Dietary changes and seizure control

How much coconut oil do you take every day?

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That makes sense, Karen. Maybe it's about intestinal inflammation known to be a factor in seizure (a few papers available). Maybe it's not so much metabolic as mechanical involving vagal nerves of the intestine. I hope your construct of reducing inflammation and possible infection gets your son back on the right track soon. Very interesting is how you've associated lowered glucose with reduced inflammation.

Aloha and seagull, here's a coconut cream product I think is excellent because it has no additives and it tastes great. Price is pretty good, too, for six (6) liters:
[ame="http://www.amazon.com/Aroy-D-Coconut-Cream-Fluid-Ounce/dp/B008ZWILNS/ref=sr_1_1?s=grocery&ie=UTF8&qid=1443910509&sr=1-1&keywords=aroy-d+coconut+cream"]Amazon.com : Aroy-D Pure Coconut Cream, 33.8 Fluid Ounce (Pack of 6) : Coconut Milk : Grocery & Gourmet Food@@AMEPARAM@@http://ecx.images-amazon.com/images/I/512%2BD8TLnaL.@@AMEPARAM@@512%2BD8TLnaL[/ame]

I've been fermenting it using some whey leftover from raw milk yogurt which I also emptied probiotc capsules into as starter culture. I've read coconut cream does have MCT fats and lauric acid like coconut oil, but much less than coconut oil.

And I've been adding a couple tablespoons of rice bran and maybe a banana for a great prebiotic treat packed with vitamins and minerals. I believe the coconut cream is especially high in potassium. The rice bran is dirt cheap here:
http://www.vitacost.com/bobs-red-mill-rice-bran

It's actually an agricultural waste product, but should perhaps be considered a superfood. It's prebiotic, raising Lactobacillus and Bifidobacteria. That may be the mechanism behind rice bran being protective. It's low glycemic and fairly low carb, gluten-free and high fiber. I've read it tops the list of foods highest in magnesium and even used to ferment vegetables in Japan:
http://www.tandfonline.com/doi/abs/10.3109/00365521.2010.513062?journalCode=igas20

And high in B6, cofactor in GAD enzymes converting glutamate to GABA: http://healthyeating.sfgate.com/health-benefits-stabilized-rice-bran-9601.html

This paper looks fantastic, too good to be true? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3338111/

fermented Japanese pickle:
https://www.youtube.com/watch?v=ZXacDTEo-jI
 
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That's the brand of coconut cream I use. It's great because it's just coconuts, no additives.

To make yoghurt with it, I use some stuff from a company called GI ProHealth that is called "GI ProStart". It is a starter culture made specifically for non-dairy milks.

I've got more bananas that I can possibly eat on my trees. I've actually been bartering them at the farmers market for other produce. But yes, coconut yogurt with a sliced banana and a handful of macadamia nuts is delicious.


Is rice bran soluble or insoluble fiber?
 
From what I can gather, rice bran has both soluble and insoluble fiber. This makes it good to lower cholesterol and triglycerides as well as help regulate blood sugar. A couple tablespoons in coconut cream with lots of grated ginger and maybe some fruit is quite good . . . 4 tablespoons daily could be a good thing.
 
With regard to glucose and inflammation -- that's one of the things we learned when at the hospital initiating the diet years ago -- if his glucose levels go up, that could be a sign he's getting sick. Jon's endocrinologist also said that high glucose levels can indicate infection or inflammation.

He had a mild small bowel ileus on his 2012 GI workup. I read yesterday that if there's not enough pancreatic enzymes (which can be a side-effect of certain meds, including AEDs and antibiotics), then the undigested food particles (esp. fat) can become rancid and produce toxins that can cause health issues throughout the body.

At any rate, he's now been on the enzymes for almost a week, and his glucose levels have been holding steady between 64 to 87 -- they haven't gone up into the 90's or 100's since his first dose. Ketones have been excellent as well.
 
Thanks for the insight, Karen. Recently, I learned about something called "benevolent diabetes" also known as starvational diabetes. My interpretation of this is when blood sugar rises and is beneficial, i.e., protective against hypoglycemia. The ketogenic diet (which mimics starvation) is found protective against hypoglycemia and I wonder if it's due to saturated fats causing insulin resistance:
http://www.ncbi.nlm.nih.gov/pubmed/720768

But it seems due to the low carb aspect of the diet, blood sugars stabilize over time on the ketogenic diet. Maybe it's because low carb shifts flora in the right direction, lowering things like Clostridia and Proteobacteria (gram-negative LPS-producers) which feed on simple sugars.

The infection factor may include LPS toxins from gram-negative bacteria binding with fats, especially triglycerides, to cause insulin resistance and high blood glucose. How do overgrown microbes in the small intestine affect the pancreas as mechanism of pancreatic enzyme deficiency? Lipase which digests fat is secreted from exocrine acinar cells:
http://gut.bmj.com/content/38/5/747.abstract
http://link.springer.com/article/10.1023/A:1005521007609
(these examples are about gram-negative bacteria, but there may also be examples where gram-positive bacteria like staph and clostridia as well as viruses affect lipase secretion.)
 
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It is very typical for children on the keto diet to have blood glucose between 60 to 80 -- at all times throughout the day. We are told in training that if the glucose goes up into the 90's or above, to be on the lookout for some sort of infection (unless, of course, the child recently had a seizure -- which can also raise glucose levels).

Diabetes is not a side effect of the diet. There have been several long-term studies of children on the diet (during and for years after the diet), and that has not been either a short term or long term side effect.
 
KarenB said:
Diabetes is not a side effect of the diet. There have been several long-term studies of children on the diet (during and for years after the diet), and that has not been either a short term or long term side effect.
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In adults it has often been known to cure diabetes. Even the less strict forms such as the MAD or glycemic index diet or even basic low carb paleo work.
 
Keith said:
Now I'm wondering if low blood sugar (but not too low!) is mechanism in halting growth of toxin-producing microbes which feed on simple sugars such as Proteobacteria and Clostridia.

The ketogenic diet is also found protective against hypoglycemia:
http://www.ncbi.nlm.nih.gov/pubmed/720768
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Yes, I think that "low but steady" is the ticket. Ketosis protects against the roller coaster effect.
 
AlohaBird said:
Yes, I think that "low but steady" is the ticket. Ketosis protects against the roller coaster effect.
Click to expand...

absolutely -- no spikes and crashes -- which I think it one critical way (among the 5 to 10 others mechanisms) that the diet works for seizures
 
Karen
I do wonder about your son's compliance?
Does the ketogenic diet require strict monitoring with blood testing? If so how often are you doing bloods.. do you try to do things in one hit to lessen the frequency in testing? I had a recent appointment with my girls Neuro and he isn't a believer in doing lots of blood tests due to levels that constantly change. He says unless there is specific symptoms he will get bloods tested.
In my case I asked him about the potential adverse affects of Calcium and Sodium levels affects with Trileptal use.
Having symptoms is the body warning all is not well. However when one has a child that's not verbal it poses challenges...
I think I'd rather give my girl the RDI of nutrients.

Do you do any hair analysis testing at all?
 
lnsiu said:
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?
Click to expand...

Thanks, I have been taking NAC hoping it would help a lung condition I have but I really think it is the aerobics and upper body weight trainging that helps my lungs.
 
Blonde Angel said:
Karen
I do wonder about your son's compliance?
Does the ketogenic diet require strict monitoring with blood testing? If so how often are you doing bloods.. do you try to do things in one hit to lessen the frequency in testing? I had a recent appointment with my girls Neuro and he isn't a believer in doing lots of blood tests due to levels that constantly change. He says unless there is specific symptoms he will get bloods tested.
In my case I asked him about the potential adverse affects of Calcium and Sodium levels affects with Trileptal use.
Having symptoms is the body warning all is not well. However when one has a child that's not verbal it poses challenges...
I think I'd rather give my girl the RDI of nutrients.

Do you do any hair analysis testing at all?
Click to expand...
I may have asked before (bad memory) what type(s) of seizures does your daughter have. A couple times we thought my GS had a absent seizure but as you say, when someone is nonverbal it's hard to tell what is going on.
 
MAB said:
I may have asked before (bad memory) what type(s) of seizures does your daughter have. A couple times we thought my GS had a absent seizure but as you say, when someone is nonverbal it's hard to tell what is going on.
Click to expand...


Hi MAB
my girl has the Complex partials which she loses awareness and stares blankly, but at times it does progress to generalized seizure activity.

A really bad one can be over 3-4 minutes and Í have got to have the Midazolam ready if it goes beyond the 5 minutes. Fortunately I have never had to use it.

There is times she only seems to have a minor transient "vague out"" which lasts only a few secs. Staring intently at something but when I call her name she is aware and gives me eye contact sometimes.

Yes, its hard to tell when someone is non verbal as they cant express their feelings easily . One thought I have is can your GS be interrupted while you think he may be absent? Perhaps try to call his name during this episode and see if he does give you eye contact? If he is giving eye contact he is aware of his surroundings.
When its the Absence type seizure the person just stares but is alert... with Complex partials like my girl she is confused post seizure.

I keep a seizure record and I aim to describe, the situation.
Any little thing can mean lot in working things out.
 
Blonde Angel said:
Karen
I do wonder about your son's compliance?
He only eats what we give him. He pretty much has an adult 1:1 with him, so his compliance is pretty good. He DID sneak a banana several weeks ago...with dire effects!

Does the ketogenic diet require strict monitoring with blood testing?
Good neurologists/dieticians will run labs about every 3 months or so -- checking stuff like acidosis, calcium levels, etc.

If so how often are you doing bloods.. do you try to do things in one hit to lessen the frequency in testing?
every 3 months, unless something seems "off." We do finger sticks at home to check ketones and glucose levels - but only when making changes to diet or if he's sick or having a lot of seizures
I had a recent appointment with my girls Neuro and he isn't a believer in doing lots of blood tests due to levels that constantly change. He says unless there is specific symptoms he will get bloods tested.some issues - like acidosis - are not clearly symptomatic until the child is in extreme danger. Even mild acidosis can cause bone thinning and kidney issues. We would not know JOn's calcium levels, D3, etc. were low and needed supplementation without labs being run regularly

Do you do any hair analysis testing at all?no -- what would be the reason for hair analysis?
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:hugs:

I hasten to add that the 3 month schedule for labs is primarily for children on the Ketogenic diet. Otherwise, it would depend on AEDs, etc. And yes, all Jon's specialists simply put their order in, and then when the 3 month time comes, they all get done at once
 
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Blonde Angel said:
Hi MAB
my girl has the Complex partials which she loses awareness and stares blankly, but at times it does progress to generalized seizure activity.

A really bad one can be over 3-4 minutes and Í have got to have the Midazolam ready if it goes beyond the 5 minutes. Fortunately I have never had to use it.

There is times she only seems to have a minor transient "vague out"" which lasts only a few secs. Staring intently at something but when I call her name she is aware and gives me eye contact sometimes.

Yes, its hard to tell when someone is non verbal as they cant express their feelings easily . One thought I have is can your GS be interrupted while you think he may be absent? Perhaps try to call his name during this episode and see if he does give you eye contact? If he is giving eye contact he is aware of his surroundings.
When its the Absence type seizure the person just stares but is alert... with Complex partials like my girl she is confused post seizure.

I keep a seizure record and I aim to describe, the situation.
Any little thing can mean lot in working things out.
Click to expand...

With Orion it is hard to tell. He seldom responds to his name even though he knows what his name is. He can spell. He also doesn't give a lot of eye contact but that is getting better.
 
Just wanted to give an update on Jon and what we're doing differently with diet.

He had a relapse of seizures in August, beginning with a severe tonic-clonic that lasted almost 5 minutes (following a severe illness). About a month later he started having gelastic seizures, and these would last hours. One night he woke up at midnight with giggling fits, and this continued for the rest of the night -- he couldn't sleep (finally had to give him Diazepam to put him to sleep, but when he woke up about 6 hours later he went right back into the giggling seizure). They didn't stop until late the following afternoon. Heart rate elevated (120 to 150) the whole time. At this point, his docs raised his Zonegran up to 75 g/day.

Testing revealed his ketones were low (even though no changes to diet up til then). Apparently puberty and/or gut inflammation following antibiotic treatment (for the illness) were affecting this. So, we increased his ratio on the ketogenic diet and increased his MCT oil up to 10g/meal, which brought his ketones into the 4-6 range desired. (also finally increased Zonegran up to 100 g/day -- this finally stopped the tonic-clonics and gelastics.)

That left us with some partial seizures -- some occasional absence seizures in the daytime and this nocturnal seizure where he will scream out or groan (like he does right before a tonic-clonic), but by time we dash into his room, it's over (or he's doing this chewing motion). I guess the seizure is starting, but the Zonegran is keeping it from generalizing into a tonic-clonic (Zonegran is good at this).

So we added in turmeric (and after a month or so, I learned turmeric works better with black pepper and fat, so now we mix the turmeric and black pepper in with a spoon of mayo, and he gets that every day - 1 gram turmeric). The turmeric helps to raise his ketones (maybe less gut inflammation so better absorbtion?) And it did seem to decrease seizures, although we were doing several things at one time.

We tried bumping up the Zonegran even more to stop the partial seizures, but it didn't work -- in fact, they seemed to get worse. So, I added in fresh ginger. Prior to adding in the ginger, he was having 1 or more of these nocturnal partial seizures every night. We started out with 1 gram ginger a day (baked into his pumpkin/flaxseed muffin) and that reduced his seizures down to an average of 4 every 10 days. I then increased the ginger up to 2 grams a day, and that decreased the seizures to 2 every 10 days, so 50% reduction. I then increased the ginger up to 3 g/day, and he hasn't had any since that increase, but it's only been 2 days. The nocturnal seizures are the only ones he's had since we bumped ginger up to 2 grams a day.

study on ginger and epilepsy: http://www.ncbi.nlm.nih.gov/pubmed/24529324
 
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Great to hear that the fresh ginger is helping! I hope it continues to do so.
 
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