Totally confused on bone age test and leg x-ray

[Guest guest]

Hi Everyone,

I am totally confused now! I just got back from taking to

get her first GH shot today and thought while I was in that area I

would go across the street to Shriners to get a shoe lift on her

new shoes. I asked for a leg length X-ray since I've noticed that

she seems to be walking with a limp more than before. They also did

a bone age test.

Here were the results:

In June her leg discrepancy was 2 cm and now the x-ray shows no

discrepancy. Her bone age in June of last year was showing about 3

months(she was 7/2mos then) now it says 18 months and she just

turned 19 months. Should I be happy that everything is evening out

or should I be concerned that maybe she is advancing too quickly all

of a sudden. The nurse practioner at Shriners didn't seem

concerned , but did say that the way she was walking shows that she

MAY have a mild case of cerebral palsy. Of course, that is the

FIRST I've heard of anyone suggesting cerebral palsy so I'm trying

not to be too worried.

Will someone please tell me that I'm worrying over nothing. And do

all parents sometimes wonder if their really doesn't have RSS,

although 3 doctors have confirmed it, but only on from the

characteristics of it. She is not growth hormone deficient and all

blood tests came back normal.

Thanks,

Tammy

Mommy to 19 months RSS, GERD G-tube and ADHD and

idiopathic short stature.

[Guest guest]

Hi Tammy,

My son has RSS. His growth hormone levels are normal or low normal.

Most RSS kids have normal levels of growth hormone but need the extra

growth hormone via daily injections. This is why so many of us have

had a hard time getting insurance companies to approve growth hormone

for our kids. They test normal but are not growing. It is easier now

that the FDA has approved growth hormone for use in children who are

idiopathic SGA.

Who read the bone age x-ray? Was it the same person who read the last

one? Our perdiactric endocrinologist says that if you get 3 doctors

to read a bone age x-ray, you'll get 4 results. It is important to

have the same doctor read it.

Yes, many of us wonder if our kids really do have RSS or some other

obscure combination of a growth disorders that has not been discoverd

or named.

Often I wonder if I am just nuts. So far the prevailing opinion is

that I am.

I do not know about cerebral palsy so I cannot comment on that.

I hope this doesn't confuse you more.

Ken M

> Hi Everyone,

>

> I am totally confused now! I just got back from taking to

> get her first GH shot today and thought while I was in that area I

> would go across the street to Shriners to get a shoe lift on her

> new shoes. I asked for a leg length X-ray since I've noticed that

> she seems to be walking with a limp more than before. They also did

> a bone age test.

>

> Here were the results:

>

> In June her leg discrepancy was 2 cm and now the x-ray shows no

> discrepancy. Her bone age in June of last year was showing about 3

> months(she was 7/2mos then) now it says 18 months and she just

> turned 19 months. Should I be happy that everything is evening out

> or should I be concerned that maybe she is advancing too quickly

all

> of a sudden. The nurse practioner at Shriners didn't seem

> concerned , but did say that the way she was walking shows that she

> MAY have a mild case of cerebral palsy. Of course, that is the

> FIRST I've heard of anyone suggesting cerebral palsy so I'm trying

> not to be too worried.

>

> Will someone please tell me that I'm worrying over nothing. And do

> all parents sometimes wonder if their really doesn't have RSS,

> although 3 doctors have confirmed it, but only on from the

> characteristics of it. She is not growth hormone deficient and all

> blood tests came back normal.

>

> Thanks,

> Tammy

> Mommy to 19 months RSS, GERD G-tube and ADHD and

> idiopathic short stature.

[Guest guest]

Tammy,

The only question I can answer with any sort of knowledge is the one asking if

people worry that their child has ben misdiagnosed. I worry about this all of

the time. We have even seen Dr. H, who without a question, says Zoe has RSS.

Zoe has been doing so well (compared to her RSS peers) and I am very happy but

something is clearly not right (compared to her typically developing peers). I

worry that we'll see Dr. H this year and she'll say that she was wrong and Zoe

actually has XYZ and I'll freak out all over again. Yep, I am right there with

you.

BTW - Zoe has had a 2cm leg length discrepancy but seemed to have grown out of

it but now she is running kind of funny again. Maybe it is just growth spurts

and you'll see the length change from time to time.

Nope, you are not alone.

t_mayeaux wrote:

Hi Everyone,

I am totally confused now! I just got back from taking to

get her first GH shot today and thought while I was in that area I

would go across the street to Shriners to get a shoe lift on her

new shoes. I asked for a leg length X-ray since I've noticed that

she seems to be walking with a limp more than before. They also did

a bone age test.

Here were the results:

In June her leg discrepancy was 2 cm and now the x-ray shows no

discrepancy. Her bone age in June of last year was showing about 3

months(she was 7/2mos then) now it says 18 months and she just

turned 19 months. Should I be happy that everything is evening out

or should I be concerned that maybe she is advancing too quickly all

of a sudden. The nurse practioner at Shriners didn't seem

concerned , but did say that the way she was walking shows that she

MAY have a mild case of cerebral palsy. Of course, that is the

FIRST I've heard of anyone suggesting cerebral palsy so I'm trying

not to be too worried.

Will someone please tell me that I'm worrying over nothing. And do

all parents sometimes wonder if their really doesn't have RSS,

although 3 doctors have confirmed it, but only on from the

characteristics of it. She is not growth hormone deficient and all

blood tests came back normal.

Thanks,

Tammy

Mommy to 19 months RSS, GERD G-tube and ADHD and

idiopathic short stature.

---------------------------------

[Guest guest]

Ken,

It helps that I'm not the only one who has these feelings. No, it wasn't the

same doctor that read the results. I will be going back to the genectics doctor

who did the last one to get a second opinion

Tammy

kmerrith wrote:

Hi Tammy,

My son has RSS. His growth hormone levels are normal or low normal.

Most RSS kids have normal levels of growth hormone but need the extra

growth hormone via daily injections. This is why so many of us have

had a hard time getting insurance companies to approve growth hormone

for our kids. They test normal but are not growing. It is easier now

that the FDA has approved growth hormone for use in children who are

idiopathic SGA.

Who read the bone age x-ray? Was it the same person who read the last

one? Our perdiactric endocrinologist says that if you get 3 doctors

to read a bone age x-ray, you'll get 4 results. It is important to

have the same doctor read it.

Yes, many of us wonder if our kids really do have RSS or some other

obscure combination of a growth disorders that has not been discoverd

or named.

Often I wonder if I am just nuts. So far the prevailing opinion is

that I am.

I do not know about cerebral palsy so I cannot comment on that.

I hope this doesn't confuse you more.

Ken M

> Hi Everyone,

>

> I am totally confused now! I just got back from taking to

> get her first GH shot today and thought while I was in that area I

> would go across the street to Shriners to get a shoe lift on her

> new shoes. I asked for a leg length X-ray since I've noticed that

> she seems to be walking with a limp more than before. They also did

> a bone age test.

>

> Here were the results:

>

> In June her leg discrepancy was 2 cm and now the x-ray shows no

> discrepancy. Her bone age in June of last year was showing about 3

> months(she was 7/2mos then) now it says 18 months and she just

> turned 19 months. Should I be happy that everything is evening out

> or should I be concerned that maybe she is advancing too quickly

all

> of a sudden. The nurse practioner at Shriners didn't seem

> concerned , but did say that the way she was walking shows that she

> MAY have a mild case of cerebral palsy. Of course, that is the

> FIRST I've heard of anyone suggesting cerebral palsy so I'm trying

> not to be too worried.

>

> Will someone please tell me that I'm worrying over nothing. And do

> all parents sometimes wonder if their really doesn't have RSS,

> although 3 doctors have confirmed it, but only on from the

> characteristics of it. She is not growth hormone deficient and all

> blood tests came back normal.

>

> Thanks,

> Tammy

> Mommy to 19 months RSS, GERD G-tube and ADHD and

> idiopathic short stature.

---------------------------------

[Guest guest]

<<MAY have a mild case of cerebral palsy. Of course, that is the

FIRST I've heard of anyone suggesting cerebral palsy so I'm trying

not to be too worried.>>

I would try and figure out if that is so as soon as you can. Mild CP is not

that bad, but allot can be done to help her if she does. My cousin's

daughter was just diagnosed with mild CP and she is 13 years old ( yes, I

said years).....There are allot of services available to her even now, but

if it was caught sooner, it would have been better...

R

Mom to:

Jed (1/22/93) Tic disorder, Asthma, Heart Murmur.....

Liam (12/12/00) SGA/RSS, Hypothyroid,Asthma, Epilepsy, Hearing Impaired,

Sensory Issues, Food Allergies, Heart Murmur...

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