reply to Joanne Rose

[Guest guest]

Hi Joanne,

I have a couple of questions.

Which one is your son? on or Christian?

If on is your son, has a geneticist or a pediatric

endocrinologist confirmed he does not have RSS ?

Have you gotten a second opinion ?

Has either benn tested for growth hormone levels?

My son has RSS and everytime I see him around children his own

age I am surprised at how small he really is. Even though I try not

to, I am constantly comparing him to other kids. So I don't think you

have lost it. Or maybe we both have !

Have you or your doctors considered growth hormone therapy?

I ask this because my wife and I were struggling with this very

question until we met with his pediatric endocrinologist last

November. It was a typical visit until the very end when she asked

about growth hormone ? Our response was we were not sure if it was

right or not since he seems to be doing better than the average RSS

child. Then she asked " Do you want to be 18, 5 feet tall, never

had growth hormone treatment and asking Why didn't you try? "

We were stunned by her question because up until this visit she was

decidedly against growth hormone for RSS kids or kids with idiopathic

short stature.

Before we could answer she said it would be better to try because not

all RSS or ISS kids benefit from growth hormone. She also said there

was more evidience that would benefit ( hence the change of

mind).

Anyway, my point is, it might be best to discuss it with your son's

doctor and maybe consider a trial period. It may not work but there

seems to be only one way to find out.

Right now my son seems to be having growth spurt but when this appears

to end is when we will probably start him on growth hormone for a

trial period.

I hope this helps.

Ken M

> Jodi

> Today I e-mailed magic about my youngest son who seems to be only

just managing to stay on the 2%centile for his height.I wanted some

advice on whether I ws doing the right thing just accepting that he is

short because of my husband only being 5'4 " but I think that

mentioning Christians RSS has confused them because they have passed

my e-mail to you.on definatly does not have RSS but I don't no

if i'm just being obcessive[do you unconciously measure every child

you see or have I reallylost it]or is there something I've missed

ie/ghd or constitutional growth disorder.Anyway sorry for the

confusion,I just thought I would explain myself.

> Joanne

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