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oops, forgot to spell check :0) ... it's still brilliant no matter how

you spell it ;0)

Jo

Joanne Maslin wrote:

>wow, brillant news!

>Jo

>

> Mark wrote:

>

>

>

>>We just got home from the orthopedist, and he has dismissed Sara and

>>the diagnosis of congenital hip displacement!!

>>

>>

>>

>>

>

>

>

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Great news

Kay

hips

>

>

> We just got home from the orthopedist, and he has dismissed Sara and

> the diagnosis of congenital hip displacement!! He thinks the

> radiologist was maybe a little overzealous. She was a

> little " crooked " but within normal range for her age! We are

> thrilled & had to share!

> Mark mom to Sara 8 months

>

>

>

>

>

>

> 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!

>

>

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I have never heard of malrotated hips until recently. Patty is hypotonic

which means her muscles are very loose and weak. Parts of her body are worse

than others with one of them being her knees. She has to do excersises to keep

the muscles strong or her kneecaps pop out.

Ask about physical therapy.

Bonnie

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I think that loose joints in general are common in CHARGE. It is not

normal for your hips to go outwards to the front. That's how I knew

something was very wrong with Aubrie's. The ball of her femur (the top

of the leg bone that goes into the hip joint) was visible from the front

of her hip area. I can't do anything to get access to the ball of my

femur. It is enclosed completely in my hip socket. Hers was not at all

enclosed in the socket. The socket was shallow and allowed the ball of

her joint to move freely.

Aubrie's hips didn't hurt or bother her. I think that the loose

ligaments allowed her hips to move in that way without discomfort. But

she would have developed arthiritis and became unable to walk if we'd

left it. Over time, the bones would have rubbed against each other so

much that it would have begun to hurt.

Aubrie's natural way of standing before surgery was with her toes

pointing outward -- I mean, completely out to the sides. Now, she

stands with her toes forward.

I guess it wouldn't hurt to have an orthopedic dr check it out just to

be sure that the amount of movement you have is ok.

Michele W

Aubrie's mom 6 yrs

Belinda wrote:

> is displaced or loose hips soemthing common in charge? i was lying in bed

> the other day, and noticed i lie down with my hips going outwards, or is

> that normal? lol i noticed if i wanted to put my legs right i had to open

> them up to balance them, its not something that bothers me, but ive been

> wondering about it lately, i i had to go to the physio few weeks ago and

> they said my hips are too mobile for my knees so my kneecap keeps

> maltracking...

> hips

> >

> >

> >>

> >>

> >> We just got home from the orthopedist, and he has dismissed Sara and

> >> the diagnosis of congenital hip displacement!! He thinks the

> >> radiologist was maybe a little overzealous. She was a

> >> little " crooked " but within normal range for her age! We are

> >> thrilled & had to share!

> >> Mark mom to Sara 8 months

> >>

> >>

> >>

> >>

> >>

> >>

> >> 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!

> >>

> >>

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thanks for your reply, the physio said i walk sorta with my feet turned out,

im not sure if my hips turn out too much tho...i probalby should go to a

orphapedic, its not bothering me alot tho atm, and i dont wan to have any

surgery if i had to lol, my shoulder joints are already messed up, i like my

hips how they are at the moment :)

Belinda

hips

>> >

>> >

>> >>

>> >>

>> >> We just got home from the orthopedist, and he has dismissed Sara and

>> >> the diagnosis of congenital hip displacement!! He thinks the

>> >> radiologist was maybe a little overzealous. She was a

>> >> little " crooked " but within normal range for her age! We are

>> >> thrilled & had to share!

>> >> Mark mom to Sara 8 months

>> >>

>> >>

>> >>

>> >>

>> >>

>> >>

>> >> 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!

>> >>

>> >>

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