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

[Guest guest]

Tammy,

Thank you for the nice comment about Zoe. She is a maniac! (smile). I looked at

's pictures and she is VERY cute! I can't believe how small she was!

You must have been scared. She sure looks great now! I do see the RSS traits in

's baby pictures but is is harder to see them now. It is great that she

is walking well (it looked like she was walking in her 15 month photo). Zoe did

not walk until she was 15 months and couldn't crawl with her head up until she

was probably 20 months. It was during this time that Zoe was learning how to

walk that they found the leg length discrepancy. We took her to a bone doctor

and he put an insert in her shoe. Well, she didn't like that and she kind of

just adapted. Her PT said that if she walked better without the lift to let her

do it - there was only a 2.0 CM difference. Since then it appears that she will

have catch-up growth on her smaller side and then her bigger side will grow and

so on. You can see the difference in one

side on her head but she has so much hair now - all you see is hair .

I can so understand your feelings about seeing Dr. H at the convention. What

day is your appointment? What I can tell you is that you will not regret seeing

her because, although she can be a little harsh sometimes, you will have no

doubt about your child's disgnosis and what to do from there. My husband calls

her the Wizard (as in Wizard of Ozz) because we never felt sure about anything

until we saw Dr. H. The funny thing is that we expected her to pat us on the

back and say how great a job we were doing - and then she got after us (rightly

so) for over feeding Zoe What a shock that was (lol).

Zoe is not tube fed. We were lucky to have her start Periactin at 9 months of

age and this really helped her develop her eating skills. We also had a great

support group through Infant Learning who worked with me to make eating more fun

and less pressure. I remember crying and being so scared at meal times before

that! Have you heard about Periactin? I think it saved my family - honestly.

Meal times were terribly stressful and we were all very tense. My older

daughter, , never got any attention durring meals and my husband didn't

want to even be home to eat. Anyway, now it is more relaxing. We talk about

our different foods and what they do for our bodies. This has helped Zoe a lot

even at 3.5 years She can tell you all about how water is good for your kidneys

and protien is good for blood sugar (makes you feel better) and muscles (so you

can climb better). Zoe is not on Periactin anymore but we keep a can of DuoCal

around to increase calories in her food and milk

if she is having a really bad eating day.

Zoe does not qualify for GHT because she is at about the 5% on the charts. Her

daddy is 6ft 4in and her G-pa's are all over 6 foot as well. So, Zoe is tall by

RSS standards. Once she started getting enough calories at about 11 months she

had a lot of catch-up growth. She was well below the growth chart before then

and she just took off and has been between 5% and 8% since then.

I can't wait to see you at the convention.

Tammy Mayeaux wrote:

,

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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