Dietary changes and seizure control

[AlohaBird]

Hi Jay

I hope you realize that I am not saying you are wrong or that your research is not appreciated. I find the links you posted very interesting.

But compare these two sentences:

1) AEDs cause seizures! Look here are a bunch of links that prove it!

2) Here is some interesting research you might want to read. It appears that some AEDs in some circumstances can actually make seizures worse for some people.

No one is saying that you can't have a personal bias. Each person is entitled to their own opinion and entitled to express it. It helps though if you label it as such when you talk. Saying, "This is what I believe works in my case" is fine. Saying, "This is what will work for the whole world in every case" comes across as preaching and talking down to people who have a lot of experience and knowledge about their own individual cases and don't need you to "save their souls".

I don't know about the school system of all of Hawaii but I know that the schools here on Molokai are not so great. It's not one of the richer islands so there is not much of a tax base for funding.


About me and my coconut oil consumption. This is not a new thing for me. I've been using it for years so there is not going to be any major change to observe. I don't measure my ketones. I've done this for so long I know when I am or am not in ketosis just by how I feel. Also I consume all different kinds of coconut products, not just the oil. I use coconut cream in my coffee, bake with coconut flour, make macaroons with shredded coconut, drink coconut water, etc. So I'm not really sure how much of the oil is in all of those things.

 

[Jay1]

Link to downloadable book (107 pages) on SUDEP (from Epilepsy Australia)

Sudden Unexpected Death in Epilepsy - a global conversation
Edited by Denise Chapman, Brendon Moss, Rosemary Panelli. Russell Pollard


http://www.epinet.org.au/downloads/File/SUDEP%20A%20Global%20Conversation.pdf

 

[Jay1]

Disclaimer - The title of the link in this post is same as the title of the original paper or article. Please do not go by title alone as it may not accurately reflect the results of the research paper. It is important to read the complete article and then make your own judgment.



Epilepsy drug linked to tenfold increase in autism: researchers

http://www.telegraph.co.uk/news/health/news/9836953/Epilepsy-drug-linked-to-tenfold-increase-in-autism-researchers.html


The prevalence of neurodevelopmental disorders in children prenatally exposed to antiepileptic drugs

http://jnnp.bmj.com/content/early/2013/01/21/jnnp-2012-304270.abstract

 

[KarenB]

But if it occurs equally frequently with or without an AED in the mix, how can you be sure it has anything to do with the AED?

With regard to the "ebb and flow" of epilepsy, I believe that without any treatment at all, it's more flow and less ebb. I doubt there are very many people with well established epilepsy whose seizures simply just go away without doing anything at all. It's much more likely that the seizures will gradually grow more frequent, due to the repeated insult to the brain.

And, if the particular medication is ineffective, then it's pretty much the same as giving no medication at all. Except that there's lots of crappy side effects.

Jay 1 did provide substantial evidence that certain drugs, such as Tegretol and the benzos, are known to make a number of certain seizure types worse. As I was reading those articles, it struck me how easy it would be for the neurologist makes the wrong call.

 

[AlohaBird]

Oh yeah, well we haven't even talked about side effects yet.

That would be where I think there is a stronger case for a casual link between AEDs and more seizures down the road. Through the intermediary steps of nutrient malabsorption, sleep disturbances, endocrine disruption, etc.

Unfortunately those effects would be so long term with so many confounding factors in the mean time that nobody has bothered to study them.

 

[KarenB]

KarenB has explained in a wonderful and perfect way. Her wisdom and experience continues to provide confidence to me that I am on right track.

Right quantity of MCT oil (same as coconut oil) alone was enough in stopping seizures in Vanderbilt University research and another study of 145 kids in clinical trials in London Hospital. I will still add at least some quantity of coconut, turmeric and fish oil as early as possible. These things are neurogenerative and will nourish the brain neurons even in a person with no seizures. Let the brain heal or become better sooner rather than later.

I happened to read somewhere that overuse of Medium chain fatty acids will not cause ketoacidosis. However, overuse of Long chain fatty acids such as animal cheese, butter and milk can cause ketoacidosis. I have reduced long chain fatty acids in my son's diet.

Junk food - One definitely needs to take them out completely.

Actually, in the Vanderbilt case study, the seizures did not stop, they were reduced from multiple seizures daily to about one a week. Still, that's pretty good. However, just one person. Can you post the link to the London Hospital study with the 145 kids?

When Jon was consuming 8 grams of MCT per meal, his ketone levels went up to 8 and higher -- dangerously high, and he struggled with acidosis with bicarb levels around 15. The Zonegran med also contributed to acidosis. He now takes 4 g of MCT oil per meal, and ketones are happily between 4 to 6, and bicarb levels an excellent 24.

 

[Bidwell]

Jay, I really do manage to measure 2 tablespoons of coconut oil a day and I also manage to get my medications into me, but that's the extent of it. I am afraid I can't join you in charting my blood ketone level. I am not capable of doing it! The coconut oil in conjunction with fish oil has made a big difference in the way I feel and I am hoping that the VEEG I am about to undergo will show no seizure activity at all, in which case I will celebrate. But I am no scientist and measurements make me nervous.

 

[KarenB]

I noticed from the polls that majority of the people do not take coconut oil.



Here are four people who have been taking coconut oil regularly.

(1) My own son - 5 or more tablespoon
(2) AlohaBird - 3 tablespoon
(3) HopeCoconutWorks 's son - 3 tablespoon
(3) Bidwell - 2 tablespoon

It will be quite interesting to track the progress of these four folks over the next couple of months to find out if the coconut oil kept any kind of seizures away.

I was also wondering about the blood ketone levels of AlohaBird, HopeCoconutWorks 's son and Bidwell. My son's blood ketone level is 2.56

I put "none" because Jon takes MCT oil, which is derived from coconut and palm oil, but I was only using regular coconut oil occasionally, mainly in making chocolate candy (sweetened with Stevia, not sugar of course). However, since I answered the poll, and after reading through this thread, I decided that lauric acid, which is in coconut oil, but not processed MCT oil, is a good anti-inflammatory and anti-microbial agent, so I just started adding regular coconut oil into Jon's morning muffins. Not so much to stop seizures (since Jon has been seizure free for a couple years now), but to possibly help with the Inflammatory Bowel Disease. Combined with the MCT oil he's already taking, it may also increase his ketones a bit and allow him more carbs.

So, I'm changing my answer from "none" to 10 grams of coconut oil a day. I think that would be 2 1/2 tablespoons. Plus he gets 12 g of MCT oil a day, about 3 tablespoons.

 

[Jay1]

Jay, I really do manage to measure 2 tablespoons of coconut oil a day and I also manage to get my medications into me, but that's the extent of it. I am afraid I can't join you in charting my blood ketone level. I am not capable of doing it! The coconut oil in conjunction with fish oil has made a big difference in the way I feel and I am hoping that the VEEG I am about to undergo will show no seizure activity at all, in which case I will celebrate. But I am no scientist and measurements make me nervous.

Measuring blood ketones is a very simple test. You should even ask for comprehensive blood profile to check for potassium, magnesium, carnitine levels. They can do it the same day as your EEG.

I have enrolled my son for online account with hospital and I can see all lab results online 3-4 days after they take blood during our visit.

 

[Bidwell]

Thanks but no thanks!

 

[KarenB]

Hi Jay


About me and my coconut oil consumption. This is not a new thing for me. I've been using it for years so there is not going to be any major change to observe. I don't measure my ketones. I've done this for so long I know when I am or am not in ketosis just by how I feel. Also I consume all different kinds of coconut products, not just the oil. I use coconut cream in my coffee, bake with coconut flour, make macaroons with shredded coconut, drink coconut water, etc. So I'm not really sure how much of the oil is in all of those things.

Jon's pediatrician when we were living in Thailand said that the Thai kids on the diet consume a lot of coconut milk -- one key meal is the common Thai soup - Tom Kha Gai, which is coconut milk and chicken and usually ginger, lemongrass, a little curry paste, cherry tomatoes, mushrooms, and some green stuff on top like chives or cilantro. Naturally low carb, and just need to add a little coconut oil to get the fat a little higher.

Some efficacy studies by Siriraj University found that the Thai kids have a better response rate to the diet than in the studies done by Johns Hopkins, etc. Almost 1/4 the kids were seizure free after just one month on the diet, and about 2/3 had 90% seizure reduction.

 

[KarenB]

Measuring blood ketones is a very simple test. You should even ask for comprehensive blood profile to check for potassium, magnesium, carnitine levels. They can do it the same day as your EEG.

I have enrolled my son for online account with hospital and I can see all lab results online 3-4 days after they take blood during our visit.

It's a simple test, but not cheap. We did manage to get Jon's home blood ketone monitor covered by insurance, but if it weren't, I don't think we could afford to check ketones very often. In fact, I don't check them very often anyway -- only when making some adjustments to the diet or if he seems "off." My little guy doesn't appreciate getting his finger stuck.

 

[Jay1]

It's a simple test, but not cheap. We did manage to get Jon's home blood ketone monitor covered by insurance, but if it weren't, I don't think we could afford to check ketones very often. In fact, I don't check them very often anyway -- only when making some adjustments to the diet or if he seems "off." My little guy doesn't appreciate getting his finger stuck.

I have already paid our deductible due to two hospitalizations for my son.

Now, Insurance is paying 100% and I did not even get to know about the cost of the Ketone Test.

Just out of curiosity - Do insurance companies cover the ongoing cost of AEDs or it is completely out of pocket?

 

[Bidwell]

Of course they pay.

 

[AlohaBird]

Jon's pediatrician when we were living in Thailand said that the Thai kids on the diet consume a lot of coconut milk -- one key meal is the common Thai soup - Tom Kha Gai, which is coconut milk and chicken and usually ginger, lemongrass, a little curry paste, cherry tomatoes, mushrooms, and some green stuff on top like chives or cilantro. Naturally low carb, and just need to add a little coconut oil to get the fat a little higher.

Some efficacy studies by Siriraj University found that the Thai kids have a better response rate to the diet than in the studies done by Johns Hopkins, etc. Almost 1/4 the kids were seizure free after just one month on the diet, and about 2/3 had 90% seizure reduction.

I love Thai style soups. I have been adding Moringa leaves to mine as greenery but also as a concentrated nutrient source.

Moringa is available online as a tea, a powder, capsules of the powder, soup mix (basically moringa and some asian spices). I also get fresh moringa pods and leaves at the farmer's market. You might be able to find them if you have any asian run markets in your area. (Moringa is the botanical name but a lot of south east asian people call it Maluunguy (spelling?)

Moringa is a big help on a keto plan because it adds minimal carbs but covers so many nutritional bases. It's got more vitamin A than carrots, more calcium than milk plus all of the essential amino acids and so much more.

For dinner tonight I had a big bowl of scrambled eggs with some goat cheese melted in plus a couple of handfuls of moringa leaves. Yumm. The leaves and pods have a slightly spicy flavor.

That is interesting about the Thai kids taking to the keto diet like little ketotic ducks to water. I wonder if it is because they are used to consuming a high amount of coconut products and therefor don't get the digestive upsets some people can get when they try to push too much coconut too fast.

 

[Blonde Angel]

Those of us who are the parents, do try damn hard to be advocates for their kids, it's a never ending battle of checking what works, trying something, adding reducing, eliminating, and thinking OMG what the hell??

My daughter had the Autism before she had the Epilepsy which began when she was 6ys of Age. Looking back on the journey, she always had bowel IBS issues, I honestly believe that this has exacerbated to the lead up to Epilepsy...it's only been the last 2 yrs I've really been quite serious in dietary control and I have noticed improvements in the seizure frequency.
It's about one a month now... Better than when she first started out ..

I would imagine that I'm not the only one with the love/hate relationship with meds, I know without doubt that Tegretol was nasty stuff for my girl which increased her seizures and made her very loopy on behaviours
I keep a record because, it's important to find those answers in this puzzle that we are all trying to work out, the answer can be the most simplest like avoiding peas and corn which exacerbate my girls IBS?.... The lack of sleep, illness, anxiety, stress that will definite trigger more seizures. Funny too that Strawberries made her get irritable and get a skin rash..so I avoid them..
Most of you are very fortunate that you can express your feelings in what's worked...be very very glad you have that benefit.
Some of us parents don't have that luxury....

Don't forget that medications will never cure the Epilepsy, but aim to hopefully decrease its severity..the question is...
What's right for you?

I am by no means a scientific person, but I do believe with research in what's applicable to ones own situation, the answers need to be worked out by you.. Sometimes the info is there but not always.
Sometimes research pees me because it does not always have the answers but further ??
Follow your heart and the head...they are both needed.
When one reads the big list of drug possible side effects, just remember it's about covering every possible ? Of liability.

 

[Jay1]

Disclaimer - The title of the link in this post is same as the title of the original paper or article. Please do not go by title alone as it may not accurately reflect the results of the research paper. It is important to read the complete article and then make your own judgment.



Summary of Dietary, Nutritional, and Medical Treatments for Autism – based on over 150 published research studies - Arizona State University

http://ariconference.com/enews/treatment.pdf


Seizure Treatments for Autism - Arizona State University

http://autism.asu.edu/Docs/2013/Seizure_Treatments-August_2013.pdf


N-acetylcysteine for treatment of autism, a case report

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3698662/


Epilepsy in young adults with autism: a prospective population-based follow-up study of 120 individuals diagnosed in childhood.

http://www.ncbi.nlm.nih.gov/pubmed/15946331


Ketogenic Diet Improves Core Symptoms of Autism in BTBR Mice

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0065021

 

[lnsiu]

Interesting with N-acetylcystein.

http://ncbi.nlm.nih.gov/pubmed/23719546

It seems NAC inhibits the secretion of inflammatory proteins after excersise, such as il1 and il6, and actually have an adverse effect on muscle performance and recovery.

Since I use excersise as my main treatment, I would not use NAC as a supplement.

This might also explain why NAC is seizure triggering in high doses - if NAC inhibits cell recovery and cell energy metabolism?

 

[Bidwell]

Blonde Angel, I just want to be sure you understand how admiring and touched I am by the deeply intelligent commitment you and the other parents who post here show in so many ways to the health of your children. Your thoughtfulness and care is wonderful and deeply moving to me.

So when I posted about how measuring makes me nervous -- it is true. My intention was to bowing out of Jay's invitation to be a part of his small survey. And I was speaking from my own situation and out of my own needs. Believe me, being part of a survey that involves any measuring would be counterproductive.

 

[KarenB]

Keppra and increased seizures (esp. in kids)

In this study of adults and children with intractible epilepsy, 20% of the children experienced improvement in seizures with Levetiracetam (Keppra).

However, a greater number of the children (43%) experienced an increase in seizures, and almost 10% of the children developed status epilepticus.

Seizure increase with Keppra with both the adults and children was most often seen in those with mental retardation, and during the first 2 months of treatment.

http://www.seizure-journal.com/article/S1059-1311(02)00172-3/abstract