Re: Krista Bach Dr. Appointment.

[Guest guest]

Krista-

Remind me why you had this testing done -- were you having symptoms or

was it just a routine check? I apologize if you've already told us and

I should know. I'm so dead tired and my brain is fried -- but I am

still trying to keep up. We see the endo in Nov for the first time so

all of the hormone, growth, bone density, etc is new to me.

Michele W

Aubrie's mom

[Guest guest]

Michele,

Glad to hear that the cast is off and most of this is behind you.

I was reading about Krista's bone density issue. Sorry to hear that it has

progressed to osteoporosis.

Karlee had a bone density test upon returning from the last conference. Her

test showed her density was not where it needed to be.

She takes calcium. I took her to physical therapy to get help with weight

bearing exercises. They gave us some good exercises that made efficient use

of time. We still had time being loyal to doing them consistently.

Recently a fitness center opened in our little town. The physical therapist

suggested this for Karlee.

It has worked out great. I have the fitness person works directly with

Karlee 2 times a week. Her strength has improved as well as her

flexibility!

I'm hoping that Karlee will be able to avoid the osteoporosis issues.

from IL (Karlee 16 years)

Re: Krista Bach Dr. Appointment.

>Krista-

>Remind me why you had this testing done -- were you having symptoms or

>was it just a routine check? I apologize if you've already told us and

>I should know. I'm so dead tired and my brain is fried -- but I am

>still trying to keep up. We see the endo in Nov for the first time so

>all of the hormone, growth, bone density, etc is new to me.

>

>Michele W

>Aubrie's mom

>

>

>

>

>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-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

I had read in the CHARGE Manual that we are prone to Osteoporosis, and since

I've never had a bone density test done before I decided to have it checked out.

I have to have a follow up a year from now, to see weather I have gotten worse

or better.

Sincerely yours; Krista.

Michele Westmaas wrote:

Krista-

Remind me why you had this testing done -- were you having symptoms or

was it just a routine check? I apologize if you've already told us and

I should know. I'm so dead tired and my brain is fried -- but I am

still trying to keep up. We see the endo in Nov for the first time so

all of the hormone, growth, bone density, etc is new to me.

Michele W

Aubrie's mom

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-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

-

Great that Karlee is proactive about the bone density issues. As soon

as Aubrie is old enough, I'll have to take her to Curves with me for

strength and weightbearing exercises.

Michele W

[Guest guest]

Krista-

Thanks for clarifying. Aren't you glad for the info in the Manual and

from the ongoing work of the specialists? Without it, we'd all be

fighting things as they come instead of working in advance to avoid things.

Michele w