Re: Dysautonomia----- Update!!!

[Guest guest]

Kathy,

Thanks for the kind words... You guys are always there

when I need you!! I am not sure why it took so long,

from what Dr.Frim said that is really rare for

Dysautonomia from where her lesion is, usually it is

found from brain injuries.. Chiari, TBI..etc.

He said he consulted with Mclone to see if this is

common among Spina Bifida, and he said he has never

seen it. I think Frim wanted to rule out everything

before he gave us that diagnosis..

Our address is not listed on the site, but I will put

it on there...thanks!!

Tommi

www.caringbridge.org/visit/amandapeters

--- DK Moulton wrote:

> Hi Tommi,

>

> I'm so sorry she's in a rehab - that's got to be so

> tough on her - all of you. But, I am glad you

> finally have an answer. Did they say why this took

> so long to figure out? Is this diagnosis a tough

> one for most that have it (to be diagnosed.) You

> have all been through so much with this - I don't

> know a thing about this condition but hopefully I

> can find time tonight to learn something about it.

>

> I'm hoping your site has an address where I can send

> a card!

>

> Kathy

> Dysautonomia----- Update!!!

>

>

> Hell all,

>

> After a million days in the hospital... Not really

> a millionm, but 76

> longgggg days. has moved to rehab. She is

> not happy about being

> her, but it is for the best. Anyhow, during her

> stay the NSG did not

> find a leak. And, her ICP is goofy but not enough

> to treat. So, with

> close observation, and her blood pressure crazy

> insane.... She has

> been diagnosed with Dysautonomia. Here in Chicago

> there is not a

> doctor who speacilzes in treating Dysautonomia. So

> her NSG is working

> out the logistics, and referrals to get her out to

> Mayo Clinic.

> Hopefully this will help her. Just wanted to

> update everyone, and let

> ya'll know what we found out!

> Thanks a lot!!

> Tommi

> www.caringbridge.org/visit/amandapeters

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

________________________________________________________________________________\

____

Bored stiff? Loosen up...

Download and play hundreds of games for free on Yahoo! Games.

http://games.yahoo.com/games/front