neurologist

[jbadgirl]

have an appointment to see him on monday, hope he can shed some light on ds?

keep you posted x

Jbadgirl, I can't remember his actual age. How are you feeling? Terrible I expect

Toby is now 7 months but 6 corrected. and yes i do feel terrible x i hope he will catch up eventually

Did they give you any idea of what happens next? Any contacts for support groups? Put you on any waiting lists? I'm sorry, I don't know much about CP but presumably they haven't just told you this and left you to get on with it?

jbadgirl, how old is your ds? FWIW I had a 'sort of' diagnosis of CP off our geneticist but we are waiting to see the neurologist. Even though it is what i have always thought (although she is very complex and is nearly 6) it was still a shock

they do 'just tell you' davros, i dont even think they think about how you might feel, from my last previous six years in this game

jbadgirl - sorry to hear your news You know where we are if you need to sound off, or want some support. I think there are a number of mums on here who have children with CP.

Thanks for all your posts x they have kind of left us to get on with it but we do attend theraplay every week which they said will be the most useful thing for him at the moment. they will do another mri scan in the future but there isnt much point at the moment.

jdbadgirl, sorry to hear this. We are all here for you. Whereabouts in the country are you? Like Davros says, are there any specific support groups?

Jbadgirl Sorry that you are feeling terrible. It must be a shock even when you are sort of expecting it. Hope his play therapy goes well.

Merlot, my ds has an autism dx but I wonder if he actually has a differnet syndrome. He has some birth defects and has some markers for syndromes. We had a basic chromosome sweep and everyhting came back ok. We turned down MRI because we didn't want ds to have GA.
Many syndromes seem to have autistic features. My sons best friend seems autistic but has DiGeorge syndrome.

We live down south in west sussex, and i am still looking for any support groups but theraplay is a great one too.

How far are you from Brighton?

jbadgirl, I too am in West Suseex and I have a 4 yr old with CP . Pleeeesee CAT me if you want,do you go to Worthing Hospital at all?

I live in bognor regis!! so not too far from brighton. we go to chichester hospital not worthing x

am in Steyning, so not too far away at all. Was ds prem?

Yes ds was 4 weeks prem, they induced me cos he stopped growing at around 28 weeks.