hazeyboy has a diagnosis!

[hazeyjane]

After 7 and a half years ds has a diagnosis of a rare genetic condition. Nothing has changed....but it feels as though someone switched the light on!
Just wanted any geese flying by to know!

(using old name as sometimes I want to be me!)

Yay! So pleased, I guess that means you can find others too which would probably be really helpful.

Yay!!!!
I'm so pleased for you, congratulations!

So glad you have finally been given a diagnosis! I do think it’s psychologically helpful when we’re given a definitive reason for why our DC are the way they are.

Having an answer is just a huge relief ime.

hazey so pleased to hear you have an answer at last.

How is he and doing (and the rest of you)?

honk honk, well done you. that is a long time.

Fantastic news

Honk honk

Thankyou!

I have joined a group on FB for the syndrome, but there are only 50 worldwide and 10 in the UK!

I think it is going to help with school, who have been less than helpful with behavioural stuff (all the parents fault don't you know!), as it transpires characteristics of the syndrome include 'ADHD, autistic tendencies, anxiety aggression and rigid behaviour'.

Just back from an afternoon at the hospital where ds has been referred for a barium swallow test, transit marker test, ph study and endoscopy, so not looking forward to those.

Good luck with the hospital stuff, and really hope it helps with school, a probable genetic Syndrome is hard to argue against, so fingers crossed it will stop school being arses.

Brilliant Hazey, the name makes all the difference for getting ignorant people to provide the help they should but they won't recognise the need when there's no dx..

Woohoo! That's great to actually get a diagnosis and know that you are not alone. I know it doesn't practically change anything but when we met another family that had a child with the same ultra rare diagnosis as ours, the connection we felt was amazing! Hurrah for Facebook, it has its good points.

We got a rare genetic suspected diagnosis back in November and tests came back positive a few weeks. It's a strange feeling I think. Glad you finally have some answers xx

My lo has a rare genetic disorder too

Only 300 or so worldwide which is bonkers

I’d be lost without the fb support group for hers

Brilliant Hazey, the name makes all the difference for getting ignorant people to provide the help they should but they won't recognise the need when there's no dx.

even when the diagnosis is likely to be common or garden autism, without a diagnosis, nope all in the parents head. and can not possible see the relevant people in school.

Fantastic!!

Ds is rare too.... 145 in the world !!!!