Re: Re: Our First Dr. H Visit

[Guest guest]

Hi ,

She really didn't say what is causing the growth

failure. She did note that according to 's

growth chart between 4 months and 6 months is when she

started to slide down the chart. It was during that

period when she started baby cereal. Dr. H's thought

on that is that part of it could be nutrition. She

then noted that did a little more of a growth

spurt after her open heart surgery than prior to it.

So she feels that the hole in her heart may be a

contributing factor, however, currently is

-2.37 Standards for height and -2.37 standards for her

weight.

As far as her diagnosis well I feel that she's the

expert right? But now I feel lost. She has a growth

failure but why. At least when the geneticist and

endo said RSS I knew why and understood what it was.

With this I feel like I don't know anything. Before

we had even seen the geneticist I just thought and was

told by the ped that we have a small child. Now I

feel like I'm back to that but uncertain as to why.

She did say has some of the characteristics

such as a cafe au lait spot, a broaden forehead which

is slightly larger on one side than the other,

slightly curved 5th finger (but she said 5% of the

population has that) and the webbed toes (which she

said about 8% of the population has that). She also

said that she has the high arch in her mouth. I guess

I should have asked her then what is it that makes

that she is not RSS.

We go back May 9 to track how she grew in that time.

If she did grow some we will continue to monitor her.

If she did not grow than she will do " formal GH

testing. " So I guess at this point we are a wait and

see how she does. She thinks she may have a chance to

catch up. If not she said she would qualify for

growth hormone.

Her actual comment to me was if she were walking down

the street and saw she would not think she was

a RSS child but would not think she was her age

either. It's funny because in the past year I noticed

from past pictures that some of 's features are

a little different. But past pictures I always used

to say that her hair line was far back.

Tell me again where do you live?

B

--- anderkat3 wrote:

>

> Hi ,

>

> Did she say what could be causing the growth failure

> (if not SGA or

> RSS)and what to do about it? Are you satisfied with

> her diagnosis

> and do you feel hers is 'correct' over the other

> docs? (I know she's

> the expert, but I'm just curious) I'm interested

> because I do wonder

> about Autumn and what would be said about her

> regardless of what the

> docs here think. She has some characteristics, but

> not others,

> although I know it varies.

>

> ,

> mom to Autumn 1yr

>

>

>

>

>

>

> >

> > Well, we had a first Dr. H visit. We got into the

> city fine. We

> > had a 9:30 a.m. appointment and was seen at 10:00

> and spent until

> > 1:30 with Dr. H and her assistant. Sorry for

> whoever was behind

> > us. She did a very thorough examine. She said

> that she does not

> > consider is RSS or SGA. She said her

> diagnosis is growth

> > failure. She said that she has some

> characteristics of RSS such

> has

> > the broaden forehead, high palate, the finger

> curve (she said

> > slight) and the webbed toes. However, she said

> that 5% of the

> > popoluation has the curved finger and about 8%

> have the webbed

> toes.

> > She didn't think had a small chin.

> >

> > When I heard her say early on in the appointment

> " Who thinks this

> > child is RSS? " at that point I figured what that

> diagnosis would

> be

> > and we told her the geneticist and local endo.

> >

> > She was not happy at all over the fact that we

> used an estrogen

> > cream on (twice) because her concern was it

> could advance

> her

> > bone age.

> >

> > So from here we will be going back to see Dr. H in

> 3 months to

> check

> > her growth and take it from there. It was nice to

> know what she

> was

> > putting in her report since she types her notes

> into the computer

> > right into her report and she gave us a copy as we

> left.

> >

> > B

>

>

>

>

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