Eager to learn - measuring ketones

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keto_tech

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Hello, everyone. I am a postdoctoral researcher at Texas Tech University. I am neither epileptic nor related to someone with epilepsy. I am here to learn about epilepsy, more specifically, about the use of the ketogenic diet to treat epilepsy.

I understand that treatment with the ketogenic diet is controversial, and I am really not concerned about the efficacy. Our research is focused on measuring ketones, and we believe this could help people going through this treatment to monitor their state of ketosis. We would like to understand the challenges that patients face when trying to measure ketones.

Thanks in advance for all your help.
 
Hi kt, welcome to the forum. :hello:

I changed the thread title for you to catch the eye of members here that are using the ketogenic diet.
 
Hi Keto Tech

I've been off and on in ketosis for years.

The measuring devices that are available are the urine sticks and the diabetic blood monitors which involve finger poking .
The urine sticks are helpful when first getting started but then decline in efficacy once ketosis is established because they only measure the ketones being excreted, not the ketones circulating and being used for fuel.
The finger poking method is much more accurate but I don't want to be stabbing myself constantly since I don't have diabetes.

If you could come up with something as accurate as the blood monitors but with the convenience of the urine sticks, that would be awesome.
 
Welcome Keto_Tech,

My 16-year old special needs son with Lennox Gastaut syndrome caused by brain damage is on the classical version of the ketogenic diet since June 2004, so for over eleven years now. At this moment he is the longest on the diet from all kids who are and have been on the diet in The Netherlands. In those 11.5 years het went from 4:1 to 3.7:1 ratio, we are about to get him on 3.5:1 He is not tube fed, we do cook him classical ketgenic meals with LCT fats. He is not seizure free but the diet helpes to reduce his seizures significantly since the first week he started on the diet. Before the diet he had all types of seizures (absences, atonics, tonics, tonic-clonics, complex partials), getting worse and worse up to about 50 or more a day. He has a seizure reduction from about 70-80% compared to pre diet (that's with ups and downs) and his seizures do last no longer than half a minute to a minute (10+ minutes before the diet.) Thanks to the keto diet he has been free from all anti epileptic drugs for over 10 years (he has tried 10+ AEDs before the diet, usually two different AEDs together combined with a benzodiazepine, without any success.) While we had to use clonazepam regularly to stop longer seizures before the diet, we hardly have to use it anymore for the last 10 years. His last EEG was long time ago but was improved over 70% compared to before the diet.

We started out measuring ketones with urine dip sticks 11-12 years ago which was a real problem because he is incontinent and is wearing a diaper. So it was impossible to measure fresh urine ketones. Urine ketones were unreliable so we were glad when the ketone-glucose blood device for use at home came on the market. Since then we do measure blood ketones without any problems. We don't measure ketones regularly anymore since he is stable in ketosis for most of the time. When we do see an increase in seizure activity, we do a finger prick and usually this comes with ketosis under 3.5 - this seems to be his critical lower limit - sometimes even very low (1.2, 1.7 or so.) This is certain to happen when he is ill, has a cold, a fever or other medical issues. Other times we discover a change in the nutritional values of products we do use or he seems to need more (or less) calories. My son can't talk or understand what we tell him but in many cases of low ketosis causing seizures, he simply does refuse one or two meals, as if his body knows fasting will help to get adequate ketosis back, and he seems to have learned to react instinctively in all those years.

The ketogenic diet isn't as controversial anymore as it was when we stated it 11.5 years ago. In The Netherlands more and more academic children's hospitals and epilepsy clinics do prescribe the diet much earlier than they did in the past. The diet is no longer a last desperate try when many medicines didn't help and not just for kids with the worst epilepsy syndromes. It is moving towards a first line treatment more and more. I've seen more and more older kids, teenagers and recently even (young) adults trying the diet while it used to be a treatment for kids up to about 12 before. And last but not least: more and more neurologist, other doctors and dietitians are well educated on the diet and believe in it as a worthwhile alternative for drug treatment, while before there was just a hand full of 'believers' and far more skeptics. The diet, as well as ketone measuring, has made a great development in the past 10 years.
 
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Thanks

Thanks a lot for your responses. This is very valuable information that will certainly help us assess the needs.
 
Do you mean the diet itself is hard to follow, or the measurement of ketones is hard?
 
The diet has saved quite a few children's lives ,I watching a film about little boy he fully functioning man now thanks to that diet.
for my daughter I not sure I could have done it unless her e had been of nature that I no chose.She was server eating problems she would been totally unco-operative.As my my e I do anything come off meds but that diet I don't think works for adults if it did I don't think I could do it it,but I am trying to do aloha diet apart from the starving bit
 
Do you mean the diet itself is hard to follow, or the measurement of ketones is hard?

imagine going on weight watchers or like a low, low carb diet for 3yrs.

3 solid years. 50g or less or sugars/carbs per day. & thats for someone 125lbs +.

kids even have less since they weigh like 70lb when they are 6,8,9yrs old.

they goto birthday parties with cake, eat candy, bullsh!t foods, etc.


the diet works, but in real life its is extremely hard to follow. Especially once you start to stack the years.

I know i couldnt do it.
 
Ii have great respect for the parents who do this for their children it no easy life chose you got be dedicated takes a special person my respects to all parents who do this diet with children you got be very special parents and children lucky have parents who take this route
 
It's a prejudice the diet is so very hard to do. EWe thought exactly the same about the diet before we decided to try it. We didn't believe it would be well tolerated by my son, we doubted the effect and feared the work, were afraid of the possible (long term) side effects and the risk that our son would not eat and grow well anymore. But nevertheless we decided to give the diet a chance and looking back, this was the best decision we ever made for our boy.

The first few months are the difficult period, children have to get used to the diet, physically and mentally, parents have to get used to it and have to learn how to calculate and cook the meals. That isn't an easy task and the help of a good supportive dietitian and other, more experienced parents, is very welcome. But especially special needs kids and small kids do get used to the diet relatively easy, they know no better in a few months and especially when the diet is effective, stops or reduces the seizures and makes their quality of life a lot better, it's very much worth all the effort.

Calculating and cooking a ketogenic meal takes no more than 10-15 minutes now. We got used to it in just a few months. We've learned to cook several meals a day before and to prepare 2 or 3 meals at the same time. We know how cook in batches very efficiently. We have learned very quickly what he does and doesn't likes to eat, what is easy and difficult to calculate and to cook with, we've learned which products are suitable, contain the most proteins, most fats, good unsaturated fats and the least carbs, we do know many nutritional values of products out of out head now, we have developed a very steady hand in portioning products accurately in 1 gram on our scale, I can do this almost without a scale and with my eyes closed by 0.5 grams precisely.

My son did suffer so much more from all the seizures and the many side effects of all the medicine compared to pre diet. The diet made him eat and enjoy his meals so much more than before and he still does. Each meal is a small party for him, each ketogenic snack is appreciated so much. And the diet gave him the opportunity to get and stay free of AEDs for over 10 years now. The only negative long term side effect he suffers is constipation, which always is a risk when a kid is wheelchair bound and not walking and this risk is increased by the diet which has very little fibers and a lot of fat (90%) in it. Using a lot of oil helps a bit but nevertheless we do battle the constipation for many years now.
 
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if my daughter had Lennox I do it.I seen kids with Lennox 30yrs ago it was different then medication and treatment or lack of it ,I saw parents tearing hair out and children suffer felt so sorry for them,in those days outcomes different than today and if only that diet had been more accepted I sure life been better...If I been in your position DM I would tried diet as mother you do anything for your children but standing from my point it would been difficult I seen what you have to do and the food I can see need dedication but as I said we do anything for our children.Out of intrest do you all eat it as family or just your son
 
Just my son eats keto. It would be dangerous to eat it as a family since my husband, I and my other 2 kids are not medically monitored like my son is every six months. And it would be very hard to do because meal goals (needed calories, needed proteins for growth, ratio fat:= protein + carbs : fats) are individually calculated for each person. We would need to cook 5 very different meals if we all did keto. But fortunately my eldest son is so severely handicapped he doesn't realize that we eat different meals from him, so his unfortunate faith is a fortunate thing when it comes to this diet.
 
Do you husband eAt separately do he get cross when he sees other food...with my daughter she had childhood e plus they thought Prada Willi (forgot Name)turn out not but similar problems was nightmare her eating still is.
 
Do you husband eAt separately do he get cross when he sees other food...with my daughter she had childhood e plus they thought Prada Willi (forgot Name)turn out not but similar problems was nightmare her eating still is.

Usually he has breakfast together with our other two kids. Lunch he gets at the special needs daycare on week days, he does bring a lunch box with his ketogenic lunch from home. He often gets his ketogenic dinner half an hour before the rest of the family has dinner, so we can eat comfortable without having to feed him. Because he may not spill any food, that is important for the right ratio, and has to be fed, it takes concentration and time to feed him his meals. We have 2 caregivers, each of them is coming 2 x a week when he is back home from daycare, they do walk with him in his wheelchair outside, do feed him, bath and wash him, put on his pyjamas, brush his teeth etc. and do play with him while my husband is cooking dinner and I'm still at work or travelling home. Usually they have dinner together with our family when Joni is already fed. On other days he eats together with us, he is to severely handicapped to realize we do eat other foods and he has a CVI (visual disorder) that prevents him from being aware/noticing that we do eat other things than he is having. But there is nothing wrong with his smelling so we do try to give him food that smells a bit similar to what is cooked for the rest of the family.
 
Why is ketons so important what the chemical chain behind it?

Researchers still don't know exactly how the diet works against epileptic seizures. There are several theories about the working of the diet and the role of ketones in it but there is no consensus or clear prove yet. They still are doing research because they do hope understanding the principle behind the diet might help to find en develop other treatments for epilepsy that are less radical than the diet.

Here is a more complex scientific explanation: http://www.neurorexia.com/2013/03/2...ular-neuroscience-look-at-the-ketogenic-diet/

This is a more simple explanation of the working of the diet and the role of ketones in it:


Ketones are a beneficial product of fat metabolism in the body. When carbohydrate intake is restricted, it lowers blood sugar and insulin levels. As insulin levels fall and energy is needed, fatty acids flow from the fat cells into the bloodstream and are taken up by various cells and metabolized in a process called beta-oxidation.
The end result of beta-oxidation is a molecule called acetyl-coA, and as more fatty acids are released and metabolized, acetyl-coA levels in the cells rise. This causes a sort of metabolic “feedback loop” which triggers liver cells to shunt excess acetyl-Coa into ketogenesis, or the making of ketone bodies.

Once created, the liver dumps the ketone bodies into the blood stream and they are taken up by skeletal and heart muscle cells at rates of availability. In addition, the brain begins to use ketones as an alternate fuel when blood levels are high enough to cross the blood brain barrier.

There are three major types of ketone bodies present in the human blood stream when the metabolic process of ketosis is dominant:

  1. Acetoacetate (AcAc) is created first
  2. β-hydroxybutyrate (BHB) is created from acetoacetate
  3. Acetone is a spontaneously created side product of acetoacetate
In times of starvation, or a low carbohydrate intake resulting in low insulin levels, ketone bodies supply up to 50% of the energy requirements for most body tissues, and up to 70% of the energy required by the brain.

Glucose is the main source of fuel for neurons when the diet is high in carbohydrates. But when carbs are restricted, ketogenesis becomes the primary fuel process for most cells.

During fasting or low carbohydrate intake, levels of ketone bodies in the blood stream can rise to levels between 0.5mM and 5 mM, depending on the amount of protein and carbohydrates consumed. This state is called nutritional ketosis.

After a few weeks of adapting to a ketogenic diet, most people's blood ketone levels go above the 1 mM level. As the levels of ketone bodies rise, the brain begins to use more than half of them for fuel.

In addition, the muscles of the body use all of the ketone body types. But after a few weeks of keto-adaptation, the muscles start converting the acetoacetate into β-hydroxybutyrate (BhoB) and returning it to circulation. Although BoHB is the more stable molecule, when it is taken up by muscle tissues, it has to be converted back to acetoacetate so that cells can metabolize it. The conversion between BHoB and Acetoacetate goes back and forth depending on where in the metabolism it is being used. The third type of ketone, acetone is very volatile and released in the breath and urine. However it also has some effects on brain signaling and it prevents neuron hyperexcitability, which may explain why being in ketosis can calm neurological conditions such as epilepsy.

As time on a ketogenic diet progresses, the body becomes more efficient at using ketones for fuel. The kidneys adapt and get better at reabsorbing larger amounts of acetoacetate and the brain and muscles get more efficient in using circulating BoHB.

So the longer you are eating low carb, the less MEASURABLE ketone bodies will show up in your urine and on the Ketostix because the kidneys get better at absorbing them. In other words, it will seem like ketosis is slowing. However, at this point, your brain and muscles will be happily burning ketones for fuel, and as long as you stay under your carb sensitivity levels, you will be burning stored fat as your main energy source.

The good news is that just recently, several companies have developed a blood meter to check for blood levels of BHoB at home. I've included links to these new products in the side bar at right. Note that the strips are pretty expensive. Other companies are working on a breath ketone analyzer, which may be cheaper, and have a better correlation to blood ketones as acetone is not filtered or reabsorbed by the lungs.
 
Measuring ketones

From your own experience (not from reading or hearsay), what do you like or dislike about ketone measuring options? In an ideal situation, how would you like to measure them?

Thanks.
 
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Hello.Go to thread where they discussing it I think they said how on that thread.Follow Dutch mom she explained it well.afraid not remember which thread it is ,that e for ya memory like tin of dog food.Sure you find it
 
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