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New to this..

(3 Posts)
Notmydolly Sun 21-Aug-16 08:12:56

I have D's nearly 4. We had a few tests this week at Guy's in London where it was confirmed he has a genetic condition but we are not sure which one. He needs more tests..

I've told a few friends but now stopped as I'm going to scream at the next person who says how sorry they are for us, or how you can hardly tell to look at him and he's such a happy chap!!!!

When explaining to people what do you say is wrong....I don't want to say he's I'll as he's not in that sense. But he is different so I never know what the right term is??

dimples76 Tue 06-Sep-16 21:48:55

What was it that lead to the testing? Could you just say (to those who you want to share with) due to his xxx they are carrying out further tests.

Or you could say he has additional/special needs if that's relevant.

I have found that most people (outside my close family) are not that interested to be honest and I have stopped trying to explain things! The most obvious thing about my son is that he is tiny. If anyone comments on it I just say yes he is - in the past I would go off into a long explanation of genetic testing and endocrinology consulations

MommaGee Sun 09-Oct-16 01:45:28

I tend to stick to the basics - what is physically wrong at the time (CDH or intestines or heart). Waiting to see if there's any learning delay as he's only 16 months but will probably give a general "X has these issues" then if pushed "be a use of his wonky chromosomes" and if pushed they deserve the full waffle about what his exact diagnosis is. Most people are happy with vague - oh yes, he is behind with that, we're having tests done atm to find out if there's a specific cause

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