RE: Re: Rhonda's previous advice/Ann

[Guest guest]

Ann,

We give Shan fresh vegetables with chicken, eggs, fish, turkey, beef. In

the past we have used for fats lactose free yoghurt cream, cheese, coconut

oil, olive oil, and butter. Presently we are using olive oil and sunflower

oil. We do a lot of stir fries. Fixing meals for school has been tricky.

We use to do a lot of cheese and butter but we recently dropped all dairies.

I've been mixing the oils in crushed hard boiled eggs making an egg salad.

She likes it. We also have been sending a stir fry to school which she has

been willing to eat cold. When we have hamburger we either make her some

small meat balls or mix her stir fried vegetables in the hamburger and call

it a casserole. One thing I've been doing a lot of this year is cook a

whole chicken in a crock pot for about 4 hours. I put a couple glasses full

of water in the pot with the chicken. It comes out very moist, falling off

the bone and tasting similar to turkey. Since Shan's diet is high in

protein (the Atkins part of her diet) this works out nicely for all of

us...she is able to eat the same food as the rest of us.

If I were in the U.S. right now I would look for hot dogs, sausage, and

bacon that were nitrate free and colour free. I know they exist. The

archives list a company where you can order these from. Check the

ingredients in the Mayo and make sure that it does not contain any

preservatives or colouring. Look closely at the butter and cheese if you

are using them. If it contains annatto natural colouring then discontinue

using them. We were in the U.S. 1.5 years ago and within the week of

arriving Shan began to get worse. We discovered the culprit was the

annatto. tto seems to be in all the cheddar cheeses and most of the

butter. We did find a colour free butter put out by Cream O Weber and we

dropped using cheddar and used the white cheeses instead (mozzarella).

It took a year being on the diet before we realized that Shan was lactose

intolerant. She was extremely fatigued as soon as she started the diet.

She never got her energy back. We quit using most dairy products in the

first year but looking back I'm guessing that the first months on the diet

when she had problems with digesting the fats and food (digestive enzymes

relieved this) wiped out her good bacteria in her gut. I did some reading

up on the Specific Carb Diet (SCD) for those with serious digestive issues

and decided to try giving Shan lactose free yoghurt cream that I made here

at home. Prior to making it I had begun to give her plain yoghurt from the

store and her energy immediately began to improve but she also began to have

an increase in sleep seizures. I switched over to the lactose free yoghurt

cream and her energy continued to improve and her sleep seizures decreased

to about 1 tonic clonic per week. After many months of using yoghurt cream

as her primary fat the sleep seizures began to increase. When we dropped

the yoghurt we began to go weeks and even a month without a known sleep

seizure.

Lately due to behaviour issues I have been researching the Fail Safe diet

for ADHD and implementing it. It does not allow aged cheese but it does

allow butter. I've decided it is time to eliminate all dairies and see if

we can get even better improvement in the sleep seizures. I have also

eliminated most of the foods that are high in salicylates and have had

behaviour improvement. Olive oil is a high salicylate but when I quit using

it (gave sunflower instead) her ketones suddenly dropped and we had an

increase in sleep seizures. I restarted the olive oil and things have

improved.

From the very first month of the diet after reading posts on this list 2

years ago about eliminating all the known possible seizure triggers, I

dropped the preservatives, artificial sweetners and colour agents. (I have

been using Stevia sweetner for the past 2 years.) By eliminating the known

possible triggers I could then look for any unknown ones if the seizures

persisted. There is always the possibility that the seizures will improve

or resolve by eliminating the known triggers.

I hope something in this can be of help to you.

Rhonda

Your letter was very informative and encouraging to me even though

you did not send it to me! I am very interested in what you are

feeding Shan. Every thing seems to have preservatives and artificial

sweetners! My son, , has been on the ketogenic diet since

1/27/04. For the first 3-4 weeks he did wonderfully. We were so

excited! Then he just seemed to have more and more seizures every

day, no matter what we did. He gets all the typical keto meals - hot

dogs, sausage, bacon, whipping cream, some saccarin (spelling?) and

lots of butter and mayonnaise. Could you give me some suggestions to

try? Also, did Shan have any other signs that she might have

problems with dairy, preservatives, and artificial sweetners? Did

she have rashes or anything else? does not have any other

symptoms, other than lots of myoclonic seizures. Thank you!

Ann