Testing for genetic abnormalities - am new and need support

[glimmer]

DD (15m) is currently tested for genetic abnormalites. She does not meet the criteria for a known syndrome, but has subtle dysmorphic features and slow weight gain
(okay, "failure to thrive"), but is happy and not developmentally delayed. I am looking for support and advice during these months of initial testing and uncertainty. I am not sure what the right forum would be. Does anybody have an idea where
I could get peer support? Thanks!

I can't help but surely someone here can offer knowledgeable support? Wishing you and your DD well Glimmer.

We've been going through this with DS(6) for a while. It can be a long process andd you really do need patience - we've still not got any answers after a couple of years seeing the geneticist (sp). So do be prepared for that. Have you looked at unique? Its a support group for rare gentic disorders and i found them quite helpful when we first started.

Thanks for your replies and the link. AaCLooms - how have you been copying? I am not sure I even want to know except if it is something that can be treated. One of the foremost problems I have right now, is whom to tell and whom not. I am normally in favor of openess, but am afraid people (nursery) might treat her differently if they know. Obviously this is fine, if she had SN, but I don't want her to not develop to her full potential, because people have certain expectations IYKWIM.

Hi - I posted a reply to you on the genetic testing post you had posted on! I found unique very helpful too and the contact a family charity as well.

Yes, Contact a family are good

I'd agree with Afternoons, it can be a very long process - it took 18 months with us for an initial diagnosis and I'm amazed they got that, her condition is so rare, and many years on to find out a fuller picture.

Its frustrating, but I found, generally, openness helps me.

Thanks for your reassurance 1980 and Melted!
Thanks also for letting me know about Contact a family. I am so glad I found this forum, although I am sorry that we have to be here...
I have good days and bad days (and lots of dreams...). I think it will get a bit better before a lot worse. 1980 let me know how will get along. We don't have a suggested condition. There are several markers, but nothing fits. But - we are at the very beginning of things...

My DS2 was failure to thrive for the first 18 months or so (he's 2y 8m now) although he has development delays as well. Good luck with the genetics tests.

elliejjtiny - do you have a diagnosis or did it "resolve" itself? But then you say your DS2 had some development delays... Here, everybody is waiting for other delays and I hate this attutide, because I am worried it can create realities in case there is nothing...