RE: hips, leg length differences

[Guest guest]

Cathie,

I am going to pass this on to ann Girardi, the PT that saw when she

was here. Is that ok? She might have something to add...

hips (and feet) are her " thing " .

pam

hips, leg length differences

erika sees her orthopedist agin next week. she has a leg length differnce

that is affecting her walking. she currently wears a lift. 2 years ago, she

had hip surgery, an osteomety to cover the hip better, but also b/c the left

side of her pelvis is turned up, smaller, different from her right. the

results make one leg longer, so he removed part of the pelvis and it brought

the

femur up higher to give her more length. well it didnt make much of a

difference. Now, the differnces in the leg length does affect her walking, the

other knee turns in b/c it is longer and her posture is not good, it adds to

her

scoliosis issue.

The dr is considering removing the growth plate in the femur to allow the

other leg to catch up. they will do another bone age to see how much more she

will grow. timing is very important.

We are not thrilled with us idea, will the surgery make enough of a

difference to make it worth it.

So, questions, are hip problems of this nature commonin CHARGE? how many

others have ahd to address these problems w/surgery.

We have always know her hips were not " normal " Her orthopedists has never

seen hips like hers. He is wonderful and really wants to help to walk.

I would like to be able to pass on any other CHARGE hip issues.

Thanks

Cathie, mom to 11 yr

************************************** See what's free at http://www.aol.com.

[Guest guest]

Cathie,

I am going to pass this on to ann Girardi, the PT that saw when she

was here. Is that ok? She might have something to add...

hips (and feet) are her " thing " .

pam

hips, leg length differences

erika sees her orthopedist agin next week. she has a leg length differnce

that is affecting her walking. she currently wears a lift. 2 years ago, she

had hip surgery, an osteomety to cover the hip better, but also b/c the left

side of her pelvis is turned up, smaller, different from her right. the

results make one leg longer, so he removed part of the pelvis and it brought

the

femur up higher to give her more length. well it didnt make much of a

difference. Now, the differnces in the leg length does affect her walking, the

other knee turns in b/c it is longer and her posture is not good, it adds to

her

scoliosis issue.

The dr is considering removing the growth plate in the femur to allow the

other leg to catch up. they will do another bone age to see how much more she

will grow. timing is very important.

We are not thrilled with us idea, will the surgery make enough of a

difference to make it worth it.

So, questions, are hip problems of this nature commonin CHARGE? how many

others have ahd to address these problems w/surgery.

We have always know her hips were not " normal " Her orthopedists has never

seen hips like hers. He is wonderful and really wants to help to walk.

I would like to be able to pass on any other CHARGE hip issues.

Thanks

Cathie, mom to 11 yr

************************************** See what's free at http://www.aol.com.

[Guest guest]

Cathie,

I am going to pass this on to ann Girardi, the PT that saw when she

was here. Is that ok? She might have something to add...

hips (and feet) are her " thing " .

pam

hips, leg length differences

erika sees her orthopedist agin next week. she has a leg length differnce

that is affecting her walking. she currently wears a lift. 2 years ago, she

had hip surgery, an osteomety to cover the hip better, but also b/c the left

side of her pelvis is turned up, smaller, different from her right. the

results make one leg longer, so he removed part of the pelvis and it brought

the

femur up higher to give her more length. well it didnt make much of a

difference. Now, the differnces in the leg length does affect her walking, the

other knee turns in b/c it is longer and her posture is not good, it adds to

her

scoliosis issue.

The dr is considering removing the growth plate in the femur to allow the

other leg to catch up. they will do another bone age to see how much more she

will grow. timing is very important.

We are not thrilled with us idea, will the surgery make enough of a

difference to make it worth it.

So, questions, are hip problems of this nature commonin CHARGE? how many

others have ahd to address these problems w/surgery.

We have always know her hips were not " normal " Her orthopedists has never

seen hips like hers. He is wonderful and really wants to help to walk.

I would like to be able to pass on any other CHARGE hip issues.

Thanks

Cathie, mom to 11 yr

************************************** See what's free at http://www.aol.com.

[Guest guest]

Great Pam, thanks, appreciate any and all information!

I will try to call you again today, its been a busy week, special olympics

is this weekend, they had final practice yesterday with a big celebration at

the High School w/our HIgh School Track Team! Some administrators and School

Board Members showed up!

Cathie J

************************************** See what's free at http://www.aol.com.

[Guest guest]

Michele,

Yes, isnt that amazing when you hear " I have never seen this before " ! and it

is a well known doctor with high credentails!. is hyper toned b/c of

CHARGE, but hyper toned on one side from the 2 cardiac arrests and the blood

pressure arrest. Her PT who has been with her since 6 months old, has also

" never seen anything like it!)

Cathie, mom to 11 yr

************************************** See what's free at http://www.aol.com.

[Guest guest]

Cathie-

All I can say is how frustrating it is to be the one that the dr has never

seen the likes of. We are facing the same with Aubrie's hips and

hyperflexibility throughout her body. Dr's never seen anyone who is as

loose as she is. Not very comforting. And leaves us with no options or no

prediction for the future.

Sharing in your confusion and frustration.

Michele W

Aubrie's mom 9 yrs

[Guest guest]

Thanks , I apprecaite your input. has scoliosis and hip

problems as well.

I am afraid to removing the growth plate, (also timing is a big issue) we

are having the bone age, scan's etc again tomorrow b/c the time would be very

soon. However, has been set back so many times, hip surgery, casting,

releases, not to mention so many other surgeries, heart, eyes, ears etc. We

are finally making progress, then another surgery sets her back.

However..........., if this is going to prevent her from becoming an

independent

walker??????????????????

well, tomorrow we will get more answers, I will ask about the " drilling of

the growth plate " as well.

thanks again

Cathie

************************************** See what's free at http://www.aol.com.

[Guest guest]

Cathie,

I don't know anything about orthopedic issues in CHARGE, but I have gone through

the length discrepancy myself. I had an inch and a half difference in my legs.

I wore lifts both in my shoes and eventually on the outside. I eventually had

my growth plate drilled when I was th 4th or 5th grade. There was a very small

window for the surgery. We had a choice of three days to do it. It was the

best thing that could have happened. The difference in length was causing

scoleosis and problems with my hips. Had we not done the surgery I would have

lost the ability to walk. There was a long recovery (6 weeks on crutches and

lots of pt) but it was well worth it. I don't know what 's situation is

but I thought I'd share my story with you. If you have any questions about the

procedure, feel free to ask!

~

Mom of Jack (7mo. CHARGEr)

hips, leg length differences

erika sees her orthopedist agin next week. she has a leg length differnce

that is affecting her walking. she currently wears a lift. 2 years ago, she

had hip surgery, an osteomety to cover the hip better, but also b/c the left

side of her pelvis is turned up, smaller, different from her right. the

results make one leg longer, so he removed part of the pelvis and it brought

the

femur up higher to give her more length. well it didnt make much of a

difference. Now, the differnces in the leg length does affect her walking, the

other knee turns in b/c it is longer and her posture is not good, it adds to

her

scoliosis issue.

The dr is considering removing the growth plate in the femur to allow the

other leg to catch up. they will do another bone age to see how much more she

will grow. timing is very important.

We are not thrilled with us idea, will the surgery make enough of a

difference to make it worth it.

So, questions, are hip problems of this nature commonin CHARGE? how many

others have ahd to address these problems w/surgery.

We have always know her hips were not " normal " Her orthopedists has never

seen hips like hers. He is wonderful and really wants to help to walk.

I would like to be able to pass on any other CHARGE hip issues.

Thanks

Cathie, mom to 11 yr

************ ********* ********* ******** See what's free at http://www.aol.

com.