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hi,my son was 5 years old on March 14th,hope the survey goes

well?sarah.

In CHARGE , " paulus_khouri " <paulus.khouri@g...>

wrote:

> I thinking of doing a survey, can everyone like down the age and

> gender of each child that has change syndrome. It would be quite

> cool to see how many of us there are.

>

> ps Im guessing that the CHarge syndrome conference will be July,

> anyone know the four one one, eg the application etc

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Guest guest

Well I'm not a child but....I am 48 years old and female.

Kay

survey

> I thinking of doing a survey, can everyone like down the age and

> gender of each child that has change syndrome. It would be quite

> cool to see how many of us there are.

>

> ps Im guessing that the CHarge syndrome conference will be July,

> anyone know the four one one, eg the application etc

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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  • 3 weeks later...
Guest guest

We didn't hear what you found out when you took to the Endo.

survey

>

>

> > I thinking of doing a survey, can everyone like down the age and

> > gender of each child that has change syndrome. It would be quite

> > cool to see how many of us there are.

> >

> > ps Im guessing that the CHarge syndrome conference will be July,

> > anyone know the four one one, eg the application etc

> >

> >

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

> >

> >

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Guest guest

grew some. She is now 51 pounds and, I think, 43 and 11/12 inches

tall. She gained about 8 pounds and almost 1 1/2 " . Doctor said not great,

but better. He keeps wanting to see the " spectacular growth " some achieve

with GHT. At least she is growing. (I don't think she would without the

growth hormone.) He said to up the dose and we were thinking it would be a

bigger jump: We went from .26 to .27 units - whoopee! We thought maybe it

would jump to .3 or something. Oh, well, must not take much to increase a

good bit.

Took her to the dorm tonight and she seemed happy to be back at school

following her Spring Break!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (13 yrs.) and (10 yrs. CHARGE+)

Re: survey

We didn't hear what you found out when you took to the Endo.

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