Ketogenic diet as treatment for epilepsy?

[Gloriaalexis]

Hi

has anyone have first hand experience with the ketogenic diet?

I would really appreciate feedback. We are going to have supported trial but would like to be more informed on what to expect by others that have tried it.

meds are not working and my son has so many side affects let alone struggling with the condition that it seems we have nothing to lose if we give it a try.

We are aware that it may not work for him but we won't know until he tries.

Your comments are really appreciated.

Thank you x

[zippytiptoes]

Hello, we were offered the Ketogenic diet to try and tackle our child's difficult to control epilepsy but after much deliberation, we decided against it as we have two children and are vegetarian and we felt that as a family it would be too difficult to maintain.

I think had our kids been younger, it may have been easier to implement.

We did a lot of research though and watched the film 'Do no harm' and we're in contact with the very supportive and helpful Matthew's Friends and Daisy Garland. Have you been in touch with them.

We heard great things, but just felt we couldn't commit but then to be fair, we still have an unresolved problem of a child who has many, many seizures in a day.

Really good luck. I hope it's a positive move for you

[Neil123]

Who ever told you ketogenic is a c&@t !!! Cannabis oil stops fits !!! I had a brain tumour that caused fits ketogenic kills the body very dangerous !!! Cannabis soothes the brain activity . Do the research on CBDs and THC . My name is Neil guidera .

[Gloriaalexis in reply to Neil123]

I live in the Uk.. cbd that has higher content of thc than 3% is not attainable legally. I have more kids to support and 14 years or criminal record is not an option I can afford to take. I would compromise my kids future.

I have been aware of cannabis oil and have fully researched but in totally unable to obtain the oil from a safe reliable source.

[Gloriaalexis in reply to Neil123]

Neil my name us Gloria Valencia.

I will look you up in FB.

Thank you

[zippytiptoes in reply to Neil123]

I would love to know more about Cannabidiol. I mentioned it to our neuro who wouldn't entertain the idea but I've heard great, great things about it and as a parent of a child who has over 100 seizures a day, I would be willing to try anything. We looked for trials in our area but there were none. How did you arrive at trying this? We've experienced such terrible behaviour on usual AED and looked at the possibility of Keto diet, but it wasn't for us.

I'd be really interested to hear more.

Thanks

[EpilepsyMum]

Hi, my daughter has been on the keto diet for almost 3 years now. She has complex epilepsy and is almost 13 years old. Since the medication could not control her seizures, it was our only option. She has responded very well to it and we have had periods in which she's been seizure-free (once for 6 months!). She has tried the MCT diet (the oil made her sick); the classical ketogenic diet at a ratio of 2.5:1 which she did well on for quite some time. After two years the diet was withdrawn but seizures returned after several weeks. She is now on the Modified Ketogenic Diet which allows a little more flexibility as it's not so strict. The objective is to ensure the body remains in ketosis at all times. The diets sound difficult and scary but you soon get the hang of it and if your child begins to feel better on the diet (and my daughter does) it's worth the effort. I understand people's concern. It is an extremely abnormal diet but, under the right medical care, any possible health issues are tested for and assessed. My daughter has regular blood tests, cholesterol tests, triglycerides, calcium, etc and growth is assessed. She is growing within the normal range for a child of her age. After two years, withdrawal is advised as the diet can stabilise their epilepsy even when the stop producing ketones. I would recommend you try it and commit to it for a while. What have you got to lose? I hope you get the right support. Good luck!