Our Story, E4/E4 for my 4 Year old child

[Stavia]

Rann you misunderstand me. I am completely supportive of your ketogenic protocol for your son's epilepsy. I would be doing the same for mine in your situation. However this forum has no experience of small children's response to such a diet. Paediatric metabolism differs from adult in many respects and I have concerns about applying our collective knowledge to your son. The raised TGs may not be an issue in a growing child. We have no experience of this on the forum. My gut feeling also is that a raised TC in a child might not be an issue for some years (if not forever) , but I am an adult doctor, not a paediatric one. And prof Noakes was one of my professors in the 80s. I support him 100%.

In response to investigations, there is unlikely to be a use to doing coronary calcium scans in a 4 year old as it takes years for any plaque to calcify. In FH I recollect soft plaque starts in the teens.

Your best source of information about lipid metabolism is Thomas Dayspring's website. He is one of the world's top lipidoligists and there are many detailed biochemistry lectures on his site.

I reference some basic information in my primer on the newcomers section.

In addition we had a forum interview with Dr Dayspring - the thread is easily found with a search of our site.

I do not live in America so cannot recommend a lipidologist.

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[Stavia]

I also recollect that I summarised hours of Dayspring's lectures for our members. Specifically looking at the e4 hyperabsorotion issues. You can find the thread by searching the site.

[rann]

Thank you Nancy, we are on strickt keto diet, keep our carbs lower than 20 grams a day... so not to many vegies and no fruits, certainly no grain.

[Nancy]

Ok. I see. That must be so difficult. Well, maybe add a few non starchy vegetables scattered throughout the day. Maybe a few raspberries in the yogurt wouldn't hurt, but I'm not the expert. I just know berries have less sugar than most fruit. Almond butter is another fat I eat that I forgot to mention.

[rann]

We do eat both under the low carb limitation, he loves almonds spread ! : )

[slacker]

I think our lipidologist (we didn't met one yet) reply would be something along the lines "Statins now! stop the diet!"
Would be surprised to get another answer, so I want to come as ready as I can (with citations).

Hi Rann-

In the US, the Crestor package insert indicates that the drug is FDA approved for children with familial hypercholesterolemia at age 7 or 8 (depending on whether they are homo- or heterozygous). You probably already know that So any lipidologist recommending a statin for a 4.5 yo is recommending off label use of this drug (in the US). I didn't look at the PI of any other statin, just crestor.

That being said, your child's lipid profile looks a lot different now than pre-ketogenic diet. If you look at various ketosis posts on this website (I know, they are all over), many members shoot for 0.6 - 2.0 (I am going from memory, which might not be completely accurate). So cutting back on the saturated animal fats for your child could be considered.

Good luck; you are trailblazing with a lot of heart.

[Julie G]

rann, you've likely done more research on this than any of us, but this paper suggests a BHB level between 2-4 mM seems to be the goal with seizure control in children; somewhat higher than the levels we typically shoot for here. Given your success with this approach without measuring levels, you're currently the expert on your child's tolerance level through your N=1 experimentation. I'm curious if you've been able to find a physician to support you in using this approach.

[slacker]

Rann;

Here's a link to a ketogenic program for kids with seizures at Johns Hopkins in Baltimore.

https://www.hopkinsmedicine.org/neurolo ... _diet.html