[Ketogenic] Ketogenic diet diary +

Ketogenic diet - select as many as you want

  • don't know anything about it

    Votes: 0 0.0%
  • heard about it, sounds crazy

    Votes: 0 0.0%
  • properly tried it, didn't work medically (please post)

    Votes: 0 0.0%
  • properly tried it, stopped due to social reasons/too much hassle (please post)

    Votes: 0 0.0%
  • been on it 6 months - 2 years (please post)

    Votes: 0 0.0%
  • 25%-50% reduction in meds

    Votes: 0 0.0%

  • Total voters
    8

dave58

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Here to gather real data from actual keto/MAD people. I suppose I need to share my data point. I'll do this as briefly as possible to avoid the tl;dr. I'll fill in gaps if anyone is interested.

Diagnosed with complex partial seizures as an adult. Ramped up Lamictal XR to 400mg/day over the last eight years. I felt like I needed to increase the dosage yet was worried about not having much headroom left. Three months ago, I started the ketogenic diet.

(skip some details)

As of today, I am drug free and feel pretty good, at least as good as I did four months ago. 3-4 times over the last three months I took a 25mg lamotrigine bump to get through rocky periods.

Blood labs are normal as of last week.

I have many questions for those who have been on the diet for an extended period of time. I also have major rants about why this diet isn't used more widespread. It's very difficult and all consuming to follow but the benefits are astonishing.
 

Dutch mom

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My son is on the classical keto diet since 2004, 11 years next month.

In short:

Lennox Gastaut syndrome, symptomatic due to brain damage, severely mentally and physically disabled, med resistant (has tried over 10 meds from age 1,5 till 5, mostly poly therapy, 2 different aeds + 1 benzo without significant success, just a lot of side effects.) Before diet he had 99% seizure activity on all EEG's, slow spikes and waves on the background, 10-100 seizures a day, all types: absences, atonics, myoclonics, tonics, tonic-clonics and complex partials.

Seizure reduction since week 1 on the diet when we still were hospitalized for starting out on the diet, ketosis even wasn't adequate while seizures occurred less frequent and less severe. EEG +70% improved after 6 months on the diet, seizure reduction about 80% in frequency, severity and time they last.

Never has been 100% seizure free (and probably never will be) but seizures reduced significantly in number, time they last and severity. He still has tc's and sometimes tonics but they never last longer than 30-60 sec's, before diet 10+ minutes, we never have to use clonazepam anymore to stop them, before diet almost every day and at least 4-5 times a week.

Since 1 year on the diet he doesn't use any aeds anymore and never has since. He tolerates the diet quite well, doesn't know any better since he has been on it most of his life now. So the diet has improved his quality of life (and ours) in a very important way.

He's doing the classical keto diet 100% oral (no tube feeding, no Ketocal)with about 90% fats from mainly oils, mayonnaise and other products with unsaturated fats, he doesn't get many saturated fats like cream and bacon. Proteins mainly from things like boiled egg white, omelets, mushrooms etc. Very little carbs, less than 2 gr per meal. Three equal meals a day, same ratio (3.7:1 now, we did ratio 4:1 until age 15), very low on calories, no in-betweens. Gets daily supplements (vitamins, minerals, extra calcium and carnitine) and Zantac for reflux.

Keto check ups (blood, urine/kidney's, heart, growth and weight, bone density) every six months in a multi disciplinary team wit a pediatrician, a neurologist and a keto-dietitian in an academic children's hospital. Never had problems with cholesterol, cardio, bone density, kidney's etc. Has a growth delay in length but not in weight. Main side effect is constipation. He gets daily macrogol for softer stools and water colonics or enemas when needed.
 

masterjen

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dave58: it would have been interesting to see the results of the poll if two more options were included:
1. "I know a fair bit about it, but have chosen not to try it and/or my seizures are adequately controlled on medication."
2. "It has been discouraged by my doctors due to other health issues."
 

Nakamova

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:agree:

I'm option 1. in masterjen's list. :)

I think diet can potentially play a contributing or primary role in seizure treatment (before meds were developed, long-term fasting was one recommended approach), but perhaps not for everyone.
 

dave58

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Dutch mom-
Thank you for the post. 11 years of 3.7:1 is the stuff of superheros!

masterjen-
It would be great if polls could have many more choices! I admit, I could have done better. I don't think I can edit it now.

Nakamova-
I totally agree. It isn't for everyone. I'm not sure if it's for me. It's all consuming. I've only been on it for 3.5 months. However, for me, I like the idea of not taking increasing amounts of drugs(and worrying about hitting the ceiling) and that maybe there is a chance of a reset...
 

Dutch mom

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Dutch mom-
Thank you for the post. 11 years of 3.7:1 is the stuff of superheros!
He's just 6 months at ratio 3.7:1 now, before 12 months at 3.8:1 and 9,5 years at 4:1. No heroes, maybe we were when we started out on keto, he certainly was, but after so many years it is just normal for us, we are so used to calculating, cooking and he is to eating keto, we do it by routine and in very little time. The effort is peanuts now. We know all useful products, more and more low carb new products came on the market in the last decade and we weigh out 0.1 gram amounts of most products out on a scale with out eyes closed and have a very steady hand for amounts and weights. We do know many meal plans by head and don't need to check out the prints of our Excel calculator for his favorite meals. And we have built up a supply of many, many easy to cook quick meals.

When he was getting older, op to age 15-16, keeping up such a high ratio as 4:1 got more and more difficult because of his increased protein goals for growth together with increased calorie needs, which decreases carbs more and more and it is almost 'uncookable' to calculate meals with just 1 gr or even less carbs. So we were forced by his ageing to lower the ratio a bit. I must say he doesn't tolerate this always as well as we would want, he did better on 4:1. He does best on a 3.5 to 4 blood ketosis, under 3.5 or over 4.0 we always see more seizures occurring.
 
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dave58

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Dutch mom-
You hit an important point. You have been diligent and scientific and found the threshold. It takes a lot of effort. It's easy to run into a burning house once but a true hero puts out the flames on a daily basis for years. Good on you.

I eventually need to find my ratio/carb threshold, as does everyone.
 

Dutch mom

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Hi Dave,

We've found out by years of experience that in many cases for maintaining seizure reduction and adequate ketosis calorie restriction is even more important that ratio. The diets' success comes with low (but not too low, just enough) calories and a very individual ratio and ketone level.
 

dave58

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Hi Dave,

We've found out by years of experience that in many cases for maintaining seizure reduction and adequate ketosis calorie restriction is even more important that ratio. The diets' success comes with low (but not too low, just enough) calories and a very individual ratio and ketone level.
Calorie Restriction.

Thanks for passing that info along. I haven't heard any mention of it before but it makes perfect sense for multiple reasons.

I'm probably one of the few that hasn't lost weight on a LCHF diet. I am not eating at a caloric deficit. Especially in the beginning, I didn't feel good if I didn't eat enough protein or fat. I am now trying to adjust and get the total calories under better control.

I think I'm over the honeymoon period of going crazy on bacon, pork ribs, brisket and other such things. My aim is to eat cleaner and add fat as needed.

Saturated fats are bad? Mayo, olive and coconut oil ok?

I appreciate your hard earned information. I wish there was an information clearinghouse where only long term "been there done that" people could post their experience.

I'm relatively new at this but have spent an unhealthy amount of time searching the internet. Hard information is difficult to come by.
 

Dutch mom

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Hi Dave,

Loosing weight is not ok unless you were overweight when starting out on the keto diet, when you're overweight it's a good way for loosing some pounds until your're on a healthy weight. Then calories need to be increased to remain on a healthy weight.

The body always will use the carbs in our food as the first resource for energy as carbs are the most easy to metabolize. Second the body will use the proteins and last the
fats which are the most difficult to metabolize. When your calorie intake is too high, all carbs will be used first, the not burned fats will be and stored as body fat. When not all fats are being burned, the ratio won't be as you planned and ketosis will not be as adequate as it could have been when all fats were burned.

That's why the diet works best by grace of calorie restriction, just like when a person is fasting long term and burns body fats (and looses weight.)

The same way with a to low calorie intake, than not just the carbs but also proteins will be used for burning and energy, the muscles will be to low on protein and muscle tissue will be burned, causing muscle weakness and children won't grow adequate. Fats will be burned as last resource causing weight loss. That's why neither to high nor to low calorie intake is important on keto, especially when one is long term on the diet and for children who need to grow.

When on the keto diet a dietitian needs to calculate exactly how many calories a individual person needs, based on sex, age, start out weight and how active a person is in daily life (sports, exercise, walking, biking etc.) Sometimes a Delta Track test can be helpful to find out how many calories a person needs based on energy intake, my son had one twice and both times the test showed he has an extremely low energy level and needs far less calories than we and the dietitian thought based on his age, growth goal and energy habits (being in a wheelchair means this will be lower anyway.) Both times his calorie intake was decreased to establish adequate ketosis again after it had been structurally too low.

Saturated fats are bad for cholesterol levels and fatty acids in the blood, this can cause cardiac, vein and liver problems on the long term. Products based on animal fats like cream and bacon are saturated fats and products based on vegetable oils like olive oil and mayonnaise are usually unsaturated. But coconut oil on the contrary is not unsaturated, it contains mainly saturated fats. Coconut oil is a useful product on keto because it contains medium chain fatty acids which are more easy to metabolize for the body than long chain fatty acids. That's just why the MCT variant of the keto diet uses Liguigen and MCT oil. But for healthy cholesterol and blood fat acids it's better not to use to much coconut oil on the keto diet.

A very good English source for the keto diet and useful products and recipes is the website of the UK Matthews Friends Foundation, http://www.matthewsfriends.org/ they have a very useful Facebook group too.

Another useful one is the US Charlie Foundation. https://www.charliefoundation.org/
 
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dave58

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I have spent time on both of those sites.

My blood labs are good, did them just last week. I'd call the lipid panel excellent! I can stand to lose weight. That goal is secondary. I spent time with various calculators and did have a casual talk with a nutritionist.

I am eating ~20g net carbs a day.
 

dave58

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Big Concern!

One of my biggest concerns is what would happen if someone who is "keto adapted" (correct term?) is hospitalized and given glucose/dextrose in an IV?

Or, how would you plan for a surgery?
 

Dutch mom

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Joni's medical emergency plan (which is translated in English, Spanish and French together with a dietitian letter for on vacations, a print it always in his wheelchair back sac and in front of the car window when we're on vacation) says not to give him glucose IV but just a salt solution unless his life is in danger when no glucose is given. This is also instructed in his digital patient file,
 

jsengle

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Research Results

Med student and person living with epilepsy here

Ketogenic diet works and was spear headed by John Hopkins University. Here some more recent research results from Pubmed for you to look at. Best of luck!

"Sixteen subjects were recruited with mean seizure frequency of 0.35-52.5 per day. After treatment, there was a significant reduction in seizure frequency, ranging from 12% to 100% (p = 0.002 at 1 month, and 0.001 at 3 months). 64.3% of the subjects achieved more than 50% seizure reduction at 3 months and 28.6% of the patients were seizure-free. Common adverse effects were initial weight loss (37.5%) and nausea (25%). 87.5% of subjects and parents were satisfied with the MCT KD with 2 cases dropping-out due to diarrhea and non-compliance."
 

masterjen

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Sixteen subjects?! Don't mean this to sound as harsh as it does, but as a med student I'm sure even you know this is an incredibly small sample size on which to base results! For only 16 subjects to be used it sounds like this was more of a pilot study to report that results may be encouraging "but that a much larger sample size is needed to show show more accurate percentages of success vs. lack of success with the diet as reported in the pilot study". I'm sure studies with far larger subject groups are out there; it would be nice if you reported on these as well.
 

dave58

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masterjen-
I agree!

To all-
I have read that and many other studies. Besides sample size, protocols, controls(and lack thereof), choice of candidates, motivation for the study, I have so many other questions. The studies don't tell the whole story!

When there are failures, I want to know why. Take for example the 25% nausea and the two that dropped out. Yes, it had to be reported for this study but after the fact was their diet adjusted?

I just found my coconut oil tolerance level two days ago! Am I quitting? No, I'm adjusting it down. More on that later.

I'm on this forum because I want to interact with people who live with it every day. To drive this point home:

If I was a woman, I'd go to a female OB GYN. How can a man have the same level of understanding? (This is not meant to be sexist!)

A friend is a T1 diabetic. He's had a long line of endocrinologists who are dangerously clueless. it's the educators(nurses) who they themselves are T1D's that have the wealth of knowledge and have been helpful. Or at least not parroting canned information.

So, I want to get info from long term KD/MAD who are epileptics or caregivers like Dutch mom. I want hands on intelligent first hand knowledge.

Back to coconut oil...
I avoided it up until last week for many reasons, some not logical. (I'm a curmudgeon and don't love hipsters!) After seeing more Alzheimer's and other brain articles I decided to try it. Within an hour of my first hit I felt different, better.

I've been taking only 1-3Tb/day, I'd like to take a little more. Aphasia, memory, light headedness are all a little bit better. Days that I only had 1Tb I felt dumber.

Anyone care to share any singular food that made a difference to them? Or experience with coconut or MCT oil dosing?
 

jsengle

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@ MasterJen: I appreciate your scrutiny (no need to worry about sounding harsh - it is important to make sure the information put out there is correct). I would respond with 2 points:

1.) You are correct: The sample size in this study is small. However, as you know sample size is not the only factor that goes into the study's statistical power. The power is also in part influenced by the magnitude of the effect. In this case, two-thirds of the patients showed a 50% reduction in seizures, which is a large magnitude of effect which would increase the study's power. This makes sense when you think about it: if there was a 1% reduction in seizures that would be more likely to be explained by chance. However, when the reduction in seizures goes up, it is less likely to be explained by chance.

2.) If this was the only study out there I certainly wouldn't base recommendations on this one study. I was more using it as an example of one of many studies that have some the effectiveness of the keto diet. My larger point was that the ketogenic diet has actually been around since the early 1900s, spearheaded by John Hopkins, and has been shown to reduce seizure frequency, esp in pediatric patients with medication resistant seizures.

Thank you Jen for posting. You bring up good points!

@dave58 Is your point that you want to hear directly from patients instead of studies? If so, I think both are important! That is a very valuable point to bring up and I appreciate you posting about it. I have actually helped out with a cooking class that teaches epileptic patients a modified akins diet (a less extreme version of the keto diet). When talking with the patients, they reported that the diet has helped them greatly. Obviously this is a biased sample because if the diet wasn't helping them they probably wouldn't be there! So I probably didn't get the chance to talk to patients for which this diet didn't work. However, overall I have talked to enough patients and neurologists that treat epilepsy to recommend it.

I appreciate your post Dave!
 
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jsengle

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There is one point about safety I do want to bring up about this diet that is so important it deserves a separate post!

It is my understanding that this diet would be dangerous for diabetic patients or people with impaired kidneys!

As the name suggests, this diet raises the level of ketones in your body. Essentially you are making these ketones your body's primarily energy source instead of norm which is glucose (sugar). Most healthy people can clear these ketones without incident. However, for people with diabetes or impaired kidney function, they can have difficulty clearing these ketones leading to these ketones building up to dangerous levels.

So as with everything, although I believe heavily in this diet, talk to your doctor before trying, esp if you have one of these two conditions.
 

Dutch mom

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Sixteen subjects?! Don't mean this to sound as harsh as it does, but as a med student I'm sure even you know this is an incredibly small sample size on which to base results! For only 16 subjects to be used it sounds like this was more of a pilot study to report that results may be encouraging "but that a much larger sample size is needed to show show more accurate percentages of success vs. lack of success with the diet as reported in the pilot study". I'm sure studies with far larger subject groups are out there; it would be nice if you reported on these as well.
So, I want to get info from long term KD/MAD who are epileptics or caregivers like Dutch mom. I want hands on intelligent first hand knowledge.



A few interesting links and files to start out with, I've got many more in my 12 years of 'archive'.

https://www.epilepsyresearch.org.uk/ten-year-study-highlights-effectiveness-of-ketogenic-diets/

http://www.kalbemed.com/Portals/6/KOMELIB/NUTRITION/Nutrisi/Nutrisi/Ketogenic%20diet%20for%20the%20treatment%20of%20refractory%20epilepsy%20in%20children.pdf

http://www.epilepsybehavior.com/article/S1525-5050(15)00407-2/abstract

http://www.epilepsy.com/article/201...ail&utm_term=0_cf0feb6500-bd6c758fbd-12064845

http://ajcn.nutrition.org/content/8...id=1&usestrictdates=yes&resourcetype=HWCIT&ct

https://www.aesnet.org/meetings_events/annual_meeting_abstracts/view/2325021



View attachment Predictors of Ketogenic Diet Efficacy.pdf

View attachment Dietary and Medication Adjustments and the KD Efficiecy.pdf

View attachment Enteral and Parenteral applications og the KD therapy.pdf

View attachment Ketogenic diet in patients with Lennox–Gastaut syndrome.pdf

View attachment Length and growth on the ketogenic diet.pdf

View attachment Kidney stones and the ketogenic diet.pdf

View attachment Sudden Cardiac Death and the KD.pdf
 
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dave58

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It is my understanding that this diet would be dangerous for diabetic patients or people with impaired kidneys!


Just do a google search on "ketogenic diet diabetes"!!

LCHF is fantastic tool for diabetics. Magnitudes difference between ketosis and diabetic ketoacidosis.

I've actually done more reading on the diets outside of the epilepsy community, we are only a subset. It was my T1D friend who first told me about it.

Yes, LCHF can be bad - especially if you don't do it right. I'm sure there are some people who absolutely can't tolerate it. However, for example, all the people who get stones, what was their water intake? Was there predisposition? Was their diet tuned? Labs?

There was a recent study that said that T1 diabetics have a higher than average chance of having epilepsy. Isn't that interesting? The tie between glucose, ketones and insulin are fascinating.
(the forum won't let me post the link, you can search for it if you want)

There are books and youtube videos that feature some MD's that are T1 diabetics and on LCHF. Dr. Richard Bernstein is probably the most well know. He's pretty awesome, he used himself as a guinea pig to do tests on.

Thank you Dutch mom for the links! I have some reading to do.
 
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