4

votes

Epilepsy and seizures - please help

Answered on September 12, 2014
Created November 10, 2012 at 2:45 PM

My 2-year-old daughter had a seizure three weeks ago (she's otherwise healthy). Yesterday, her neurologist told us that the abnormal brain scan results are indicative of epilepsy, and that she will likely have more seizures. After the next seizure, he wants to put her on valproic acid. He didn't want to discuss alternative measures and laughed at me when I mentioned the ketogenic diet, stating that he reserved that for patients who are unresponsive to drugs.

My question to anyone out there with seizures: What has helped you? What triggers your seizures? Have you sought help from naturapthic doctors? I know there has been lots of success with elminating processed foods / upping healthy fats (coconut oil seems to be the big one). I refuse to pump my child with drugs without first exploring other options and I am reaching out to anyone who can offer help, even if its as simple as pointing me in the direction of further resources.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 18, 2012
at 11:20 PM

Thank you, I will definitely pick up your book. I am currently reading Patricia Murphy's "Treating Epilepsy Naturally" and I remain hopeful.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 18, 2012
at 11:17 PM

Yes, I'm sure if the media were involved more (including celebrities) then everyone would listen! I have put my daughter on a paleo diet (although not ketogenic) and people look at us like we are from the moon when we mention that we are wheat-free.

C4f1a0c70c4e0dea507c2e346c036bbd

on November 15, 2012
at 03:20 AM

Well I try to get her to eat paleo during meals but she still eats bread. She is special needs, but even normal people don't understand why wheat is bad. People tend to glaze over when you mention lectins, and glutens. If Norman Reedus or Josh Jackson were explaining paleo she might pay attention. She loves those two actors.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 14, 2012
at 12:49 AM

And she has never tried eating a clean diet?

C4f1a0c70c4e0dea507c2e346c036bbd

on November 13, 2012
at 04:17 PM

Tegeratol and lacmicatal. She has had seizures since she was 6 I believe. Used to be grandmals now short 5-10 second ones.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 13, 2012
at 12:18 AM

How old was she when she was diagnosed? And how often does she get seizures now? I'm assuming she is on meds?

61f9349ad28e3c42d1cec58ba4825a7d

(10490)

on November 12, 2012
at 01:37 AM

Thanks! I enjoyed it myself. I agree - I wouldn't RUSH to the ketogenic diet, but I would keep it in mind in combination with drugs and any other treatments. I'm not about pushing pills on children, but we're talking about epilepsy - something that is definitive and can be fatal or cause brain damage - not something that is subjective, self-diagnosed, or over-diagnosed like a kid with ADHD. Also, it's a KID. They are still developing and trust their caregivers to make cautious decisions. I'd experiment on myself before playing fast and loose with a developing child's diet.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 12:57 PM

Thank you very much - I will definitely keep reading, exploring, and using all possible resources. My daughter's neurologist didn't want to discuss any alternative measures with me.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 11:09 AM

If my daughter begins having regular seizures, then yes, I will try anything (including the keto diet) before I put her on medication. Having said that, I wouldn't start this tomorrow because it is highly restrictive and may not be necessary. After all, she had just one seizure so far. I want to focus on other measures first (eating paleo is one of them) as I gather more and more information on the subject. I value everyone's opinions though - thank you

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 11:00 AM

Thank you so much - I will definitely look into your site and everything else that you mentioned. Would you recommend that I start with bloodwork for my daughter, to identify the possibility of deficiencies that could be adding to the issue? I'm not very well versed on the subject just yet (so this could be a shot in the dark) but I've ready multiple accounts of low magnesium levels and their connection with seizures.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:58 AM

That was a good article, Luckie. They had a kid right off the charts with seizures and worked with their doctors and a special dietician. That would be the only way I'd pursue it.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:44 AM

(cont'd)are actually scientists, specialists in a field of science that is just not going to be represented on this site. Or most sites. And that's not a swipe at the people here, but whatever expertise people have here simply doesn't extend to the treatment of complex neurological disorders. It just doesn't. She should seek out parents and children through an epilepsy support group in her area.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:39 AM

Because it's the brain, and yes, that is rocket science. They actually know more about the universe than they do the brain, it IS that complex. And since you don't have a child like mine, I'm afraid that I don't give your opinion much weight. I don't mean that to be rude, but I hae 14 years experience with this, and am way more versed in it than most people. A ketogenic diet for a young child is not a first course of action. I am an adult, I can make decisions about my diet and health. I hae a responsibilty to my daughter to pursue her treatments in ways that are supported by those who

61f9349ad28e3c42d1cec58ba4825a7d

(10490)

on November 11, 2012
at 12:24 AM

Ketogenic diets for epileptic children have been known to adversely affect normal growth. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?pagewanted=all

16e617676c5ac710e5235e0b773edc0b

(2640)

on November 10, 2012
at 11:34 PM

I'm confused as to why anyone (especially on this site) would say to wait on trying a ketogenic diet when pretty much everyone on the planet could benefit from one. It's not "extreme", it's a lower carb paleo diet. If I had a child with epilepsy I would go straight to a ketogenic diet and not ever go back. There is no question in my mind that's the right thing to do.

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9 Answers

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3
Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on November 10, 2012
at 11:05 PM

Ok......breaking my own rule. For details you'll have to come to a safer place like my forum but I want to help your kid because I know the advice your getting is incongruent.

  1. D-ribose
  2. Acetyl L carnitine
  3. PQQ
  4. Diet: Epi-paleo: my version in BG #6 is ketogenic. (http://www.jackkruse.com/brain-gut-6-epi-paleo-rx/)
  5. Mg threonate
  6. ubiquinol

These things will help her immensely neurologically for many diverse reasons. The doses and all that cant be discussed on the internet I am sorry to say........if you don't come follow me to my site, find Sean Coonce on FB who will certainly help you. He is an Paleo Fx starfish and he will want to help a baby starfish with a bio energenic problem in their neurons.

Everything above is about restoring ATP synthesis and maximizing the fuels to mitochondria to make them purr. It is critical to not let xanthine and hypoxanthine empty the phosphate bonds in your childs neurons.......which is why the seizure are happening to begin with it.

Get educated and never settle. Good Luck

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 12:57 PM

Thank you very much - I will definitely keep reading, exploring, and using all possible resources. My daughter's neurologist didn't want to discuss any alternative measures with me.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 11:00 AM

Thank you so much - I will definitely look into your site and everything else that you mentioned. Would you recommend that I start with bloodwork for my daughter, to identify the possibility of deficiencies that could be adding to the issue? I'm not very well versed on the subject just yet (so this could be a shot in the dark) but I've ready multiple accounts of low magnesium levels and their connection with seizures.

3
Cc3ce03985eac5ebcbb95fc2329f13b0

on November 10, 2012
at 06:15 PM

I don't have seizures, but my daughter does. She had a stroke just before she was born and has had seizures since she was born. She has been on 6 different meds throughout her life (she's almost fourteen now) and never acheived control. Last spring she was tested for brain surgery, but failed to have a seizure for the testing. Right now, she hasn't had a seizure in eight months, which is unexpected and I hope she keeps it up.

If your daughter has only had one seizure, no, I would not try the ketogenic diet yet. Everything I have read says it's for intractable epilepsy, so for kids like mine who have had severe epilepsy that doesn't respond to meds. Also, from what I've read, the ketogenic diet is much more restrictive than Paleo. 2 years old is very young to be on such a rigid diet. You also want your doctors to at least agree that it's the last option and work with you on it.

My daughter takes Epival ( the drug you mentioned) right now, and it is okay, no harsh side effects. The seizures are not dangerous in and of themselves. What kind of seizure was it? My daughter has tonic clonic, complex partials, simple partials, and subclinicals. They are only dangerous if they last more than 20 minutes, or she walks off with a complex partial, or she goes into status epilepticus. I would, now, try the ketogenic diet before the surgery, but only because it's my last option, and I know her pediatrician (who's the best doctor ever) would support me. Also, she's almost fourteen, and can help make the decision.

Either way, while I know it can be scary news, please do not get scared. Try the more conservative treatments first, and get in touch with your local epilepsy support group for help and info.

Oh sorry, you had other questions. The only things I've noticed that actually trigger her seizures are stress and fevers. Other than that, they have always been totally random. And no, I've not used any naturopaths, nor would I.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 11, 2012
at 11:09 AM

If my daughter begins having regular seizures, then yes, I will try anything (including the keto diet) before I put her on medication. Having said that, I wouldn't start this tomorrow because it is highly restrictive and may not be necessary. After all, she had just one seizure so far. I want to focus on other measures first (eating paleo is one of them) as I gather more and more information on the subject. I value everyone's opinions though - thank you

16e617676c5ac710e5235e0b773edc0b

(2640)

on November 10, 2012
at 11:34 PM

I'm confused as to why anyone (especially on this site) would say to wait on trying a ketogenic diet when pretty much everyone on the planet could benefit from one. It's not "extreme", it's a lower carb paleo diet. If I had a child with epilepsy I would go straight to a ketogenic diet and not ever go back. There is no question in my mind that's the right thing to do.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:44 AM

(cont'd)are actually scientists, specialists in a field of science that is just not going to be represented on this site. Or most sites. And that's not a swipe at the people here, but whatever expertise people have here simply doesn't extend to the treatment of complex neurological disorders. It just doesn't. She should seek out parents and children through an epilepsy support group in her area.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:39 AM

Because it's the brain, and yes, that is rocket science. They actually know more about the universe than they do the brain, it IS that complex. And since you don't have a child like mine, I'm afraid that I don't give your opinion much weight. I don't mean that to be rude, but I hae 14 years experience with this, and am way more versed in it than most people. A ketogenic diet for a young child is not a first course of action. I am an adult, I can make decisions about my diet and health. I hae a responsibilty to my daughter to pursue her treatments in ways that are supported by those who

61f9349ad28e3c42d1cec58ba4825a7d

(10490)

on November 11, 2012
at 12:24 AM

Ketogenic diets for epileptic children have been known to adversely affect normal growth. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?pagewanted=all

61f9349ad28e3c42d1cec58ba4825a7d

(10490)

on November 12, 2012
at 01:37 AM

Thanks! I enjoyed it myself. I agree - I wouldn't RUSH to the ketogenic diet, but I would keep it in mind in combination with drugs and any other treatments. I'm not about pushing pills on children, but we're talking about epilepsy - something that is definitive and can be fatal or cause brain damage - not something that is subjective, self-diagnosed, or over-diagnosed like a kid with ADHD. Also, it's a KID. They are still developing and trust their caregivers to make cautious decisions. I'd experiment on myself before playing fast and loose with a developing child's diet.

Cc3ce03985eac5ebcbb95fc2329f13b0

(7370)

on November 11, 2012
at 01:58 AM

That was a good article, Luckie. They had a kid right off the charts with seizures and worked with their doctors and a special dietician. That would be the only way I'd pursue it.

1
D4d0165711da841beafe7292b710a532

on November 10, 2012
at 03:37 PM

im seconding above. i'm a severely handicapped special-ed teacher so lots of my students have seizure disorders. through schooling and experience a very low carb diet (under 25g usually) that is very high in fat controls the students seizures REALLY well. at the same time- if those students on a keto-diet sneak food from other kids the insulin response can trigger a seizure occasionally. stress, focal problems, and diet can all trip seizures... but im not sure why exactly the brain Fritz's like that. good luck getting everything under control!

1
0d2b1ff450021cca6683e4cecf2d6aec

on November 10, 2012
at 03:01 PM

I am not a doctor -- but people have had success with Ketogenic Diet and Epilepsy. Google it

0
61f7c1630bd769b710ec031419e52032

on November 14, 2012
at 09:25 AM

Would search for aything relevant, and will let you know, best of luck :)

0
C4f1a0c70c4e0dea507c2e346c036bbd

on November 12, 2012
at 12:39 AM

My sister is 21 and still has them. All ears on this thread. She won't got keto either or give up sugar entirely.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 13, 2012
at 12:18 AM

How old was she when she was diagnosed? And how often does she get seizures now? I'm assuming she is on meds?

C4f1a0c70c4e0dea507c2e346c036bbd

on November 15, 2012
at 03:20 AM

Well I try to get her to eat paleo during meals but she still eats bread. She is special needs, but even normal people don't understand why wheat is bad. People tend to glaze over when you mention lectins, and glutens. If Norman Reedus or Josh Jackson were explaining paleo she might pay attention. She loves those two actors.

C4f1a0c70c4e0dea507c2e346c036bbd

on November 13, 2012
at 04:17 PM

Tegeratol and lacmicatal. She has had seizures since she was 6 I believe. Used to be grandmals now short 5-10 second ones.

B2cadbf43bddfbb523b8a53155656188

(548)

on November 14, 2012
at 12:49 AM

And she has never tried eating a clean diet?

B2cadbf43bddfbb523b8a53155656188

(548)

on November 18, 2012
at 11:17 PM

Yes, I'm sure if the media were involved more (including celebrities) then everyone would listen! I have put my daughter on a paleo diet (although not ketogenic) and people look at us like we are from the moon when we mention that we are wheat-free.

0
C2630efabb5f82623d06dd9689a9368d

on November 11, 2012
at 11:46 PM

I am always astounded when I hear (or read) that so many doctors only recommend the Ketogenic Diet as a last resort -- when meds and surgery don't work.

I researched this diet extensively while writing my book, "HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases." One of the treatments I feature in my book is, indeed, the Ketogenic Diet. "HONEST MEDICINE" contains contributions by THREE parents, all of whom were DIScouraged by their children's doctors from trying the diet. In each and every case, their children got worse and worse, as more medications were tried. It was only when these parents finally insisted that their children be put on the diet that they got better. I urge you to read their stories in my book.

One of the contributors to my book is Jim Abrahams, the Hollywood writer/director/producer, who is responsible for a resurgence in the diet. His son Charlie suffered intractable seizures in the early 1990s as a baby. It was only after many combinations of drugs and one ineffective surgery were tried that Jim finally insisted that Charlie be put on the Ketogenic Diet. The diet cured Charlie's epilepsy. You may learn more about his story both in my book and on Jim's website (www.CharlieFoundation.com).

I urge you to consider the diet earlier, rather than later. After all, it is FOOD--a much safer option than drugs and/or surgery.

Thanks so much. Julia Schopick www.HonestMedicine.com

B2cadbf43bddfbb523b8a53155656188

(548)

on November 18, 2012
at 11:20 PM

Thank you, I will definitely pick up your book. I am currently reading Patricia Murphy's "Treating Epilepsy Naturally" and I remain hopeful.

0
D10d943d2a41331bdc8c0539ed36cd06

on November 10, 2012
at 11:13 PM

There was something on TV here (UK) about this a month ago, i didn't catch the specifics but i think you can watch the episode here http://foodhospital.channel4.com/episodes/series-2/episode-six/

0
F040035b2008ec80b205481afbd39ad4

on November 10, 2012
at 09:03 PM

Two links below that may be of significant interest to you; the first aired this year, the second 20 years ago, and both cover the treatment of seizures with a ketogenic diet:

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