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Genetic Testing Question

(4 Posts)
EmmaRoid Thu 06-Apr-17 12:53:23

Not sure if this is the right place - but here goes...

My ds has a couple of issues, and today instead of being discharged (which I expected) from the peadiatrician, they referred him for genetic testing.

I dont understand why, and what this will achieve - but want what is best for him, so understanding and "knowing" could help.

I am not sure about it. My thoughts so far are:

What good can it bring? There is no "cure" for what he has been diagnosed with, so if there is a chromosome reason, what good will this do, as the reason "why" is still going to be there. (I do not mean this offensively - in case it comes across wrong).

He is wonderful - challenging, but still wonderful - this will not change that.

Would it hold him back in the future? (if there is anything that comes up)

Does anyone have any experience, or websites they used to help make a decision - or if you can share your thoughts if you did/didn't go for testing, I would be grateful.

I was not expecting this so feeling shell shocked, so cannot order my thoughts.
I popped this in mental health as some of his issues are behavioural and he has been referred to Cahms - so figured it was the place to start? Feel free to redirect me if I have got this wrong

Thank you in advance

KingIrving Fri 07-Apr-17 09:14:00

Yes, there are many issues that could affect his future life. I have a genetic condition which is passed 50:50 to children and my geneticist strongly advised me NOT to have them tested yet as a confirmed diagnosis is legally binding you to disclose it. This means it will affect jobs, mortgage, insurance (including travel insurance), even immigration to certain countries, uni .... so many things. .

So, if I were you, I would wait. Have the doctors tell you what they want to test him for. Is a diagnosis necessary for treatment or management.

Take the time to think about it. Unless of course, knowing which mutation would determine a specific medical approach.

Blossom789 Mon 17-Apr-17 15:29:53

Some genetic conditions have knock on impact on behaviour. It may be useful to know the context or you may be in a cycle of continued assessments as your son gets older.

WaxingGibbous Mon 17-Apr-17 15:46:20

Dc had genetic testing done at 3yo to cancel out certain things more than anything as we knew something wasn't 'quite right'. Without giving too much away it can have an effect on behaviour, processing, motor skills etc. I suppose I've found it good for us in that we have all the information there and it has made it easier to access further support.

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