New Here - Mom of 12 Year Old Boy

[Daisy0400]

My son has very difficult to control seizures due to frontal lobe epilepsy/nocturnal seizure disorder. He is on numerous medications including Sabril, Topomax, Keppra and Frissum and he still continues to go into 'status' seizures. Hence, we have now started him (age 19) on the Ketogenic diet, but we have had difficulty finding experts regarding this diet and factors to consider, hence, if you body is running on fats as a fuel/energy source, is it possible or impossible to become hypoglycemic? The reason I ask is that diabetics require constant a regular supply of blood sugar to maintain stable, what happens to people who do not use sugar as their energy source, is it possible that this may trigger seizures?

Thanks, Daisy

[Dutch mom]

Hello Daisy,

A keto kid's body and brain are burning on fats instead of carbs. In the beginning there's a risk for hypo's or acidoses (i.e. when ketosis is too deep), that's why kids are usually admitted in a clinic or hospital to get started on the diet. Goals on the diet are blood sugar about 3.5 and ketosis 4+ to have optimal seizure reduction/seizure control. Too high blood sugar is not associated with good diet effect as well as too low ketosis isn't. You can buy a monitor to check ketones as well as blood sugar AT HOME, it's used to finetune the diet and to check when kids are ill.

Check out these:

http://site.matthewsfriends.org/inde...osis-look-like

http://site.matthewsfriends.org/uplo...loodmeters.pdf

http://site.matthewsfriends.org/inde...medical-papers

[RobinN]

i remember i once read about hypoglycemia being a possible trigger. i ran it by my doc. they did all the blood tests. nothing came of it. all normal. but its worth a shot. just ask the doc to do *ALL* the blood tests. i had to specifically ask for it becuase they dont do it automatically.

All of Rebecca's blood tests came back normal too. It wasn't until a paramedic clocked her blood glucose at 32 that I finally was taken seriously. You need to have a 3 - 4 hour glucose tolerance test to see if the blood sugar drops. Even then.. the epileptologist didn't know how to manage her care. The endocrinologist has been more helpful in this area. (yet we had seen a ped-endo and he was clueless as to how to treat seizures).

I think it takes intuition, a bit of knowledge, and clear indications (such as seizures being at similar times of the day). My daughters seem to be associated to reactive hypoglycemia. Healing the organs (liver, GI,) and limiting foods that increase insulin levels, is improving her seizure control.

I believe the "tests" can only go so far... trial and error was our first indication.