and Sue

[Guest guest]

:

>>>My comments do not in any way effect or change yours so why do you

feel the need to stress so strongly that you were treated differently than

I <<<<<

?

No they don't Chrissy and I think my post was clear that they do not. I

completely respect your telling of your experience . So, do me the same

courtesy and respect me telling mine. You did not have a good experience

and felt that you wanted to share that in this forum. I did have a good

one and I wanted to share that as well. That's what makes the world go

around, as you said, and that is what makes this list informative and

interesting.

>>>>BTW, what is it about this list-?????????----you all seem to take this

all so

personally? <<<<<<

Nope , I don't take it personally. Just wanted to put my 2 cents

in that we had a good experience so people can hear different opinions and

make up their own mind.

..>>>>> I had no idea that simply stating

factual experiences would create so much controversy.<<<<<<

, I don't see the controversy. perhaps you are reading too much

into this discussion.

____________________

Hi Sue, First of all I am glad you have such great experiences with Dr.

Haas. As for Dr. Shoffner, he is VERY CUTE! But absolutely there are

other doctors out there worthy of people's respect. We chose him because

he is who our geneticist and dysautonomia doctor sent us to . However, in

the past our geneticist had consulted with someone from UCSD - can't

remember his name - and he was helpful. As well Dr. Cohen has spoken to

our doctors here during Zachary's most recent admission and I am

tremendously grateful for the help he offered to them without even having

Zach on his case load. You know, I think that what needs to happen is more

people like you need to speak up and say what other experiences you have

and I am sure we will then learn a lot about some of the other mito docs.

Anne, mom to

Brittany,12, soccer star, and a huge help

Zachary,7, complex 1 and 4, G tube, J tube, Central line for TPN/lipids,

smart and funny

Abby,6, sweet, funny, suspected mito

, 26 months , complex 1 and 4, G tube, J tube, Central line for

TPN/lipids, just walking and can say NO