Please or to access all these features

SN children

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

Finally - results of Rett syndrome test

12 replies

Caroline5 · 05/08/2004 17:01

I rang the geneticist again yesterday and he did ring back today. The result of dd2's Rett syndrome test arrived yesterday (how convenient after 9 months delay!) and it is negative - a big relief after such a long wait.

It doesn't seem likely that we'll get a diagnosis now as this was the last idea on the list, but I'm not too bothered. At least nobody has any expectations of what dd can or can't achieve. She is doing quite well at the mo - commando crawling about a foot towards interesting objects and dragging herself towards me to give me a hug!

OP posts:
mummytosteven · 05/08/2004 17:05

Glad you finally got the result, and it was negative. Such a shame you had to wait so long for them to put your mind at rest

best of luck to you and your DD

Hulababy · 05/08/2004 17:05

Glad to hear you got the result you wanted there

BlossomHill · 05/08/2004 17:17

Caroline5 - What a relief. You must feel as if you have had a huge weight lifted off of your shoulders!
Very happy for you and your family!

Piffleoffagus · 05/08/2004 17:35

it is always good to know one way or the other.
Congrats, although not having a dx can make life a little limbo ish for a while, never knowing what to expect etc.
I too have a commando crawler, but after 11 mths of it she has finally started to do some 4 point crawling! Very funny to watch, it looks...
well a bit odd!

coppertop · 05/08/2004 17:51

So glad the waiting is finally over for you and your little commando crawler.

Fio2 · 05/08/2004 17:55

SmileSmileSmileSmile i have come out of hiding to say woohooooo i am so pleased for you carolineSmile I have e-mailed you, fi you want to chatGrin

Janh · 05/08/2004 18:37

Oh, Caroline, I love the last bit of your message!

I'm sorry you still don't have a definite diagnosis but glad it's not Rett's. Hope she continues to do well.

Caroline5 · 05/08/2004 21:42

Thanks for all the lovely messages - we were in really good moods this evening, dd1 and I started doing spontaneous (and ridiculous!) dancing to music on the radio - dd2 looked very bemused!

OP posts:
Jimjams · 05/08/2004 21:45

What a relief- although a dx can be helpful I would imagine Rett's is one its good not to have.

heartinthecountry · 08/08/2004 21:14

Great that you finally have a result Caroline5. Sorry not to hve posted before. Been away.

misdee · 08/08/2004 21:20

Glad its not retts. my friends dd has retts and its heartbreaking to see her

RettEducation14 · 31/05/2014 19:42

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

New posts on this thread. Refresh page