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SN children

Here are some suggested organisations that offer expert advice on special needs.

We're going to see another geneticist tomorrow

5 replies

emkana · 29/11/2007 22:41

Somebody who specializes in dwarfism.

I'm not expecting a diagnosis in the near future though, I have learnt that I have to be patient.

In a way it doesn't matter so much anymore.

OP posts:
deepbreath · 29/11/2007 23:47

I hope that this new geneticist can shed some light on things for you.

Do you know of any online forums about dwarfism that might be able to support you through this, or maybe give you a few pointers?

My dh and dd have a genetic growth condition too, but we were lucky enough to get a diagnosis early on. Having a name for what's wrong can help at times. On the other hand, knowing what it's called won't change the way things are.

Take care

yurt1 · 30/11/2007 08:46

Hope it goes well emkana.

Bumblelion · 30/11/2007 11:39

I hope it goes well for you Emkana.

My DD also have a genetic growth disorder (but overgrowth) and we only received the diagnosis because we actually managed to see a specialist who knew all about her condition.

I think if you see a 'specialist' geneticist it can make the difference between getting a firm diagnosis or not.

If we had seen another geneticist on the day, we probably would still not have a 'name' for my DD's condition.

Saying that, like deepbreath says, it doesn't change things but I have found it helps to have a firm diagnosis.

emkana · 30/11/2007 17:12

Just like I had expected it turned out to be a 5 minute consultation after a two hour wait...

and no result as yet. I'm slightly because they put one condition back in the picture which I thought had been ruled out, and which is a bit scary. Hope they're wrong with that.

They will take x-rays in six months time and then take it from there.

So I need a bit more patience... (sung in manner of Take That)

OP posts:
yurt1 · 30/11/2007 23:37

6 months.... sympathies, waiting is never easy.

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