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  #41  
Old 10-06-2012, 07:35 PM
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I'd be careful with oil of oregano.

Quote :
1. Is oil of oregano absorbed? Some parts of the oregano do appear to be absorbed but the bioavailability of its different chemical constituents has not been verified. So we can’t be certain which components are reaching the circulation.

2. Does enough reach the right part of the body to have any beneficial effect?
It’s not clear where the chemicals in oil of oregano act in the body, as no research has been done to show that it is adequately absorbed. However, there is some evidence to suggest that oregano may be implicated in inducing abortions in mice, so some parts of the herb must be absorbed, if this a causal effect. When applied to body surfaces or skin for topical effect, oil of oregano is more likely to reach high concentrations, at least locally, and then possibly deliver a medicinal effect. This makes topical effects seem much more plausible than ones that require ingestion.

3. Does it actually work for the condition? There is no published evidence to demonstrate that that oil of oregano is effective for any medical condition or illness. The McCormick review notes that that data for every condition evaluated is “preliminary, inconclusive.” There is some very limited evidence to suggest that it might be useful for parasite infections — but given the evidence consists of only one study with 14 patients, and no placebo comparison, we really have no idea if the oregano oil itself was effective.

Let’s consider how oil of oregano might treat an infection. Bacteria are killed by antimicrobials based on a specific dose-response relationship. The minimum inhibitory concentration (MIC) must be reached at the site of an infection. Then there’s a concentration range where the bacteria (or viruses, or fungi, or parasites, depending on what you’re treating) are killed, typically in rough proportion to the dose. Keep increasing the dose, and the effect plateaus. If you can hit the MIC without causing side effects or toxicity, congratulations: you have a potential therapeutic agent.

There’s some evidence out there demonstrating that oil of oregano will kill different species of bacteria, etc in the test tube or Petri dish ( in vitro). If I pour a pile of salt, lime juice, Cointreau, or tequila on a Petri dish, it will likely kill most bacteria too — but that doesn’t mean margaritas can treat pneumonia. It’s not difficult to kill bacteria if you change the conditions enough that it cannot live. So while it’s easy to get high concentrations of oregano in a test tube and subsequent positive effects, these effects are meaningless in the human body unless we can achieve similar concentrations, without any toxicity. And this has not been demonstrated with oil of oregano, or its individual chemical ingredients.

4. Does oil of oregano have any hazardous, unwanted effects? Natural does not mean safe. There are some reports of gastrointestinal upset with oil of oregano. There are also reports of allergic reactions. There is no evidence to suggest that oil of oregano, used at high (medicinal) amounts, may be used safely in pregnant or breast feeding women. However, when used in cooking, and as part of a regular diet, there is also no evidence that causes harm in pregnancy or breastfeeding. Animal studies show that if you give enough carvacrol, it will kill, though.

5. Can oil of oregano be safely eliminated from the body? So little published research exists on oil of oregano there is no way to determine if oregano oil is non-toxic. Certainly, at low doses, when used as a food, there is no reason to have any concerns. But at higher doses, and particularly with regular use, there is no data to sugges it’s safe to consume all that carvacrol, thymol, cymene, and terpinine. As we have no idea if and how oregano oil works, we have no information to estimate what a proper dose might be. Doses published by manufacturers are not based on any published evidence.

Conclusion


Oil of oregano, and the claims attached to it, is a great example of how interesting laboratory findings can be wildly exaggerated to imply meaningful effects in humans. A few small studies have been conducted, mainly in the lab, and advocates argue this is evidence of effectiveness. The rest is all anecdotes.

Despite the hype, there is no persuasive evidence to demonstrate that oil of oregano does anything useful in or on our bodies. And while it is popular, there is no science to support the use of oil of oregano for any medical condition. Suggesting that this herb is can effectively treat serious medical conditions like diabetes, asthma, and cancer is foolish and dangerous. If you’re ill, stick to the proven science, and save your oregano for cooking.
http://www.sciencebasedmedicine.org/...il-of-oregano/
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"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason

Last edited by epileric; 10-06-2012 at 09:35 PM.
  #42  
Old 10-06-2012, 09:18 PM
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Epileric, I totally get what you're saying. "Natural" doesn't necessarily mean safe.

But the problem with sticking to "proven science" is that there are really so few studies out there on the more natural approaches. It is very possible that they may be just as efficacious as anti-epileptic drugs, without as many of the toxic side effects, but since at least 70% of epilepsy research is funded by the drug companies, their focus is going to be on developing anti-epileptic drugs with a huge profit, not on testing the efficacy of something like the neuroprotective elements of...say...turmeric...which can be bought for pennies.

I'm not one to try something without studies indicating that it might possibly work, and certainly would want to know if something is safe. But I just wish there were more studies out there on herbal approaches and that sort of thing. I'm just so weary of my little boy having horrific side effects from anti-epileptic drugs that provide little or no efficacy. China and India (and even here in Thailand) are doing some studies, but they don't get published (or recognized) as much -- often because, in the case of the Chinese researchers, they may not have enough English ability to write up a report in English to be published by international journals.
  #43  
Old 10-07-2012, 01:08 AM
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Caution is definitely advised regarding use of oregano oil, especially the more potent brands. On an empty stomach in the morning it caused seizure rapidly in my dog. I've tried it myself in water and it's extremely powerful. Mechanism for seizure of gut origin may be abdominal irritation and nerves in the intestinal lining or intestinal bacteria releasing toxins instantly affecting the brain. The latter theory was espoused by Dr. Archie Kalokerinos where vaccination causes bacterial toxin release affecting the brain.

It's also said to begin probiotics very slowly as they can also initiate seizure; I've seen it happen several times. Dr. Natasha Campbell-McBride also suggests beginning probiotics very slowly. Karen, are you familiar with her GAPS diet?

anti-epileptic drugs are designed to work from the neck up in disregard of gut origin of seizure, but I believe barbaric phenobarbital may actually be effective because of how it shifts gut flora, not how it acts in the brain. And it only works 50% of the time, if that, then more drugs are added risking liver damage and seizure may still not be controlled. Donnatal is a drug containing phenobarbital and belladonna used to treat ulcerative gut conditions.

I firmly believe neurology, in all its wisdom, is frequently missing the target, treating seizure from the neck up.
  #44  
Old 10-08-2012, 08:46 PM
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Jonathan is pretty much on the GAPS diet anyway, by virtue of being on the Ketogenic diet. I looked at the "foods to avoid" -- and Jon doesn't get any of those, because they are either prohibited on the Keto diet, or because of my own philosophy of eliminating processed foods and long-chain triglycerides.

We started the probiotic at 1/3 the recommended amount, and he's now at 2/3. It didn't increase his seizures -- in fact, they've been decreasing, but not sure if it's the probiotics or the Diazepam tweak (see below).

I've recalculated Jon's meals to include either ginger or garlic or turmeric with every meal, but am waiting a few days to implement it (except for 1/8 tsp of turmeric in his morning omelet) because I'm trying a little experiment with Jon's Diazepam, and I want to wait a few days more to see how it works before tweaking the diet.

Diazepam (Valium) is meant to be a sedative, but in Jon, it has the opposite effect -- making him hyper, gives him insomnia and hallucinations, and makes him agitated and aggressive (pinching, hitting) and self-harms (banging his head on wall, sticking fingers in fan, grabbing his skin and pinching himself). Anyway, the doc had advised bumping him down from 5 mg to 4 a few weeks ago, and that alleviated some of the symptoms, but not all (and the reduction did not increase seizures). So, last week, we bumped him down to 3.75, and yesterday down to 3.5, and have seen a 62% reduction in seizures. He's been on the Diazepam for about 6 weeks now, and the body grows tolerant of it quickly, so apparently any beneficial effect it was having on seizures (which is dubious) has worn off, and apparently is even causing seizures. So, the plan (if this continues to work), is to gradually reduce his Diazepam every 2 weeks, and on the in-between week, we'll work on tweaking his diet to treat gut issues.

We know he has gut issues (chronic diarrhea) -- what we don't know is whether they are related to the seizures (my gut tells me they are -- )
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  #45  
Old 10-08-2012, 10:52 PM
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Karen, I mentioned gelatin earlier, but didn't give much info. It's the best mechanical gut conditioner I know of among many. It's a pretty well known remedy for diarrhea. In therapeutic dose of about a tablespoon of pure beef gelatin and as many as 4 doses/day it can really help absorb toxins and calm inflammation. It's also packed with protein and important amino acids for brain function including glycine and alanine in high amounts. Alanine is a building block of carnosine which is known to calm kindling in amygdalas. Here's the kind I've used with my dog to great effect, halting what would have been horrific 2-3 day clusters to one seizure (also using zinc-carnosine, french green clay sometimes and most recently Rifaximin and propolis, but I attribute most success to gelatin in halting clusters). http://greatlakesgelatin.com/storefr...f-gelatin.html

Gelatin is not a cure for gut dysbiosis, but it does an amazing job coating intestines and, I believe, absorbing toxins. Making bone broth is another good thing, but not as therapeutic as tablespoon doses. Gelatin is probably the reason chicken soup is considered Jewish medicine. But high fat in some soup could be a problem as fat malabsorption may be an underlying cause of gut symptoms. http://suite101.com/article/most-cel...rption-a233784

A couple antimicrobials I've been learning about are yellow root tea and iboga root powder which is what the controversial drug Ibogaine is made from . . . just learned about it the other day; fascinating stories behind it, but potentially dangerous. Yellow root is used for treatment of diarrhea where the active ingredient is berberine and may be worth considering. I don't have any experience with it, but a friend said it cured his ulcerative colitis. If gram-negative bacteria are the problem, then it's said berberine is weak. Science is trying to find new antibiotics and efflux pump inhibitors (to stop toxins) in defense of gram-negative bacterial overgrowth where antibiotic resistance is a huge issue. Coptis root extract is also high in berberine and is good for diarrhea and constipation. Many people alternate between constipation and diarrhea, as did my dog. It's a common cycle in gut dysbiosis.

Purines are said to be an important part of the ketogenic diet in stopping seizure. Beef liver is high in purines and is promoted heavily by Natasha Campbell-McBride in the GAPS diet, sauteed in butter. But too much liver can cause problems, I believe, due to fat content. http://nourishedandnurtured.blogspot...gal-grain.html

Last edited by Keith; 10-08-2012 at 11:37 PM.
  #46  
Old 10-09-2012, 03:40 AM
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I looked at the supermarket today, and the only gelatin available has sugar in it (they also use agar here -- I think that's made from a plant). I think I'll have to get some bones and make my own. He had some wonderful bone soup at our Chinese friends the other day -- they cook those bones all day, and then put ginger and other goodies in.
****

Speaking of a moth to the flame -- he had a great seizure free night, and then we headed off to the mall for lunch and a little shopping, and he was doing great -- trotting down the mall and enjoying himself, when all of a sudden, he stopped dead in his tracks, and turned around and stared at this bright light that was over the milk tea kiosk -- he just fixated on that and then had a seizure right there in the middle of the mall.
  #47  
Old 10-09-2012, 04:38 AM
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Re: Purine
The Ketogenic diet increases ATP, a type of purine. A core element of ATP is adenosine, which acts directly on neurons to inhibit excitability, and also are neuroprotective and anticonvulsant. There's lots of theories and research as to why, exactly, the ketogenic diet works, and the most recent research is pointing to the enhanced purines.
http://www.ncbi.nlm.nih.gov/pubmed/21880467


Everytime I start to get discouraged or weary of the Ketogenic diet, I come across this sort of research.
  #48  
Old 10-09-2012, 05:02 AM
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High purine foods:
organ meats (kidney, liver), fish (mackerel, sardines, etc.), yeast
Moderately high foods: boullion, asparagus, cauliflower, chicken, duck, kidney beans, mushrooms, shellfish, spinach, etc.

Purine is metabolized into uric acid, which is an antioxidant. However, too much uric acid can lead to gout, kidney stones (and I think acidosis?) Kidney stones and acidosis are potential side effects of the Ketogenic diet, so many centers prescribe a buffer (like baking soda or cytric acid/potassium). Apparently, purine from dairy and vegetable sources doesn't cause gout to the extent that meat and fish do.

http://whfoods.org/genpage.php?tname=george&dbid=51
  #49  
Old 10-09-2012, 11:36 AM
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Great info, Karen. What a rough mall experience for you both. There must be a way to buy pure gelatin, even products like Knox in small packets, expensive compared to bulk. But making your own with bones is a good thing. It's possible to make more than one batch with the same bones, especially using beef feet (ick, I know). I'm not sure how homemade gelatin compares to powder. See here:

I've said this before, but don't mind saying it again: I believe the reason the ketogenic diet is effective is due to shifting flora, actually lowering (not raising) ketones via removal of starch and carbs which feed microbial imbalance. It's not about addition of fat and protein. Over time, the diet lowers ketones such as acetone while still providing protection from seizure.

Acidosis is one of the common denominators for all disease. Maybe the best natural remedy is dark, leafy greens. They also include a lot of phytochemicals important for homeostasis. I think raw is best. Cruciferous vegetables like broccoli and red cabbage are also great. High acid bodies mean low oxygen, a recipe for seizure.

Last edited by Keith; 10-09-2012 at 11:46 AM.
  #50  
Old 10-09-2012, 12:41 PM
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Originally Posted by KarenB View Post:
Re: Purine
The Ketogenic diet increases ATP, a type of purine. A core element of ATP is adenosine, which acts directly on neurons to inhibit excitability, and also are neuroprotective and anticonvulsant. There's lots of theories and research as to why, exactly, the ketogenic diet works, and the most recent research is pointing to the enhanced purines.
http://www.ncbi.nlm.nih.gov/pubmed/21880467
Seems there's a catch-22 regarding purines considering gut dysbiosis (imbalance/overgrowth) as microbes also make purines, it's hardly just about diet. They make it (biosynthesis) because they need it to grow where overgrowth leads to acidosis. The pathway is being targeted in drug therapy.
http://www.plospathogens.org/article...l.ppat.0040037

Some archaea can't make their own purine:
http://www.biology-direct.com/content/6/1/63

Purines apparently enhance toxin production in bacteria:
http://www.ncbi.nlm.nih.gov/pubmed/11800470

Once I gave my dog a piece of beef liver I thought she could handle and it caused seizure. I'm not sure if it was fat malabsorption, intestinal irritation due to raised gastric acid needed for digestion (most likely) or purines causing toxin release. But it was too much liver. She commonly had seizures soon after eating and even during meals. My poor girl, she was so sweet and taught me so much. Her beautiful spirit never waned.
  #51  
Old 10-09-2012, 09:10 PM
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So sorry about your dog -- it's so hard to lose a beloved pet. The liver is the detox center of the body, so animal liver could potentially carry toxins, depending on the diet of the animal and what sort of antibiotics, growth hormones, and other crap was getting pumped into the animal.

The ketogenic diet DOES raise ketones, and usually higher ketones and lower blood sugar levels go hand in hand with seizure control. However, sometimes if the ketones get TOO high, that can cause seizures as well. We experienced that a couple weeks ago -- I suspect Jon was going into acidosis (his bicarbonate levels were low a few days before). Certain anti-epileptic drugs like Zonegran (which Jon is currently on) and Topamax can also cause acidosis and kidney stones, so we have to tread very carefully having Jon on both the diet and Zonegran at the same time (I'm not especially fond of Zonegran, but then again, I hate most anti-epileptic drugs -- especially since they don't do much for Jonathan other than cause horrific side effects).

One interesting phenomena we have observed is that even though Jon has had good ketosis since March (when he had the gastrointestinal bug and then lost seizure control), his blood sugar has been higher than usual. Keto kids usually have blood glucose levels in the 60s and 70s, and his have consistently been in the 80's and 90's. Usually, those of us in "Keto world" attribute high ketones AND high glucose levels to underlying infection -- in fact, a high glucose reading is warning that a child is getting sick, even before the child begins to exhibit symptoms of a cold or whatever. However, aside from a couple colds, Jon has not been obviously ill since March (except for the bouts of diarrhea about 3 or 4 times a week). To me, this is indication of some sort of underlying illness.

For children, the fat is important for keeping the calories high enough for children to grow, since eliminating most carbs cuts the calories dramatically. But I think there's also beneficial aspects to the fat to the brain -- especially in very young children, but apparently also in older kids and adults (in our case, we try to use the healthiest fats available -- MCT oil (from coconut oil), olive oil, fish oil, avocados, flaxseed, etc. Protein is NOT increased in the Ketogenic diet for seizures -- kids are kept on "adequate" protein, which is often less than what they were eating before. If they consume more protein than their body uses, it is converted into glucose.
  #52  
Old 10-09-2012, 09:29 PM
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http://www.mynchen.demon.co.uk/Ketog...ats.htm#Butter and margarine and other fats

This goes into a rather complicated explanation of different sorts of fats, and how fats work in the Ketogenic diet, and which ones are the best to use.
  #53  
Old 10-09-2012, 09:40 PM
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Getting back to the topic of this thread -- this sensitivity to lights seems to be a new thing for Jonathan -- in the last couple months. Previously, most of his seizures were at night, where light wouldn't be an issue. But when they would use the strobe lights in an EEG, they never induced seizure activity.

We did notice a couple years ago that bright lights tended to increase autistic tendencies in Jon -- for instance, going to Walmart could generate a lot of agitation. And sometimes, a lot of agitation could eventually lead to a seizure.

But now, we're seeing an immediate reaction between bright lights and a seizure. Last night, there was a lightening storm, and this brought on a seizure. And watching TV or the computer screen can bring on a seizure. It's not just sunlight -- any bright light will do it.
  #54  
Old 10-09-2012, 10:37 PM
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It's really a heartwarming honor speaking with you, Karen. I'm hardly expert in KD.

It's generally believed increased ketones are protective, but the opposite may be the real truth. Here's a study showing KD over time produces an inverse relationship: "Children who were on the ketogenic diet for longer periods of time had a significantly lower fasting breath acetone."
http://www.nature.com/pr/journal/v52...r2002204a.html

In 2002, study authors had no clear explanation for this "significant inverse association" because they weren't factoring-in the well-known reason: microbes make acetone.

The history of industrial acetone manufacturing during World War I may be very instructive. Acetone was produced using acetone-butanol-ethanol fermentation with Clostridium acetobutylicum bacteria, which was developed by Chaim Weizmann (later the first president of Israel). Royalties to Weizmann from the Indiana corn fermentation plant apparently funded his first Presidential election in 1949.

Here we are back to clostridium bacteria, known to be high in autism. Surely, it's not so simple, but the fact is starches feed some types of bacteria (which is why I believe the starchy gluten-free "Celiac industry" is actually feeding the problem. The SCD or Low Starch diets seem far more appropriate in gut dysbiosis). Beware the innocent potato. Shun pasta. Actually, bleached flour was made illegal in the USA in 1918 by the Supreme Court, but not enforced; it's now banned in Europe.
http://archive.boulderweekly.com/081403/hygeia4.html

Acetone, a basic ketone, is not thought to be so toxic, yet it may be responsible for lowering seizure threshold. Perhaps when starved clostridium are busy trying to survive leading to temporary increased ketones such as acetone, they aren't in toxin-producing mode where clostridium toxins are a known cause of seizure. There's also a factor of other types of bacteria (gram-negative sulfate-reducing?) oxidizing butyrate produced by clostridium, perhaps too much.

Here's a nice article about bacterial fermentation history:
http://www.accessexcellence.org/LC/S...background.php

Bernard added this in another thread:
Researchers for the Modified Atkins Diet called into question the long standing belief that ketosis was responsible for seizure control:
Quote :
This study raises important questions on the current use of the traditional ketogenic diet. The first is whether higher ratios with more fat, less protein, and fewer carbohydrates are truly necessary for efficacy. Our results also question whether ketosis is as important as previously reported (10,12). Eighty percent of children with a loss of large urinary ketosis over the study period did not lose seizure control, and the same percentage with trace or zero ketosis at 6 months were still improved. Preliminary efficacy of a low–glycemic index diet with lower levels of ketosis also suggests this may be accurate (13).
http://www.coping-with-epilepsy.com/...ed-atkins-diet
  #55  
Old 10-09-2012, 10:40 PM
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Regarding high glucose, I wonder if that's connected to fructose malabsorption seen in irritable bowel syndrome (IBS). I wonder if your son would be diagnosed with IBS-D, the diarrhea form of spastic colon. I'm only beginning to research fructose malabsorption: http://www.tandfonline.com/doi/full/...98.2011.566646
(The study states glucose consumption actually attenuates fructose malabsorption, so I wonder if eating beets would help. I'd have to research it much more to understand.)

And back to light, as I've described earlier, my theory is the gut-eye connection where excess histamine (or something) of gut origin causes inflammation of the optic nerve (optic neuritis, similar to diabetic retinopathy) and maybe even hypothalamic inflammation, all of which may be altering H3 histamine receptors relevant to pleasure, hence self-induced Sunflower Syndrome. There's also the factor of endotoxin produced by gram-negative bacteria causing leptin resistance which affects H3 histamine receptor regulation. Finally, high blood sugar in diabetes is associated with blood-brain barrier permeability, perhaps lowering seizure threshold:
http://www.ncbi.nlm.nih.gov/pubmed/18673200
http://jnnp.bmj.com/content/74/1/70.full

I know sugar from a drug called lactulose we were testing to see if it helped with constipation and potential liver problems (Hepatic encephalopathy) sent our dog into the worst spin I've ever seen, not a seizure, but something stranger; maybe diabetic shock. That was the last time I ever gave her lactulose, obviously the wrong remedy for her gut problem. Her reaction to lactulose was way out of the ordinary, completely unexpected. That and seizure in close proximity to meals made me think it was an insulin reaction called reactive hypoglycemia where high blood sugar is suddenly driven very low, a dangerous situation associated with seizure. Reactive hypoglycemia is often misdiagnosed in people as schizophrenia.

Last edited by Keith; 10-09-2012 at 11:10 PM.
  #56  
Old 10-10-2012, 08:07 PM
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I wouldn't be surprised if he has something like Irritable Bowel Syndrome. I was diagnosed with that 24 years ago, just after birth of first child. However, after about 5 months on a low fat diet and getting very lean, it just...went away. I suspect I was misdiagnosed, and that it was a gallbladder issue. Haven't had any problems since, unless I have more than one slice of cheesecake or serving of (real) icecream. Seems to have something to do with milkfat.

Anyway, beets are too high in sugar & carbs for Jon to be able to eat enough to be beneficial while on the Keto diet. I don't think it's likely to be fructose malabsorbtion (although it could easily be some sort of malabsorbtion) because he doesn't consume much fructose. The only fruit he eats right now is star fruit, which is low in sugar. He used to eat a lot of the berries (strawberries, raspberries, blackberries), but these are not grown locally here. And the veggies he consumes aren't high in sugars either.

Regarding Ketone levels, my personal experience is that they are important, but perhaps not as important as glucose levels, and perhaps other factors. When kids are started on the Ketogenic diet (in the hospital), all the levels are monitored several times daily. Even though they go into Ketosis within a day or two, and blood sugars drop, seizure freedom (or increased control) may or may not be immediate. More often than not, it takes weeks or even months to see an improvement (and during this period, a lot of parents give up). It took Jonathan 6 weeks before seizure freedom, and things actually got quite worse before they got better (and this is also common). This indicates that there's something more going on -- that the diet is somehow affecting brain chemistry (purines?) or even gut issues or who knows what else.

Furthermore, in Jon's experience, his diet has not changed significantly, and he has maintained good ketosis, but ever since that #@$& stomach virus about 6 months ago, he has lost seizure control. It could just be that his epilepsy is progressive, and that it just coincidently happened to get worse right about the same time that he had the virus. But...he had a healthy gut for the 11 months prior to the viral infection (no diarrhea), which corresponded to seizure freedom, and hasn't had either since the virus.

Interesting that you mentioned a possible hypothalamic connection. We are suspecting a possible hypothalamic harmatoma -- he has occasional gelastic seizures (which became very significant last Spring after losing seizure control) and early puberty (even though he only weighs 45 pounds on a good day). His 2010 MRI didn't show it, but apparently there's a specific protocol that has to be followed with an MRI to detect HH -- it's hard to find, being so deep in the brain.

We didn't get to see our Neurologist this week (he was in ICU with a child in crisis), so appointment was moved to next week, but planning to discuss another MRI.
  #57  
Old 10-10-2012, 08:42 PM
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It's pretty obvious I'm in over my head. If you're dealing with a chronic virus, maybe consider some of the natural antivirals like silica and thuja, known to work with vaccine reactions. Zinc is also good, maybe zinc picolinate for systemic bioavailability (using it for a couple months balances copper toxicity which allows copper to do its job). Also, wild oregano oil is supposed to be antiviral; video here explaining protocol and use with a child: http://blog.listentoyourgut.com/wild...for-swine-flu/

And probiotics may be a very good thing tested with caution, especially something like homemade kefir.

From Palm Beach County, Florida, USA With Love
  #58  
Old 10-12-2012, 12:01 AM
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Well, he shed the virus by the 6th day of his illness. He got sick first (probably caught the bug at school), and was vomiting every 20 minutes and also diarrhea, and then about 3 days later, my husband and I both got sick, and then a couple days later, we were fine, but he was still ill, so ended up in the hospital, because by this time he'd lost 5 pounds. He'd stopped vomiting, but still had diarrhea. They tested him for rotovirus and all the usual tummy bugs, but he was negative for everything, but, of course by that time it had been about a week. So, they rehydrated him and sent him home. He'd apparently recovered from the initial virus, but his bowels were badly inflammed from the illness, and the high fat Ketogenic diet was aggravating the situation.

So...he eventually recovered, sort of, but never really completely. His nutritionist lowered his ratio (less fat) to help him recover, but that's when he started having seizures.

So...at any rate, it's not the original virus -- it's either that the illness disrupted the balance of bacteria in his gut, or his has some sort of chronic inflammation.
*****
Another light-sensitive seizure yesterday -- we were over at the university, waiting for my husband to wrap some things up, and wandered over to the lake, and the light reflecting off the water sent him into a seizure.
  #59  
Old 10-12-2012, 01:19 PM
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Have you considered supplementing with selenium? This is one of the only supplements I've been using myself, the organic, less toxic, supposedly more effective type, se-methyl-selenocysteine:
http://www.vitacost.com/life-extensi...selenocysteine

Selenium has lots of anti-inflammatory function as it's the root of glutathione and some SOD enzymes, the body's "master antioxidant."

It's also required to convert thyroid hormones.

And I've just learned it's an insulin mimic:
http://www.ncbi.nlm.nih.gov/pubmed/11215514

Recently, I learned it's best taken at bedtime; I've tried that and agree.

Selenium deficiency
may be caused by yeast overgrowth (illustrated by large amounts in brewer's/nutritional yeast which is a tasty prebiotic made from dead cell walls of yeast, a controversial food for many, but it also has function absorbing toxins, has tons of B vitamins and fiber.)

Counterintuitively, this study shows high serum selenium levels in diabetes:
http://care.diabetesjournals.org/content/30/4/829.full
I wonder if the mechanism is due to malabsorption of selenium where toxicity and deficiency are the same thing as in copper toxicity.

Here's a very interesting study about selenium deficiency and seizure:
http://www.fasebj.org/content/17/1/112.full

NAC is another supplement raising glutathione levels and reducing inflammation in the brain and body. It's actually being tested in soldiers suffering closed-head injury from roadside IED bombs, the signature war wound in Iraq and Afghanistan where soldiers are damaged from shock waves being in close proximity to explosions. It's possible NAC is best taken with selenium, though I haven't researched it much.

I'm also a fan of boron and liquid molybdenum as anti-inflammatory, vitamin D regulating and enzyme-activating.

Now here's a connection of selenium deficiency to photosensitive seizure, deficiency in the aqueous humor of the eye:
http://www.ncbi.nlm.nih.gov/pubmed/8646578

This selenium deficiency in the aqueous humor may be a cause of pressure/compression on the optic nerve in glaucoma leading to blindness.
http://www.ncbi.nlm.nih.gov/pubmed/14700645

Selenium levels associated with glaucoma:
http://bjo.bmj.com/content/93/9/1155.short
http://bjo.bmj.com/content/93/9/1132.extract

Seizure is associated with glaucoma in children:
http://www.ncbi.nlm.nih.gov/pubmed/7769179

Note: beta-blocker drugs can reduce aqueous humor produced in the eye.

Selenium deficiency and cataracts:
http://www.ncbi.nlm.nih.gov/pubmed/8646578

Nice quote here:
""The Eye produces a Fluid called aqueous humor, which fills the eye's interior. In glaucoma, aqueous humor is produced faster than it can drain into the capillaries within the Eye. The resulting increase in pressure damages both the capillaries and the nerve endings that carry vision impulses to the optic nerve . . . "
http://www.naturalpedia.com/aqueous_humor.html

So, between excess histamine of gut origin and selenium deficiency due to malabsoprtion in the small intestine, there are many connections to photosensitive seizure.

Last edited by Keith; 10-12-2012 at 02:38 PM.
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  #60  
Old 10-12-2012, 09:33 PM
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Yes, he's already on Selenium, 48 mg/day. He's not getting NAC -- will look into that a bit more.

Medication controls his tonic/clonic seizures (Grand Mal) but don't put a dent into the tonic seizures. Interestingly enough, we see that various supplements seem to help more with the tonics than the meds. For instance, this week I reduced his omega 3 fish oil capsules to alternating days, because they act as a blood thinner (as does the Zonegran he's on), and we were starting to see a lot of bruises. However, this week, on the days he got the fish oil, he only had one seizure, on the days he didn't, he had 3 to 4 seizures. That might just be coincidence -- we're going to give it a few days more to see if this trend continues. If it does, we'll give him the fish oil every day.

Today, he's started on the ginger/garlic/turmeric regime with every meal. The main idea is to promote gut health and overall health, but turmeric may also have some anti-convulsive properties. So...we'll see how that goes. I also temporarily removed flaxseed meal from his diet -- it's got wonderful stuff in it -- but it's also a laxative, so will hold off on it until we get his gut issues addressed.

My idea is that since the drugs aren't helping with the daily tonics, but ARE causing significant side effects, to do a very slow gradual wean to the point where they keep the grand mal seizures under control, but with fewer side effects -- go as low as we can. And in the meantime, will keep tweaking his diet and supplements and gut health to address the tonics.
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