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Here are some suggested organisations that offer expert advice on SN.

Saw consultant this week and I'm just so fed up again really

(10 Posts)
emkana Sun 24-Jun-07 08:20:20

Nothing new as usual. The genetic test that they did in DECEMBER - no result yet. No new appointment with geneticist. No nothing.

Still haven't had any further news from tests done by lung specialist either.

Grrr at the lot of them.

mymatemax Sun 24-Jun-07 08:45:43

oh emkana, its so frustrating waiting for appnts & results. Is anyone able to chase these for you, the paed maybe?
We have a family co-ordinator at the CDC who chases reports etc for us, is there anything similar in your area?
How did it go otherwise, was the consultant happy?
Gorgeous photo on your profile!

geekgirl Sun 24-Jun-07 08:47:27

what a pain - and that they don't have a result for the December test yet

did you ever send those x-rays off to the JS people in the states?

emkana Sun 24-Jun-07 08:52:44

mymatemax - Thanks. This was the paed we saw on Friday. What does CDC stand for?

geekgirl - when I asked about the Dec test the paed just said "Oh yeah it can take a long time." In Germany it takes two weeks...
We did send the x-rays, and luckily Jeune Syndrome was ruled out by the Americans. We sent the x-rays to the German specialist for skeletal dysplasias as well, but he said he wasn't sure either and more x-rays would be needed, to see how the bones have grown. But when those will be taken, who knows...

geekgirl Sun 24-Jun-07 08:56:57

well, that must have been a relief at least

outrageous about the tests - maybe they lost them?

emkana Sun 24-Jun-07 08:59:29

it was a great relief.

Yes, maybe they did lose them. They are just really not that interested in getting a diagnosis...

mymatemax Sun 24-Jun-07 09:02:26

CDC = Child development centre, we don't actually use the cdc as his paed isn't based there but we still use the co-ordinator we were told about her at a review as there were lots of different professionals involved.
She is very good, knows her way around the hospital & system

dinosaur Sun 24-Jun-07 12:05:19

How very frustrating...

FioFio Sun 24-Jun-07 12:08:13

Message withdrawn

emkana Sun 24-Jun-07 13:22:28

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