Nutritionist to address epilepsy?

[Anonymous]

Has anyone seen a nutritionist (like Kelly Dorfman) to address epilepsy? We are wondering if small dietary changes or supplements may help seizure control that so far is resistant to meds. I know about the ketogenic diet, but am hoping not to go down that path so wanted to see if there was an alternative (plus we still have medications we can try before resorting to ketogenic diet).

[Anonymous]

We are doing a light-ketogenic diet and still getting good results with our ASD child. We just increased the fats, decrased the carbs but we did not strictly cut the carbs. He is stimming less and learning better.

[Anonymous]

PP, we're about to try this, too. Our dd has epilepsy and likely ASD. although no one will diagnose it. Are you using a specific diet?

[Anonymous]

Not a specific diet,no. A spoon of olive oil first thing in the morning and then every few hours between meals.
About 5 spoonful per day amounts to 1/3rd of his daily calories. But he really loves olive oil and i suspect it might be placebo effect
It seems to be working with no harm so we are sticking at it

[Anonymous]

Interesting comment about the EVOO. I've heard of folks using a modified Atkins diet. Also, I have heard that adding minerals like magnesium can help. If I felt my ASD child had seizures, I would probably take her to see Dr. Richard Frye in Arkansas. He is probably the best published expert on seizures in autism in the US. Dana Laake in kensington is a very knowledgeable local nutritionist (ASD/MAPS certified). She may be able to offer some guidance from the nutritional perspective.

[Anonymous]

Hi

Both my daughter and I have difficult to control neurological problems. I have battled migraines for almost 40 years. My daughter has primary generalized epilepsy and Jeavons syndrome. She has tonic-clonic seizures, drop attacks and absence seizures. She is extremely photosensitive. Bright lights and flashing lights give her seizures. We are both on daily medications to help with these problems, but the problems persist.

My Neurologist recommended that I go on a glutamate and aspartate restricted diet (G.A.R.D.) to see if it would reduce the number of migraine headaches that I have. I have been on the diet for about a month. Since I do all the cooking, the family has gone on the diet with me. LOL I am feeling much better. Even better, my daughter is having far fewer seizures!!! She has gone from about 10 absence seizures a day with the occasional tonic-clonic and drop attack thrown in, to only having seizures two days in the last month. (1 short tonic-clonic and 6 short absence seizures that were triggered by unavoidable intense light.) Her Epileptologist is thrilled with how she has improved and strongly encouraged us to stick with the diet.

You can learn more about the G.A.R.D. diet at this web site if you are interested in learning more about it:

http://dogtorj.com/

There is a problem with the link that he has for nutritional information. Here is the correct link:

http://www.foodcomp.dk/v7/fcdb_namesearch.asp


This diet is HARD to follow. I had to buy a gluten-free cookbook and I have to cook everything from scratch! But the results are worth the work.

HTH.

me

[Anonymous]

Anonymous wrote:We are doing a light-ketogenic diet and still getting good results with our ASD child. We just increased the fats, decrased the carbs but we did not strictly cut the carbs. He is stimming less and learning better.

Technically you can't really do keto-lite, you are either in ketosis or you are not. To transition to a child onto a keto diet requires strict adherence to a carefully calibrated diet devised by a certified nutritionist / dietitian. There are many specialists at Childrens who can guide you, and help you keep track of ketone levels once your kid is in the zone. This really isn't something you can wing by increasing the child's fat intake.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We are doing a light-ketogenic diet and still getting good results with our ASD child. We just increased the fats, decrased the carbs but we did not strictly cut the carbs. He is stimming less and learning better.

Technically you can't really do keto-lite, you are either in ketosis or you are not. To transition to a child onto a keto diet requires strict adherence to a carefully calibrated diet devised by a certified nutritionist / dietitian. There are many specialists at Childrens who can guide you, and help you keep track of ketone levels once your kid is in the zone. This really isn't something you can wing by increasing the child's fat intake.

I wonder if they are seeing improvement because they have reduced the amount of free glutamate that the child is eating. (The glutamate in meats is bound so that less of it is absorbed by the body.) Processed foods and carbs, such as gluten containing breads, are very high in free glutamate. Before we tried the glutamate and aspartate restricted diet (G.A.R.D.) we consulted with a nutritionist and tried an aspartame free diabetic diet. My daughter improved on that diet, but she is doing much better with the G.A.R.D. We have not tried the ketogenic diet. Her doctors did not want us to do that diet because of her age (12). They said that they see too many school age children in the E.R., that cheated on the ketogenic diet while they were at school, then had severe seizures.

Me

[Anonymous]

I wonder if they are seeing improvement because they have reduced the amount of free glutamate that the child is eating. (The glutamate in meats is bound so that less of it is absorbed by the body.) Processed foods and carbs, such as gluten containing breads, are very high in free glutamate.
Me

My child has always been on a gluten free diet since 1 year old due to low wheat allergy. We did not see any improvement with that gluten/allergen-free diet and our allergist told us to just let him wheat if he wants to. He is not a big fan of wheat but he eats one serving of gluten or sugary food daily.

So with this oil rich diet (that we called light-ketogenic earlier) we dont restrict gluten. He also eats a huge egg-butter-creamcheese mix at breakfast so I dont attribute his improvement to olive oil only.

[Anonymous]

My mother recently went to Johns Hopkins Ketogenic Diet Center. I believe JH also has a pediatric epilepsy team that may use the ketogenic diet as well.