Re: Greetings( To )

January 1, 2003

DARLA,

My oh my. I think I would be exhausted with that many children too! I

admire you with out meeting you, for I am sure you must possess an

immense amount of fortitude!

We are located in central Minnesota. In between Duluth and Minneapolis.

We doctored in St at Gillette Childrens with Dr. Shanie Norberg. A

new neurologist. Terrific Doc. Trys hard! Saw Dr Berry at U of Mn.

1 x, Dr 1 x (kinda of a free lancing cowboy geneticist). He did her

biopsy. Saw Dr. Whiteman once also. Used the ICU at Childrens St and

Dr. with the MN. Epilepsy Group out of the hospital. That

hospital is incredible!

You mentioned that you have Mito symptoms as well as some of your other

children. Are you or any of them on the cocktail? If so what & doses.

When we saw Whitman in September, he said to wait until symptoms begin to

manifest in myself or Lily's sister, before starting any supplements. I'm

not so sure I want to wait. I had started Lily on Carnitine by myself

based on my own research. It proved to be very beneficial to her. Dr

Norberg started her on the Carnitor after we begin seeing her. It had an

even greater positive effect on her health. Dr Whiteman in his polite way

" chewed me out " for starting things on my own, empirically. I told him

that we had in common-wanting the best for Lily. Lets focus on that, not

that I didn't follow standard medical protocol.

So what are others out there doing regarding siblings that don't have the

obvious symptoms. Seizures but some similarities like milk allergies and

hypersensitivity to immunizations and low immune function?

Thanks for being out there, all of you. Blessing on all.

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