Re: Totally confused on bone age test and leg x-ray

[Guest guest]

Hey Tammy,

My g-son, was first diagnosed by a geneticist here in Cleveland at 3

months of age, and then that diagnosis was confirmed by Dr H (proclaimed by

many as the #1 RSS specialist in the US!!) when he was 8.5 months of age.

When we attended our first convention, was about 1.5 yrs old. He'd

done SO well on Dr H's protocols, with his caloric catch-up, etc... that

numerous people came up to me and asked if we were " sure " that was

RSS. It happened SO frequently that I began to wonder if maybe Dr H was

wrong!! She later assured me that SHE was SURE that Bran was RSS! LOL

Doubt can creep in on ALL of us! LOL

Pat (g-ma to , RSS, 3 yrs 5 months old, 23#, 33 " , G-tube, GHT)

[Guest guest]

,

I'm actually on the list to see Dr. H at the convention and am very nervous as

to what she will say too. She's been diagnosed by 4 other doctors and I still

have my doubts, maybe it's denial. I hope Dr. H will put my mind at ease and let

me know if she has been diagnosed properly. Have you heard of the leg

descrepancy coming and going as they grow?

I looked at Zoe's picture and she is so pretty. I'm glad she is doing well. Does

she have a g-tube and is she on GHT? I will probably get 's posted

tonight.

I hope to meet you at the convention. Keep in touch.

Tammy

Nelles wrote:

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.

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