We got a diagnosis

[roundthebend4]

After yestersdays good news , we had neuro today and got unexpected dx of Cp involving all 4 limbs and his core muscles to because of the low tone really suprised me though reflxes very strong and starting to see his feet pulling to one side yet thanks to the hypermoblity can still twist his feet around as twists from the knees

Though the vernal/oral dyspraxia still stand as does the hypermoblity and the epilepsy cant be bloody content with just the one can he

What a rollercoaster for you, roundthebend4. I am relieved that you are getting answers, but sorry that you have another dx. Will this change things in terms of the help DS gets?

gosh that must be such a shocker, noone has ever suggested that before have they? are you OK?

no clue even missed the type of cp other than affects all limbs and his trunk as was juggling ds and his bumped head going to phone neuro tomorrow and ask to go through with me again cant leave till his next appointment

Will mean the GDD tag goes which everyone felt was incorrect and should not affect his unit place as his primary need is still speech and unit was not worried about his pd

no not really though wondred why he kept going on last time about ds reflexes being fast and did mention is seen in cp but thought the low tone etc ruled cp out so did not pay much attention looks like i have a lot to learn

Did MRI show basal ganglia injury roundthebend4? This usually affects trunk muscles (low) and all 4 limbs (fluctuating tone).

i wonder if it could be Dystonic cp which could also explain the speech issues?
Ds has very low tone in his trunk, ridiculously strong limbs at times, once booted me over the other side of the room when his leg shot out and his tone increases when he tries to do something.

ds knows lots of words and can sometimes say them but other times its just sounds that come out or he quite clearly mouths the word without any sound.
he can sometimes shout peoples names out etc when he sees them and he has strung several clear words together at times too but other times he cant get a thing out.
his most memorable phrase was "drawing a picture" when i asked him what Barnaby bear was doing, he was indeed drawing a picture.

its quite frustrating as i know he can say certain things but most of the time lacks the coordination to get his tongue, lips and vocal chords all working together at the same time!

He was talking about areas of damage know he has damage in couple of areas by this time was going over my head and had ds screaming after his swan dive from chair

glittery that's ds problem to can just not cordinate his face muscle to get the right shape