Re: Hip socket and leg surgery!

[Guest guest]

Hi, I have been meaning to respond to your first post. (annoying when no one

responds isn't it?) My daughter is now almost 9 and has had some of the surgery

you mention some years ago, for the same reasons. Your daughter is obviously

quite severe as is my daughter. It seems there are not many here as bad as some.

My Chloe can not walk, weight bear, sit, etc as she is low tone in her trunk and

varies from high to low tone in her limbs. She can not talk or communicate. She

can not take food orally due to risk of aspiration and is tube fed. She takes

topamax and lamotrigine for epilepsy. She started puberty about a year or so

ago. She is generally a happy little soul though.

Back to the question: Chloe had the operations to both legs where they are cut,

rotated and pinned to improve ball socket connection, but not the socket

alteration. She cannot talk but it was clear she was un-comfortable for a while

(in a hip spika does not help) but we have been assured it was all necessary

long term. However, whether due to the ops or not, she now has one leg

considerable larger than the other (5cm or so) Her breaking her leg 6 months ago

due to a seizure and being constrained in her wheelchair did not help. She had

to go in a hip spika again for 10 weeks.

Dom

Hip socket and leg surgery!

To: polymicrogyria

Date: Wednesday, May 12, 2010, 11:54 PM

My daughter is going to be 3 in july and we recently found out that because

she never bared weight her legs did not form right nor did her sockets. So now

they want to do a surgery where they cut the upper leg bone and place metal

plates and screws so it will form right. Then they want to cut a piece of bone

on each side out of her hips and add that piece of bone to the socket to make

them bigger. Has anyone had this expierience? Do the kids seem to be in a lot of

pain?

[Guest guest]

Thanks for responding. my daughter will be 4 in july. She can not talk or

communicate. She does not walk sit or bare weight due to the low muscle tone n

the trunk and it does very n the limbs. She also has a peg tube for feedings. It

is nice to be able to relate to someone. Iam a lil scared of the whole thing.

Re: Hip socket and leg surgery!

Hi, I have been meaning to respond to your first post. (annoying when no one

responds isn't it?) My daughter is now almost 9 and has had some of the surgery

you mention some years ago, for the same reasons. Your daughter is obviously

quite severe as is my daughter. It seems there are not many here as bad as some.

My Chloe can not walk, weight bear, sit, etc as she is low tone in her trunk and

varies from high to low tone in her limbs. She can not talk or communicate. She

can not take food orally due to risk of aspiration and is tube fed. She takes

topamax and lamotrigine for epilepsy. She started puberty about a year or so

ago. She is generally a happy little soul though.

Back to the question: Chloe had the operations to both legs where they are cut,

rotated and pinned to improve ball socket connection, but not the socket

alteration. She cannot talk but it was clear she was un-comfortable for a while

(in a hip spika does not help) but we have been assured it was all necessary

long term. However, whether due to the ops or not, she now has one leg

considerable larger than the other (5cm or so) Her breaking her leg 6 months ago

due to a seizure and being constrained in her wheelchair did not help. She had

to go in a hip spika again for 10 weeks.

Dom

Hip socket and leg surgery!

To: polymicrogyria

Date: Wednesday, May 12, 2010, 11:54 PM

My daughter is going to be 3 in july and we recently found out that because

she never bared weight her legs did not form right nor did her sockets. So now

they want to do a surgery where they cut the upper leg bone and place metal

plates and screws so it will form right. Then they want to cut a piece of bone

on each side out of her hips and add that piece of bone to the socket to make

them bigger. Has anyone had this expierience? Do the kids seem to be in a lot of

pain?

[Guest guest]

I ment she is 3 and will be 4

Re: Hip socket and leg surgery!

Hi, I have been meaning to respond to your first post. (annoying when no one

responds isn't it?) My daughter is now almost 9 and has had some of the surgery

you mention some years ago, for the same reasons. Your daughter is obviously

quite severe as is my daughter. It seems there are not many here as bad as some.

My Chloe can not walk, weight bear, sit, etc as she is low tone in her trunk and

varies from high to low tone in her limbs. She can not talk or communicate. She

can not take food orally due to risk of aspiration and is tube fed. She takes

topamax and lamotrigine for epilepsy. She started puberty about a year or so

ago. She is generally a happy little soul though.

Back to the question: Chloe had the operations to both legs where they are cut,

rotated and pinned to improve ball socket connection, but not the socket

alteration. She cannot talk but it was clear she was un-comfortable for a while

(in a hip spika does not help) but we have been assured it was all necessary

long term. However, whether due to the ops or not, she now has one leg

considerable larger than the other (5cm or so) Her breaking her leg 6 months ago

due to a seizure and being constrained in her wheelchair did not help. She had

to go in a hip spika again for 10 weeks.

Dom

Hip socket and leg surgery!

To: polymicrogyria

Date: Wednesday, May 12, 2010, 11:54 PM

My daughter is going to be 3 in july and we recently found out that because

she never bared weight her legs did not form right nor did her sockets. So now

they want to do a surgery where they cut the upper leg bone and place metal

plates and screws so it will form right. Then they want to cut a piece of bone

on each side out of her hips and add that piece of bone to the socket to make

them bigger. Has anyone had this expierience? Do the kids seem to be in a lot of

pain?