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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Toddler has just got DNA array results back

22 replies

2boysnamedR · 12/05/2014 19:56

And there's a duplication. We didn't have any genetic counciling and I was just told over the phone. I don't know how to feel. On one hand it was always likelysomething would be amiss but now there is I don't know how to feel. My middle son has the dyspraxia diagnosis so if me or dh are carriers then ds gets tested.

I'm 26 weeks pg. I don't know what to think. Four kids and three with specail needs. Someone hates me :0(

OP posts:

lougle · 12/05/2014 20:02

Oh I'm sorry nobody hates you. Babies are complicated things and sometimes there's just a misprint in the code.

StarlightMcKenzie · 12/05/2014 20:06

Oh my, how difficult things must be. No-one hates you. Remember too that a diagnosis isn't the same thing as a prognosis

Original poster

2boysnamedR · 12/05/2014 20:11

I can't talk to anyone. You know what it's like. No one gets it. Not even my family. So if its hereditary I guess the info get passed down but out or back up. My mum keeps asking if he's better yet, mil refuses to accept it and fil is a emotional frigid dick who wouldn't blink it was cancer. I feel so alone

OP posts:

lougle · 12/05/2014 20:15

You might find the Unique website helpful.

Skimmingstones · 12/05/2014 20:21

I'm so sorry you're going through this and feel so alone. I wish I had something useful to say

Original poster

2boysnamedR · 12/05/2014 20:23

Thanks, the doctor told me to look on there. There's a leaflet about his gene duplication. Not sure i can face it right now. She said only four people are known to have this duplication. I guess maybe that's a good thing as its not enough people for any answers. What I dread is both boys have it then there goes the hope of growing out it, not that was ever any hope of that. It's like repeatedly dieing inside, I should be over feeling like this by now. Guess its never going to get any easier to accept. If I could take this away for them by getting run over right now I would

OP posts:

StarlightMcKenzie · 12/05/2014 20:25

Ah yes, 'Here's some potentially devastating news, take this leaflet, look at this website, consider yourself discharged!'

StarlightMcKenzie · 12/05/2014 20:29

2boys None of us here are silly enough to play down your concerns, but time is something you need to give this. Time and when you are ready, research.

If there is little known about the condition, then you have every reason to be hopeful. Assumptions are all that can really be made and they aren't individualised.

stillstandingatthebusstop · 12/05/2014 20:37

Oh no 2boysnamedR that's an incredibly tough situation to be in. Poor you. I think the sentence someone else posted that diagnosis isn't the same as prognosis is something to hold on to. Sometimes things can look really bleak but still be ok in the end - in my experience. You don't have to deal with this all now tonight. Is there someway you can give yourself a break? Have you got someone to lean on?

Original poster

2boysnamedR · 12/05/2014 20:44

Nope no one to lean on. Just me and dh. I think your right its best not read anything tonight. I was looking forward to filling up my second dla form this month and finding a ed pyhc for ds statement appeal.

I just you never really know. Ds has been saying Lamborghini and Statue of Liberty in the last two weeks. Not bad for someone who doesn't what what tomorrow means

OP posts:

beautifulgirls · 12/05/2014 20:51

DD has a deletion and we were given very little info. They arranged a genetics appointment for us some months later but by that time I had read up about it all online and probably knew more about it than the doctor who saw us. They basically told us very little and could give us no real support. What I have found the most helpful though is facebook - for our particular issue (16p11.2) there are a couple of groups on facebook and many parents to chat to and share information with. I have found that by far the best source of information so far. We are now three years on since learning about her issues and it doesn't feel half as scarey as it did when the news was new. We are still very much unknown about some things for the future but we just deal with the here and now and do our best to prepare for the longer term. Inbox me if you would like.

Original poster

2boysnamedR · 12/05/2014 21:01

It's so many questions now. Will my nt son be a carrier? Will any grand kids have this? Am I dyspraxic? Should I not had more kids? How will I tell people if I need too?

OP posts:

PolterGoose · 12/05/2014 21:06

This reply has been deleted

Message withdrawn at poster's request.

ouryve · 12/05/2014 21:30

((2boys))

I think the delivery of the information sucks as much as the results. Even if it was to admit that no one has a flipping cue what this duplication represents or the effect that it has, that would be better face to face than over the phone.

Original poster

2boysnamedR · 12/05/2014 21:47

I think from what I have heard I should have had counciling before he had the tests. It was never offered. I have a biology degree so at least there is a good level of understanding what this means, as much as I can. No one knows so then your left wondering if its worth knowing. But knowledge is power, if only for when the kids have kids and see quirky ways at 18 months. I honestly didn't I would react so badly

OP posts:

chocgalore · 12/05/2014 21:48

sorry, 2boys. I have been there as well, its crap.

will you see the geneticist? at least we had a proper appointment for the micro array results... but a phone call only is appaling.

I suppose they will want to test you abd DH as well. If you happen to be a carrier then they might offee testing to your NT child once he is 18 (at least that is the info we got).

I second joining Unique.

Ineedmorepatience · 12/05/2014 21:57

Have no advice for you sorry 2boys but am honking for you

Original poster

2boysnamedR · 12/05/2014 22:02

Yes me and DH are getting tested and seeing the genetist for our results. God I hope we can have the kids tested now, not 18. I wouldn't tell him now if he's a carrier but I can't wonder for the next eight years what this means for him like the rest of our kids.

OP posts:

chocgalore · 12/05/2014 22:14

Just try to take it step by step (I know easier said than done). first see if you are a carrier. it might turn out to be a de-novo mutation after all.

Goneroundthetwist · 13/05/2014 11:05

Probably got here to late but Unique is excellent, they have chromosome disorder guides and they were really helpful on the phone. The also have secret Facebook areas where you can chat with other parents.

Aftercare post being told on the phone sucks.....

bluebirdonmyshoulder · 13/05/2014 12:42

So sorry, sending you hugs and honks. What happens now? Have they told you it's likely to be from one of you?

I think you're well within your rights to demand more information and counselling re finding out more.

me55monster · 13/05/2014 13:12

Hi 2boys I'm so sorry that you've had this news and feel for you about the way the news was delivered without the benefit of any counselling or support. My own experience was very similar

Just wanted to say that my DD has a very rare duplication so if you ever want to PM me to discuss things with someone who knows, please feel free {hugs}

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