I wish I'd written this letter ages ago!

[fanjoforthemammaries7850]

Have been in the dark for ages about what is going on with DD's DX.

Was scared to contact the neurologist about her nursery assessment as I thought they would say they now were going to diagnose ASD...silly to be scared of a word but I just sort of liked not knowing. (I don't dispute she has a lot of traits though).

Anyway I wrote a pretty stern letter asking for an update and since then have received an appointment at a neuro unit in Glasgow which has a team of neurologists, we have a genetics appointment and the consultant neurologist just called me to set up another appointment with her and her colleague to review DD again.

Wish I had stopped being an ostrich sooner!

She also said they were still in the dark, which surprised me, I thought after seeing DD at nursery they would surely diagnose ASD.

Yay for me

(sorry to boast)

Good for you Fanjo. I know what you mean about not knowing/wanting to know. Ds had ados test last week and has lots of AS traits so was expecting dx - didn't get one. Having to now chase up for sensory assessment and don't know when/if we'll get dx. It's a pain having to chase all these professionals all the time - think they hope that parents will give up and not keep bothering them!

Yes, I'm sure if she is diagnosed with something it won't be "better" than ASD IYKWIM, but hoping they get it right and take their time.

it just seems like a mixture of CP and ASD and being NT, so no wonder they are confused.

Well done.

I know exactly where you're coming from re being an ostrich; for any number of reasons it's difficult to know when to 'push'or how much. Though it is amazing just how quickly you get a response when you do tackle professionals.

Yes, I also have to say the Professor in question is an extremely nice and kind woman too, I ended up feeling apologetic that I had written a somewhat stern letter.

Well done you

thanks. There isn't really a better dx. At the moment I think we get all the support we would get anyway. The only benefit a dx would bring would be if it's something treatable,which is possible.

Well done you.

I know exactly about the when and how much do you push bit... It's a bloody hard call.

At least with some type of dx you will have dome type of starting point to work from.. That is always a good thing. :)

< offers a slice of cake for being a brave mum >

thanks!