[Ketogenic] Efficacy of Ketogenic Diet for Drug-resistant childhood epilepsies

KarenB

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KarenB

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Just a quick update that Jonathan is now 2 years and 2 months seizure free on the Ketogenic Diet. Over the past 2 years, we've been gradually tapering him off Zonegran -- he's now down to just 50/mg day, and if all goes well, we'll wave goodbye to Zonegran in August.

Jon's cholesterol and triglyceride levels are perfect right now. They rose a bit last year, so we just cut out most of the dairy fats (except some cheese), and now mainly use olive oil and mayo and MCT oil for his fats. So, a high fat diet doesn't necessarily cause unhealthy lipid levels. His electrolytes are also excellent -- reducing the Zonegran helped a lot with that.

We still struggle with behaviors (aggression, impulse control) and loss of speech and cognitive ability that are apparently a result of the seizures and/or seizure meds. We did see an improvement in these areas with his last Zonegran taper, so hoping once we get rid of it altogether that we'll get our little boy back. He's definitely a lot happier now and affectionate again. I only wish we'd started the diet earlier, before he suffered such damage from the seizures and the meds.
 

Bernard

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That's awesome Karen! Thanks for your continued updates (re: diets) on this thread. Good stuff. :)
 

Cint

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Good to hear from you, Karen, and thanks for the update! Keep us posted.
 

AlohaBird

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:hugs:

Big hugs to you and your whole family. You have been through a lot. It is so good to see you coming out on the other side.

Keep us posted on how the med tapering goes.
 

KarenB

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The problem with AEDs (why the diet is better)

In addition to lots of other nasty side effects, seizure meds can lead to brain damage and more seizures, especially if a child is on more than one AED

http://www.sciencedirect.com/science...10863012000560

1. Elevated HCY (Homocysteine) levels cause neuronal cell death,increased risk of seizures, neurotoxicity, cognitive damage and an increased risk of cerebrovascular disease in children and young adults.

2. In this study of elementary age children:
-children without epilepsy had an average HCY level of 5.5
-children with epilepsy but not on meds (newly diagnosed) had an average HCY level of 5.8
-epileptic children on anti-epileptic drugs had an average HCY level of 6
-Children on more than one anti-epileptic drug had an average HCY level of 6.7
-the longer children were on anti-epileptic drugs, the higher the levels of homocysteine.
 

Kgartner

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That link didn't work. Could you repost? I'd be very interested in reading the study.

Also, do you know at what level elevated HCY causes those increased risks? In other words, I'd love to also know if the increased levels observed in the study are clinically significant. I don't know if you have a separate study that discusses that, but I would also be very interested in that if you do.

Thanks!!
 

KarenB

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That link didn't work. Could you repost? I'd be very interested in reading the study.

Also, do you know at what level elevated HCY causes those increased risks? In other words, I'd love to also know if the increased levels observed in the study are clinically significant. I don't know if you have a separate study that discusses that, but I would also be very interested in that if you do.

Thanks!!
Here's the title of the study: Homocysteine, folic acid and vitamin B12 levels in serum of epileptic children
and the link http://www.sciencedirect.com/science/article/pii/S1110863012000560

I was also interested in how high the HCY levels had to be to cause issues in children. The normal levels in children of elementary age are lower than teens and adults. I did research and found that 5.2 (boys) and 5.3 (girls) is the mean level for children between ages 6 to 11 in the U.S. and that levels of 6.5 (boys) and 6.7 (girls) put then in the "90%" on the chart, which I suppose would be the high end of "normal", so perhaps numbers over 7 would be considered high?
http://jn.nutrition.org/content/133/8/2643/T1.expansion.html

Apparently, children on AEDs are not routinely tested for HCY levels. My son (age 11) has been on AEDs for 10 years, and I don't think he's ever been tested. So, even though it's common knowledge in the medical world that high HCY levels are associated with heart and vascular disease, diabetes, and neurological effects -- I haven't found many studies out there on the effects of high HCY levels on children (and how high is too high).

The study had a chart showing the length of time children were on AEDs and the effect on HCY levels. There was a steady climb, each year on AEDs, reaching an average of an HCY level of 8 or 9 after 12 to 14 years on seizure meds. The chart just below that showed a steady decrease in folic acid levels for children for each year they were on AEDs. A 3rd chart just below that one (which I found a bit hard to interpret) indicated that the higher the HCY levels, the lower the folic acid levels. And they also said that, surprisingly, the B12 levels were high in kids with high HCY levels. They theorized that long term use of AEDs had damaged the liver to the point where it was unable to store the B12 (so it was circulating in the blood, but apparently not being used??)

Here's another link on HCY levels in children taking AEDs

http://www.ncbi.nlm.nih.gov/pubmed/24799812
Folic acid supplementation on homocysteine levels in children taking antiepileptic drugs: A randomized controlled trial.

This study found increased homocysteine levels in autistic children, but the abstract didn't say how high the HCY was in kids with severe language delay --
The increase in homocysteine concentration was significantly and directly correlated with the severity of the deficit in communication skills
http://www.ncbi.nlm.nih.gov/pubmed/26070768

Here's another study on AEDs and HCY levels in children: http://www.psigen.cat/pdfs/Articles cientifics/23 EJPN 2000.pdf
It says that HCY levels were significantly increased in children on AEDs, and folate and B6 levels significantly decreased. Once again, the longer on AEDs, the higher the HCY levels. The higher the HCY, the lower the folate and vitamin B6 and B12 levels, especially in children with the MTHFR gene mutation (this mutation that affects about 10% of the population is more common in individuals with epilepsy, and also with migraines and autism)
 
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Emerald

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I am a teenager on the modified Atkins diet and it's been really beneficial. I've been on it roughly two months and my number of seizures a day have dropped from 15 to about 3 on a good day. So far, my seizures continue to get worse, but this is the best I've been since February of this year when I started seizing every day. I was diagnosed in May. My parents and I suspect I've been having seizures since I was five, but my doctors at that point in time weren't that good. The reason we think that is because when I was little, I would sit up at night and stare at the wall for a minute or so while being "asleep". Which is an awful lot like an absence seizure. Then, as I got older that stopped and I started getting faint a lot which is part of my current seizures. In May of last year I went to the ER with my worst seizure ever. My arms completely locked up and I couldn't walk and was sick to my stomach and feeling like I would faint. I wasn't seen for four hours and by the time I saw a dr, I was feeling much better. I know now that was a seizure, but the dr didn't think so because I didn't convulse! Fast forward a year and it starts happening every day. The diet has been much more effective than meds for me.
 
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