Re: Rhonda's previous advice/Ann/Rhonda

[Guest guest]

Rhonda,

Thank you, thank you for all the great information!! I printed it out

so I can keep it. We will definately try your suggestions.

seems to have more seizures after bacon and hot dogs so I have been

wondering about it for awhile. Thank you!

Ann

> 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