Re: (unknown)

August 20, 2003

Specialists

internist

neurologist

vascular

I live in a small town called MIdland Texas

the closest clinic is and White and I have to fly to get there

> oh god, I am so sorry you are so sick..........I know this drug is

dreaded by

> all but you sound as if you may need a short course of steroids to

get your

> inflammation down. Has Mr. Dr. mentioned?...also, what type of

specialist have

> you gone to?...if its just pulmonary, then you need to get to a

> rheumy..........

>

> Good luck, and feel free to ask any of us more questions, that is

what we are

> all here for

>

> Stacie

October 6, 2003

fer,

We live in ville, Fl but both me and my wife grew up in Coral Springs,

Fl.

I will have my wife , look at your email and see if she can recommend

anything for the taping or such.

Campanale, Sue(wife) 7½, na 8/18/99-->8/13/2002 (cHARgE)

Campanale

johncampanale@...

http://home.comcast.net/~briannacampanale

<><><><><><><><><><><><><><><><><><><><><><>

HEDGEBUILDERS---Protecting YOUR family and you......

www.hedge.org/sr/0074.htm

" Making the Internet Safe for Work and Play "

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(unknown)

Any CHARGE families in South Florida?

I'm in Pembroke Pines.

October 19, 2003

Hi, welcome to our family. It sounds like you've had a rough time lately with the sarc. I've had pulm sarcoidosis for 12 or 13 yrs, and like you, it started with my eyes. I had bilateral iritis--inflammation of the iris of both eyes, was wearing dark glasses inside with those wonderful dark glasses to wear over your glasses over the dark ones. Not a good thing.

For those of you who are new here, eyes and lungs get hit about 80% of the time with sarcoidosis. When you have iritis, not only are your eyes super light sensitive, but the chances of losing your vision to an acute glaucoma attack is very real. So pay really, REALLY close attention to your eyes.

Anyway, my sarc was put into remission after 3 1/2 years of prednisone, stayed quiet for 4 years, and came back with a vengence. It's now systemic and neuro and pulm and yep-- I have iritis.

So, my message to you is to be kind to yourself. Let your MD's know about the problems with balance, walking, etc. It still sounds like you're not under total control. I truly am sorry you had to find us, and know we will gladly answer questions, hold hearts, whatever you need to help you cope with this disease.

Compassionately,

Tracie

November 4, 2003

Glad she's doing well, hope you get home soon.

maria

(unknown)

> I just wanted to thank everyone for their support and prayers. Shanna

> is doing better, not to sure when we will get to go home. The Pulm

> group and the Cardiology group keep going back and forth. As of now

> her lungs are looking good and they are going to pull her chest tube

> maybe on Tuesday. Still just wondering if any one else had any

> problems with plural infusions?

>

> Again Thank you so very much.

>

> Diane

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

November 4, 2003

Hi Dianne,

Great to hear that Shanna is doing better.

The only experience I have had with pleural effusions was after Jack had

heart surgery. He had to be re-intubated for 5 days but has had no lasting

effects.

Elaine mum to Elise(11yrs) & Jack (6yrs) CHaRGE

Scotland

December 9, 2003

,

If her goal is to get them to give her pajamas, I would bring other clothes

and make her put those on and NOT give her the pajamas.

That's my .02 cents!

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

(unknown)

Hello!

finally saw the Endocrinologist yesterday, but I am not

completely settled with how he handled the situation. Her mother is

in now way concerned about her growth and everything that is

associated with her being a 23 year old and so tiny. The Endo says

that if she isn't concerned and doesn't want puberty to happen then

we should leave it alone. We will be doing a Dexa scan in the near

future and I have to take her for labs today, but it is very apparent

that he knows nothing about CHARGE. They are clueless. Her mother

is tired of the specialists and docs, although I am now the one going

to these appts. Also, we will be have ear reconstruction surgery

soon, as her ear infections are internal and no form of antibiotic is

helping.

has been potty trained since 21 and has recently been

having accidents at her appts to get them to give her pajamas. She

has become quite manipualative and seems to be getting worse.I take

her to the bathroom before hand and even put pullups on her, she

soaks right through. Any advice?

, friend to 23, CHARGE

December 9, 2003

hi

let her wear her own pjs to the appt - and get her a badge that says " i

dressed myself " ! :-P

that may not be what you want to accomplish? - 's idea of taking her own

spare clothes could work...

jo

----- Original Message -----

> has been potty trained since 21 and has recently been

> having accidents at her appts to get them to give her pajamas>

December 10, 2003