[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

Nakamova

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I only checked one of the answers (#11), but I also do wonder why information about Keto/MAD (and diets in general) aren't more readily discussed by the neurologists with their patients. I understand that there are many reasons why a neuro would initiate treatment with medications alone, but for some kinds of seizures (such as absences) the MAD might be worth discussing with a patient as a possible first course of treatment.
 

masterjen

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I only checked one of the answers (#11), but I also do wonder why information about Keto/MAD (and diets in general) aren't more readily discussed by the neurologists with their patients. I understand that there are many reasons why a neuro would initiate treatment with medications alone, but for some kinds of seizures (such as absences) the MAD might be worth discussing with a patient as a possible first course of treatment.
Diet options were never discussed by my doctors, and I had to ask about it. Admittedly they were determined to not be appropriate in my situation and that may be why, but just the same it was up to me to ask about them. I agree various treatments should be brought up by doctors even if they are not feasible so the patient knows and won't attempt something on his/her own and cause problems such as worsening of other medical situations.
 

dave58

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I only checked one of the answers (#11), but I also do wonder why information about Keto/MAD (and diets in general) aren't more readily discussed by the neurologists with their patients. I understand that there are many reasons why a neuro would initiate treatment with medications alone, but for some kinds of seizures (such as absences) the MAD might be worth discussing with a patient as a possible first course of treatment.
This ^.

If drugs aren't working, why not try the diet before surgery? I think for most it wouldn't hurt to try it. They may find that they can live with it, maybe not but why not try?!

I saw a show on PBS a while back. It chronicled the treatment of a few people. Surgery and drugs had limited success. Throughout the entire show I was yelling "keto, keto, keto!" at the TV. Hated to see the suffering of the patients and caregivers. I wanted to know if they were ever told of it.

I am usually not a conspiracy theorist but it takes an open minded doctor/researcher (w/o an agenda) to consider a crazy fat filled diet vs proven drugs and high tech surgery. If the diet(s) become more popular and displaces other treatments then......

I'm going to start another poll! masterjen go ahead and alter it if you want to.
 

Dutch mom

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I certainly would prefer surgery over diet if surgery was an option for my son.

Surgery treats the cause of the seizures and can take it away, a ketogenic diet just battles the symptoms, the underlying cause stays. Surgery can, certainly for children, take away the seizures definitive while the keto diet usually only works for a certain period for children with underlying brain damage like my son's. Life long on a keto diet is not something to wish for. Furthermore the keto diet has a far more restrictive and long term impact on all aspects of daily life while the impact of surgery is relatively short compared to the diet (I'm talking about a pure keto diet on a high ratio, not a modified Atkins or low ratio variant.)

I am a convinced ambassador for the keto diet and convinced the diet deserves a role as first or second line treatment over a third, fourth, fifth etc. medicine when first and second choice meds don't work for intractable epilepsy, but only when surgery is no or not a plausible option for children.

I know several children who have had epilepsy surgery, almost all of them with success, most of them are seizure free and many are med free within several years after surgery. The success rates for surgery are much better than for the keto diet in children.

If my son had a chance that surgery was successful, I would definitely go for that chance and say goodbye to his diet, with thanks for all the good thing it brought for him.
 

Andrew

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Pnpo deficiency

I know a fair bit about it, but have chosen not to try it because my seizures are adequately controlled on B vitamins. I have been prescribed vitamin B6 for over 45 years and I have been using a multi B complex tablet on a daily bases since 1990.

I was diagnosed with an extremely rare condition known as 'PNPO Deficiency' via a genetic test.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Andrew
 
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I have heard of the ketogenic diet, but have chosen to currently not precede with it since my current "diet" (I prefer the term eating habits) has greatly reduced my seizures. Only my movement induced seizures have not improved, but at least now I wake up every morning without my head flying or my shoulder banging into my skull. I currently am taking B vitamins, and am mostly eating vegetables, meals that supply enough protein, nuts, and peanuts. If I'm having a sweet tooth moment then I will grab fruit or peanut butter (sometimes both).
Edit: If my current eating habits stop supplying my body with an adequate amount of seizure control, then I will probably look to the MAD (modified Atkins diet) as my next approach.
 
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Gloria

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Hello, My daughter has been on the Modified Atkins Diet for 2 months. I am not able to check her ketones, because of her behavior, but she has lost 6 kgs in this time and likes the diet.
I have also been doing the same diet, so that she will not feel bad and I needed to lose a few. The problem of becoming acidosis in the beginning of the diet was a problem for me, but it is not the same as the acidosis that is caused by the sudden drop in blood sugar in diabetes. It is more of an acid problem like the ph of the gut and blood. I can tell that I am becoming acidic by a lack of energy, soreness in my joints, especially knees, and stomach acid. I take a teaspoon of baking soda in water and slowly the symptoms resolve.
Some 35 years ago when my son was on the diet, he did become develop severe acidosis, but we believe it was due to an allergic reaction to penicillin, not the diet.
I do not think that everyone that has epilepsy should be on this diet any more than I think everyone with epilepsy should be on Tegretol. It is still a type of medicine and it works by the body producing its own medicine. It can be tiring and frustrating to eat only eggs and tofu, we are veg., and it takes a while to get back to the same energy level as before.
As far as social norms, we take food with us when we go out and make sure that it is not a problem for anyone. We also don't make a big deal about it. If we go to a restaurant, we order omelets and lemon soda (club soda with lemon) and I carry stevia and cream with us for tea. I does take some planning, but not like the original ketogenic diet with all the gram measurements. After a while, you can "eyeball" portions and somethings like olives and a few nuts bring joy!
The positive thing is that my daughter is not asking for food 24/7 as before. I had to hide all the food before, or she would just eat all of it. Now, she can help me in the kitchen and is enjoying looking for new ideas. This is also, why I am looking to try the LGIT diet. there is a little more choice in foods and it appears to be more healthy.
The only problem she has had with the diet is constipation. I believe this occurred when I added peanut butter to the diet.
Thank you!
 
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