Addenbrook or Gosh for gentics

[roundthebend4]

ok we been offer4ed appointment for both to see genetic team .And wonder if anyone has experiance of either

Our testing was done at Addenbrooks, although all via local hospital and consultant, lots of corrspondanc and q's from them was all very quick and efficient, offered us a follow up at the hospital when initial screening & then 2nd round of bloods came back clear. We refused as I don't think there is anything genetic to find, but I was impressed with their service & support.

Ty think there trying see if ds has a collection of differnt issues and just been unlucky or if there all linked somehow

Do know he has cp ,verbal dyspraxia oral dyspraxia but thetly reckon it's more to do with nerves muscles in face not working plus he has so
e skeleton issues going on

we had basic blood tests fragile x etc ,can I ask if they was looking for anything specfic ,

I used to work at GOSH (many moons ago) researching genetic conditions and I would think that they would be better at picking up the more obscure genetic disorders simply because they get sent the more difficult cases. If had the choice of a local hospital or GOSH, I would go to GOSH. (We've been referred to local genetics centre in NW London so am slightly that you have a choice)

The gosh one will be when they do outreach one locally other is addenbrooks so not local but not to far either.

Think referal come from 2 differnt deparments neuro done one who we see at addenbrooks then know ortopaedics refered to gosh as ds seems to have some odd skeleton structual stuff going on

but argh choices am leaning towards gosh as thinking the skeleton stuff is unusral poor ds been poked prided by every man and his army locally

I'm in east herts so kinda in middle of them both

He has CP & ASD, was prem so we assumed all his probs were down to prematurity BUT he also has lots of birth marks, was very hairy, very mixed muscle tone so not completely typical CP also this was around the same time as his ASD dx so they were still working on it being gdd and a mix of other stuff. He also has additional bones in his ankles so sightly odd skeletal stuff too.

Although we ahve a cause (his prematurity) I think his paed just wanted to eb sure we weren't missing something.