And it is a huge rise. Something is going on, probably more than one something.

Also that which is exotic for one person might be quite ordinary for another, like what Karen said about the kids in Thailand already having a very ketotic diet.
 
AlohaBird said:
You have a point that some of the rise in the number of autism cases could be due to better diagnosis, but not all of the rise. And it is a huge rise. Something is going on, probably more than one something.
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Another reason for the perceived rise in autism is that a child today can be "somewhere on the autism spectrum" (eg. Asperger's or other mild autism syndromes such as pervasive developmental disorder not otherwise specified (PDD-NOS)) whereas when my mother was a special education teacher 30-40 years ago a child was considered autistic only if they displayed the extreme behaviours (inability to use spoke language, self-injury behaviours such as head banging, strong aversion to human contact, hand flapping, and spinning of self and objects, etc.). Back then there was no such thing as an "autism spectrum", at least not in a way that was ever communicated to the teachers and professionals that worked with and diagnosed these children.
 
You have a point that some of the rise in the number of autism cases could be due to better diagnosis, but not all of the rise. And it is a huge rise. Something is going on, probably more than one something.
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I absolutely agree, my [unscientific] hunch is that there are probably multiple factors at work, and that environmental toxins referred to in the ucdavis link (metals, pesticides and infectious agents) will end up being at least part of the picture -- maybe in combination with somatic genetic mutations (new ones rather than inherited ones).

It reminds of how the scientific approach to schizophrenia has changed. At one time, the cause was thought to be bad mothering(!). The current thinking is that a combination of genetic and environmental factors are involved. There's still a lot of research to be done, a long way to go before the disorder will be considered "well-understood."
 
We still know very little about the causes of epilepsy and autism. Sometimes, with epilepsy, there's a clear cause, such as a head injury or a tumor, or some sort of encephalitis. But, more often than not, we don't know the cause. Likewise, the causes of autism are a bit nebulous at this time.

However, even without knowing the cause, we can define what triggers seizures for a lot of people with epilepsy. Sometimes, these triggers are dietary related. For instance, alcohol may be a trigger for seizures. Or, blood sugar spikes caused by high carb foods might be a trigger. And, certain additives, such as MSG may be a trigger. And, we can also find dietary changes and supplements that will make a difference in raising the seizure threshold and even gaining seizure freedom. Seizure triggers vary from person to person. And, if a high seizure threshold is gained, the triggers may not cause problems.

There is plenty of medical documentation that changes to the diet can bring good seizure control for many, and even seizure freedom for a smaller group of people.

For instance, the Ketogenic Diet for Seizures has been studied for many years, and has a documented success rate that is unparalleled by any seizure medication on the market today. And what makes that especially remarkable is that the studies are conducted on children (and now adults) who had very severe seizures that did not respond to medications. So, if the Keto diet can work so well with the worse-case scenarios, then the chances it can work for people with milder forms of epilepsy are probably even better. And, in these cases, the very strict Johns Hopkins protocol may not even be necessary.

I do not blame myself for my son's epilepsy. I do blame myself for just following the doctors' advice (AEDs) and not taking the initiative to do careful research and make adjustments to my son's diet prior to him losing his speech, becoming incontinent, and suffering severe cognitive loss. He is now seizure free, but a lot of damage has been done that is probably irreversible. The only way I can make amends for that is to make sure I stay on top of the research and make sure he's getting the best diet and treatment possible, and to try to spread the news to other parents so they don't take the tragic path we did.
 
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My diet that works for me:

1. Oatmeal with soy milk and blueberries.
2. Tomato sandwich with very little Mayo.
3. Salad of any kind.
4. Salmon
5. small potato, no rice.

I am not recommending this diet for anyone else. It works for me. I left a lot of foods I can and cAnnot eat.

We all have different allergies to different foods and drinks.
 
AlohaBird

What I wrote is in relation to something Jay1 has already written.

This is what was wrote

see you did not have issues till 72 years of age. Did you get to eat any junk food and drinks laden with MSG, preservatives and artificial colors when you were growing up? I do not know if Taco bell, Mcdonald and other fast food chains even existed 60-70 years ago. Raw milk used to be freely available in your days. Mothers used to cook food for their kids. I mean to say that the food supply was natural and less contaminated in your childhood days. There were hardly any instances of Autism 30 years ago.

Most of the brain development happens in initial years of life. Our kids start eating all these exotic food laden with pesticides immediately after they are born.

My son got it at 9 (I accept 100% blame as father for not working on his nutrition earlier). Folks are getting at earlier ages - 2,7, 9, 15, 20, 27 years of age. We should not be getting seizures at these young ages. There is a acronym in computer programming - Garbage In Garbage Out (GIGO) and it applies to human body also.

Parents of current generation of kids (including me as parent) deserve lot of blame for messing up kids. If one parent is a junk food addict, then other parent needs to step up. Most of the mothers in today's generation do not have any desire to cook for their kids. They drink coke instead of water and serve zero nutrition pizza for lunch and dinner for multiple days in a week. What kind of example are we setting up for kids?

Yes, I do not know what your issues are (other than reading on your profile). However, I can infer from your posts that you eat healthy.

I am very optimistic and can bet that your upcoming EEG will show significant improvements. Prayers of other folks do matter.
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I received a call from the hospital. They wanted to schedule a 24 hour Video EEG for my son to see if his brain shows any kind of seizure activity.

They also wanted me to reduce his Magnesium (He gets only 400 mg every day).


What do you folks feel or recommend? Should we reduce Mg and go for Video EEG? What kind of EEG do you recommend for a 9 year old boy who has never taken drugs and is seizure free for last 6.5 months? He had two very prolonged status epilepticus 6.5 months ago.

I have already exhausted my deductible and there is no cost to me.
 
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Fedup said:
AlohaBird
What I wrote is in relation to something Jay1 has already written.
This is what was wrote
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I eventually got what you were referring to but it was back up the thread quite a ways. That's why I missed it.
I think blaming yourself or anyone else in 20/20 hindsight is kind of pointless but Jay does make a valid point that parents need to step up and make responsible choices. I doubt anyone these days, unless they have been living under a rock, could give sodas and cheetos to their kids and claim they didn't know that was not healthy.

I don't think we should oversimplify things to say that sodas+cheetos=seizures.
On the other hand, too much junk food + too little good nutrition= a less than optimal state of health which then leaves a body vulnerable to all kinds of things including seizures.
 
Jay1 said:
I received a call from the hospital. They wanted to schedule a 24 hour Video EEG for my son to see if his brain shows any kind of seizure activity.
They also wanted me to reduce his Magnesium (He gets only 400 mg every day).
What do you folks feel or recommend? Should we reduce Mg and go for Video EEG? What kind of EEG do you recommend for a 9 year old boy who has never taken drugs and is seizure free for last 6.5 months? He had two very prolonged status epilepticus 6.5 months ago.

I have already exhausted my deductible and there is no cost to me.
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400 mg seems like a lot to me but I don't know what size your son is. Has the doctor done a test on his Mg level?
Sure, get the Veeg. There is nothing wrong with gathering as much data as possible.
 
Hmm, the daily dose should be 400mg of Mg? Thats odd? Is there another recommended level in the US than in EU?

What could possibly be the reason to lower the Mg? Unless number two is loose, there seems to be no reason? Sure its a kid and not an adult. Is this part of the EEG test? Why?
 
That's the RDA for an adult. A nine year old can be a lot of different sizes depending on when they hit their growth spurt.

As long as kidney function is good, excess Mg gets excreted without harm but if there is any kidney issue, then excessive doses could be problematic.

I only have one kidney so I am careful to get enough Mg but not overdo it. But I never knew I only had one kidney until I was about 30.
 
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AlohaBird said:
Also that which is exotic for one person might be quite ordinary for another, like what Karen said about the kids in Thailand already having a very ketotic diet.
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I should probably clarify, even though the Thai diet is full of all kinds of very good stuff that work well with the Keto diet (coconut milk, veggies, spices, etc.), the typical Thai diet is not Ketotic -- there's all those noodles and rice, plus sweet syrupy dipping sauces, and sweet drinks and desserts. And the city kids have discovered Dunkin Donuts and McDonalds and KFC and Starbucks, etc. Obesity is quite an issue with city kids these day (the village kids still eat a pretty healthy diet). The diabetes rate among adults is 8.5%, which is close to the U.S. rate of 9.3%.
 
Yes, we are exporting our bad habits to the rest of the world and wondering why they are "catching up" with us in terms of diabetes, obesity, heart disease, etc.
 
Jay1 said:
I received a call from the hospital. They wanted to schedule a 24 hour Video EEG for my son to see if his brain shows any kind of seizure activity.

They also wanted me to reduce his Magnesium (He gets only 400 mg every day).


What do you folks feel or recommend? Should we reduce Mg and go for Video EEG? What kind of EEG do you recommend for a 9 year old boy who has never taken drugs and is seizure free for last 6.5 months? He had two very prolonged status epilepticus 6.5 months ago.

I have already exhausted my deductible and there is no cost to me.
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The RDA for 9 year old male is 240 mg and the upper tolerable limit for a 9 year old is 350 mg. So, he's a little over the upper limit with 400 mg. Magnesium can be very helpful for sleep, and also for calming the autistic child, and can help with seizures (works very well for Jonathan).

Too much magnesium can have a laxative effect, causing diarrhea. Very large amounts of magnesium can cause toxicity that can be fatal.
https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

I'd recommend going for the 24 hour EEG, especially since you've already met the deductible for the year. I've found that the 30 minute ones done in the doctor's office are virtually useless. EEGs really need to catch the sleep waves in children, because a lot of children have their major seizure activity at night -- that's when the brain will often show abnormal spikes and waves on an EEG. The video EEG can be very helpful, because it can help determine if certain "odd" things a child does is seizure activity. For instance, Jon used to tremble a lot and had tremors in his hands. But the video EEG was able to let us know this wasn't seizure activity. (It was actually a side-effect of Depakote -- now that he's off that med, we don't see that). Also, if your son is having subliminal seizures, the EEG can catch that.

Jon's first video EEG in the hospital (when he was 6) was 48 hours, and it didn't catch anything. He was having about 3 seizures a week, but just didn't happen to have any while on the electrodes. Six months later, he was in the ICU with status epilepticus, and they put the video EEG back on and caught a number of seizures. The thing with Jon is that, when he's not having seizures, he has fairly normal EEGs. This happens with a lot of people with epilepsy, actually. So, I don't put my complete trust in them as far as ruling out seizure activity. But if anything IS caught on the EEG, it can be very helpful information.
 
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