My Epilepsy Experiment. Anyone else have seizures? page 5

[Paleobird]

Fingers crossed.

Thank you, Joanie. I appreciate it.

I had some good neuros over the years...one wanted me to go off the meds and said I could do it under HIS direction, so that if I were to seize he said he would cover for it and I would NOT lose my license. Despite that promise I still didnt want to go off of it...I didnt feel ready that time. (I was eating a rather SAD diet heavy in dairy in gluten, and perhaps that was actually the best choice at the time.)

Now that's an awesome neuro. I know what you mean about "feeling ready". I'm finally feeling that way. I feel like I have all the damages from my cancer healed up and in the past, I've lost all the weight I want to lose and am maintaining nicely. With what I've been learning about keto, it just seemed like the right time to give it a try.

[solstice]

You are inspiring me to continue to work on my own diet/lifestyle!

[snowkid03]

Hello fellow San Diego person. I didn't realize that there was a connection between autism and epilepsy. Interesting. So, I take it you have to deal with a fair number of seizures in the kids you teach? BTW, you are a saint for doing that work. That is not easy.

well thanks. i do deal with a fair few seizures... for my students that have grand mal/diastat i have a class nurse as legally i'm not allowed to administer it. kids with autism are something like 40% more likely to develop epilepsy than the "normal" population, which i believe hovers around 5%- but kids with autism- especially boys, are more likely to develop it around puberty or beyond. i educate the parents about dietary changes that have shown beneficial, but most are so drained from their child at home the idea of changing diet is unthinkable to them.

loooove my job. today is the first day of school... It is time for some change related chaos yes san diego- im up in north county coastal. love it here!

[Paleobird]

You might be able to direct any of the parents that can still think straight to the AtkinsForSeizures.com website. It is a support group of mostly parents dealing with epileptic children through diet. Lots of helpful suggestions there.

Seriously, if I were catholic I would be submitting your name for sainthood. Have fun at school.

[Luce]

I appreciate the offer. They have avery long waiting list to get into their study group and they only take people for whom medication is not effective so I don't qualify. The drugs do work for me but I'm concerned about the long term effects.

People who is not refractory to drug treatment has better outcomes with ketosis, a deeper ketotic state than what we call ketotic here when starting but reports are good. Then diet should be tailored to the patient needs and those vary significantly. I know someone who tried this with her daughter but they fail to keep her away from sweets, she has other disabilities (Cornelia de Lange related) and saying no comes hard when other kids go pizza.

It's unnerving how meds with huge side effects displaced diet as a treatment of seizures, diabetes and some other conditions. Is great there are pills but people should be given the chance to try and heal without them.

Luce

[Paleobird]

People who is not refractory to drug treatment has better outcomes with ketosis, a deeper ketotic state than what we call ketotic here when starting but reports are good. Then diet should be tailored to the patient needs and those vary significantly. I know someone who tried this with her daughter but they fail to keep her away from sweets, she has other disabilities (Cornelia de Lange related) and saying no comes hard when other kids go pizza.

It's unnerving how meds with huge side effects displaced diet as a treatment of seizures, diabetes and some other conditions. Is great there are pills but people should be given the chance to try and heal without them.

Luce

Interesting. I would like to know where you are getting your data on that so I can look into it more. Thank you.

[Luce]

Interesting. I would like to know where you are getting your data on that so I can look into it more. Thank you.

Is old data, more than twenty years ago I went through everything there was on ketosis because of my grandgrandmother (diabetic) and little brother (on tegretol since infancy because of seizure, today seizure free medication free since ten years). Most modern studies are about pediatric cases and things don't work exactly the same way with adults (or teenagers). Most of material was paper, no internet when I was little and curious. I got into the thing again because the woman who lives with my ex husband has a nephew with a severe condition which includes life threatening seizures, refractory and not accepting diet limitations. I found stuff -modern stuff- on the internet but most of the old material I couldn't get.

You don't fit the protocol because you do well on drugs? I remember something relating phenobarbital with less success rate in patients going ketotic but I'll have to go through some brain debriefing before I remember where the hell I got that from (avid reader, particular sort of memory: I may retrieve concepts but for a reason I loose context sometimes).

Have you read ancient greek work on diet and ketosis? I remember I was in total awe while reading it when I first looked into it.

Luce

[Paleobird]

Yes, they did tend to concentrate all the research on children for a while there and, true, pediatric epilepsy is a different best from adult epilepsy.

I'm glad your brother has become seizure free.

That's fascinating about ancient Greek work on this subject. I must look that up.

[Quies]

I started having seizures when I was about 1 1/2 years old and I still have them at 27. (Pro-tip for parents with epileptic kids: Don't dwell on what your kid can't do, they only know what they are missing if people tell them.) They range from three in four days to a year and a half apart and tend to be stress induced (Physical or mental, usually both), though if I go more than 9-10 months without one then I'll start having auras over every little thing until something trips it. I have them down to 1-2 per year with stress management.

I was on phenobarbital for a while during elementary school but I was taken off because it gave me horrible hallucinations. In high school I was put on lamictal which did not work, and later trileptal which also didn't work. I weaned myself off trileptal when I started college. I split my last bottle up so I would have equal amounts of time at 75%, 50%, and 25%, so roughly two weeks at each level and never had any bad things happen because of it.

I'm looking at ketosis to possibly eliminate them but using Paleobird's formula's from other threads, I'm not sure how I'd manage that few carbs.

[Paleobird]

I started having seizures when I was about 1 1/2 years old and I still have them at 27. (Pro-tip for parents with epileptic kids: Don't dwell on what your kid can't do, they only know what they are missing if people tell them.) They range from three in four days to a year and a half apart and tend to be stress induced (Physical or mental, usually both), though if I go more than 9-10 months without one then I'll start having auras over every little thing until something trips it. I have them down to 1-2 per year with stress management.

I was on phenobarbital for a while during elementary school but I was taken off because it gave me horrible hallucinations. In high school I was put on lamictal which did not work, and later trileptal which also didn't work. I weaned myself off trileptal when I started college. I split my last bottle up so I would have equal amounts of time at 75%, 50%, and 25%, so roughly two weeks at each level and never had any bad things happen because of it.

I'm looking at ketosis to possibly eliminate them but using Paleobird's formula's from other threads, I'm not sure how I'd manage that few carbs.

Being seizure free on less meds is worth giving up sweet potatoes for. I would be interested to hear how things go for you if you decide to give it a try.