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Advice please

(26 Posts)
MrsDeVere Sun 09-Jun-13 17:59:19

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TeenAndTween Sun 09-Jun-13 21:20:55

OK, I don't know you background, but you are the reason I'm here. when i first stumbled on Mumsnet the gymbalow saga was just getting going. smile (that was you wasn't it?)

I am guessing they might know there is something amiss with your DS but not that interested?
In which case, you really have nothing more to tell them until you have some actual facts? Maybe??

I don't know really, but saw no one had responded.

MrsDeVere Sun 09-Jun-13 21:29:44

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Lilka Sun 09-Jun-13 21:33:31

I guess I would wait until I had more definite information or preferably an actual diagnosis before telling anyone

And I think I would tell family - although of course I don't know what your family are like - just so whatever happens later, you can say you never his any important health information from them. Maybe (probably) they will forget you told them and not bother to follow up,but you never know, sometime in the future a doctor may mention genetic disorders to them and they may remember what you told them?

Can you get away with one quick phone call to them? And then disengage again?

MrsDeVere Sun 09-Jun-13 22:14:18

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Italiangreyhound Sun 09-Jun-13 23:31:52

MrsDeVere, so sorry to hear about this medical situation.

Tell them, (IMHO).

You and DH/DH on his own write out something that says it all in the exact way you want to say it then send it or email it or DH read it down the phone to each one you need to. Then relax.

Who knows if they will use this info or not, but maybe one day it will be useful and although there are family problems (I don't know what they all are) there will be other children born to the family and maybe someone somewhere will use the information for good. That is why I would say to send it in written form if the family members can read English (not making any judgments on people's ability but I know lots of people struggle with reading in my own family).

A while ago I spotted something I was not sure about and wondered about telling NSPCC (Totally different situation but I think you know where I am going with it), I umed and ared and felt crap. I made a phone call to NSPCC. They put my fears to rest. All done. RELIEF.

I just think for your own peace of mind and for that one family member who might use the info for good, it is worth it. If you don't want to give away your address or number to distant relatives etc you can always just send the letter with no return address on it or make calls from a pay phone (if you can find one).

All the best.

Meita Wed 19-Jun-13 17:02:58

Stumbled upon this rather late, but just wanted to say - there is a right of not knowing. Some people would rather not know if they had a genetic disposition for something. But if they do want to know, you can't really withhold it.

Have you been in touch with them since posting this? What did you do?

If you haven't yet, you could maybe start by phrasing it as a 'there seems to be a genetic issue - it might affect you and your children as well - do you want to know more about it?' sort of thing.

Devora Wed 19-Jun-13 22:52:13

Hi MrsDV, don't know how I missed this before. Yes, I think you should tell them. I understand why you don't want to engage in a long round of phone calls with some of them, though. Would it work, do you think, to write them all a letter setting out the facts that are available, and inviting them to ring you if they want to discuss? Then hopefully you will be spared some shock reactions.

Your poor lovely DS. I hope this will help get him and you some useful information and hopefully resources.

FamiliesShareGerms Thu 20-Jun-13 06:07:26

I missed this one too - but Devora has beaten me to it to post what I was going to say...

Have you decided what you are going to do yet?

MrsDeVere Thu 20-Jun-13 07:52:00

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Kewcumber Thu 20-Jun-13 12:20:20

Sympathy here but no practical advice. Sorry!

MrsDeVere Thu 20-Jun-13 13:09:11

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Lilka Thu 20-Jun-13 13:31:02

Like Kew, I have sympathy but no helpful advice. I would lean towards disclosure with your DH doing it, and not getting too involved. Best of luck to you

MrsDeVere Thu 20-Jun-13 15:04:42

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Devora Thu 20-Jun-13 20:37:11

It's a whole new level of continued involvement and complication, isn't it? I do understand why you have been ambivalent.

MrsDeVere Thu 20-Jun-13 20:47:47

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Maryz Sat 22-Jun-13 14:07:22

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MrsDeVere Sat 22-Jun-13 14:14:33

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Maryz Sat 22-Jun-13 14:22:03

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MrsDeVere Sat 22-Jun-13 14:34:55

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MrsDeVere Fri 28-Jun-13 18:23:31

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Devora Fri 28-Jun-13 21:52:14

What happened, Mrs?

MrsDeVere Sat 29-Jun-13 12:28:15

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Devora Sat 29-Jun-13 18:30:21

I get it.

I would be fuming.

Although we had a lovely social worker, the entire experience of adopting has left me sensitised to being patronised and bossed about by social workers - a feeling like, "YOU ARE NOT THE BOSS OF ME ANYMORE".

And really, in a situation like this, you say you can't blame them for not understanding the nuances but in that case what are they for? They're SUPPOSED to be able to quickly grasp complex information and its implications for real lives.

So sorry they were no help. What are you going to do now?

MrsDeVere Sat 29-Jun-13 18:40:54

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