Re: Emerence's xray

[Guest guest]

- oh - how frustrating. Sounds like you are doing

everything you can though. Please keep us posted and let us know on

Monday what is going on. Did I mention they thought at the

convention Ian too had 1 cm leg discrepancy and when we saw Dr. H he

had none? It's clear he has something - you can tell by how he

walks! I can relate anyway. Talk to you soon I hope.

- H

>

> Well, this certainly has been a long haul with these xrays...it

> started with a bone age, then went to pseduoepiphyses of the

> metacarpals then this special xray last week wehre they put a

ruler

> down as part of the xray.

>

> Well, Dr. H measured her L leg shorter 2 conventions ago. Last

> summer her ortho said there was negligible asymetry but never told

> me which leg was longer (our genetics dr told me today that xray

> showed the R longer). WEll, the recent xrays show her LEFT is

> LONGER. Each bone, tibia and fibia, are both .2 longer than the

> same bone on right leg making her LEFT leg LONGER! However, her

> left butt cheek and left foot are smaller. So, the geneticist was

> concerned (by the way pseudoepiphyses were revconfirmed as

present,

> now a moot issue just another item to chalk up) as to why her LEFT

> was now supposedly longer. She is afraid either someone screwed

up

> somewhere along the line OR her left leg has grown longer. I

have,

> for almost 1.5 years, told every dr. EMErence's hip and shoulder

> (left side) do notl ook aligned and look higher on the left than

the

> right. IF her leg is really onger on the LEFT it woud explain this

> and I am guessing put her at serious risk for scoliosis! Somehow

I

> see more xrasy in our future. Our genetics doc sent the xrays

back

> for further review but she is out of town until Monday so I have

to

> wait until then.

>

> SIGH. have anice night!

>

> , mom to and Emerence

>

[Guest guest]

,

We are going through the same thing with . I've been telling her ortho

at Shriners that her right leg is longer. He just kind of shrugs me everytime.

It's like just because she doesn't have the extreme assymetry like he's used to

seeing then he's not concerned. I even had a PT come out and she measured from

head to toe. Diaper on and diaper off. Shoe lift on and shoe off. Sure enough

right is longer, not much, but enough to cause her back to be out of alignment

and possibly scoliosis in the future. When we got her a shoe lift you could

definitely tell the difference from when the shoe was on and when it was off.

We go December the 11th I believe for her 3 month check up with the Endo. I'm

sure they will do a bone age xray since she is 2 now. She had one at 6 months

and it showed 2 months and again at 18 months and it showed right at 18 months.

She started taking growth hormone in June and grew 3 inches from June to

September. This concerned the endo. so I'm sure

she will be checking her over well. will also be going in at the same

time to talk about his stim test. The endo. wants him on growth hormone also.

That is going to be so much fun! I can't even get him to take his ADHD medicine

let alone a shot! It's nice to have someone that has a daughter that has

similiar issues.

Tammy

wrote:

Well, this certainly has been a long haul with these xrays...it

started with a bone age, then went to pseduoepiphyses of the

metacarpals then this special xray last week wehre they put a ruler

down as part of the xray.

Well, Dr. H measured her L leg shorter 2 conventions ago. Last

summer her ortho said there was negligible asymetry but never told

me which leg was longer (our genetics dr told me today that xray

showed the R longer). WEll, the recent xrays show her LEFT is

LONGER. Each bone, tibia and fibia, are both .2 longer than the

same bone on right leg making her LEFT leg LONGER! However, her

left butt cheek and left foot are smaller. So, the geneticist was

concerned (by the way pseudoepiphyses were revconfirmed as present,

now a moot issue just another item to chalk up) as to why her LEFT

was now supposedly longer. She is afraid either someone screwed up

somewhere along the line OR her left leg has grown longer. I have,

for almost 1.5 years, told every dr. EMErence's hip and shoulder

(left side) do notl ook aligned and look higher on the left than the

right. IF her leg is really onger on the LEFT it woud explain this

and I am guessing put her at serious risk for scoliosis! Somehow I

see more xrasy in our future. Our genetics doc sent the xrays back

for further review but she is out of town until Monday so I have to

wait until then.

SIGH. have anice night!

, mom to and Emerence