Advice please.

[sarik]

I've just joined this forum having found the fasd trust, yesterday both of my adopted daughters (8year old twins) were diagnosed with fasd at a genetics appointment. To be honest i don't know how i feel, i was convinced one of them had it but for both of them to get the diagnosis has floored me. I went to the appointment fearing they would say it wasn't fasd because i didn't know what else it could be but also hoping they would tell me i was worrying about nothing (silly i know). So i guess i just want to know what other peoples experiences are and what I can expect. Sorry i know I'm not making much sense just feeling a bit shell shocked.

[chill1004]

Even though it might be a shock to get the diagnosis, with it you will be able to access help more easily. Lots of people have to really fight to get a diagnosis.

[Davel831]

We know exactly how you feel , we have two adopted children and whilst waiting for the genetics testing. We have documented proof of birth mum drinking for one child but not the other. So we are testing complete the both.

We was convinced for one child but we are thinking the other now as well. But you will get help now you have that diagnosed

[beanhead]

Hello

On the day when our 6year old was diagnosed with Fas The Doctor informed us it would be likely that her younger sister would also be diagnosed with Fas afterwards too

Our 5 year old was seen 3 months later and was diagnosed with Partial fas ( which is the same disability but has no physical/facial features)

It seems once an older sibling has been confirmed with Fas the younger sibling/s inevitably are usually too. It is obviously more complicated than that but this was the case with our girls.The youngest child at that time was not showing as many symptoms of FAS but now certainly is (2 years later) Infact our oldest seems to be less affected!

Therefore I am not surprised at all your twins have both been diagnosed and maybe had to be really so.Try not to be disapointed the Geneticist knows what they are doing.

The extra support available etc will be invaluable for your children and importantly for the rest of there lives. If the geneticist has maybe made a mistake then only time will tell ...but better to get the FAS diagnosed now rather than to have to fight for it maybe later.

[jenniw]

I am sorry you have to deal with the news of 2 dx. It is better to find out when they are young, my son is 15 and after 7 years of pleading the Consultant has agreed to do the test. I cannot begin to tell you the damage knowing but not having a firm dx has caused him, I want to tell you but I am close to meltdown right now. At least now you can proceed to secure the support they will need, raising our children can be difficult but very rewarding, in my opinion the biggest battle is won. Best wishes.

[Lilbill]

We always thought our adopted daughter ( now 16) had fasd but she had some genetics testing done and we have been told that she has a 'large deletion in chromosome 4' which they THINK causes learning and behavioural problems . It is a huge relief to actually get a diagnosis for her and to have people believe that she does actually have problems after an eight year struggle with schools and doctors. Hopefully we can now get her college to accept that she really does need extra support as she struggles and is socially quite vulnerable. Good luck with your daughters, at least now you have a diagnosis for them it should open doors for help for them, especially at school. x

[sarik]

Thank you all for your replies, it realky does help knowing other peopkes experiences. We are s couple of days down the line now and it is starting to settle in, i think i was shocked that they were both disgnised because one seemed to be doing so well, i guess in hindsight she is compared to her sister but against other children of the same age not so well. We are waiting for a referal gor cardiac review and to have their kidneys checked and this week is going to be all about working with school, luckily the girls school is amazing and I'm sure they will help us. Once again thank you everyone for replying x

[FamilySupport]

We so feel for you; it can be a shock to have a diagnosis, even if it was strongly suspected. For others it is a relief. However, at least you know you are not alone and there is a large community to support you.

Get yourself a copy of Julia and Dr Mather's book -amazon.co.uk/Foetal-Alcohol...

Find your nearest support group - fasdtrust.co.uk/cp8.php

Give us a call on 01608 811599 and we can discuss any training requirements school now have.

We also have a facebook group which you might want to join - facebook.com/groups/5155166...

And always do post on here - there are lots of very kind, lovely people here who understand and will support you.