GDD label

[roundthebend4]

Ds was orginally dx with this at 2 along with low muscle tone hypermoblity etc

But at almost 5 after finally seeing a neuro it turns out that he has Cp

But on his reports it still gets written that ds has GDd though now do put the cp first.

Yes ds is behind in some areas but i think lot of its down to fact he is pretty much non verbal less you know him to translate, he cant write as he struggles holding a pen properly due to pd and so far not reading as obviously been unable to do sounds etc

But he does know numbers,colours , letters of alphabet and i know from usng computer he can read some words

But im fnding when people see the GDd there over looking that when tested non verbally that his cognitive was within normal range ,So is there any way he can lose the GDD tag and just that his diffculties are down to his Pd and no speech

get him tested by the ed psych again? I know it will be repeating the ican stuff, which will be irritating but...

we not seen the Ep her ein Herts at all infact other than ican he has not seen one since he was 3.4.Herts went wth the Ican reports best thing i ever did was go see them

Its the community paed na dphysio ,ot etc they seem like the GDd ,as there like well its becuase he is delayed not becuase he needs differnt equmpent methods whch is the case

As your DS clearly does not have GDD but CP and a speech and language delay (common with CP) I think the only way you can change this tag is to kick up a fuss with each individual speciality. If they decline to drop the GDD tag ask them to define GDD, and then point out that his cognitive ability - as defined by their own tests - say he is not! I would get very stroppy and push the issue as Ds risks being wrongly labeled and may miss out on appropriate schooling, as his speech delay will mask his true ability.

The HV defined my DGS as GDD very early on and my daughter and I were devestated, we knew CP was on the cards but could see no reason for intellectual delay. Thankfully he has no delay in that area and no-one has mentioned it since.

at first it fitted him but a stime went on it was obvious more than GDd even neuro saw that in less than 5 min ute sthen confirmed with mri etc

Think i will tackle it when next meet with community paed and going to pull the ot and physio up .

trouble is nhs did verbal testing and lol he cant talk so yes he is going struggle but non verbal tetsing out him as a little boy with at least normal cognitive devlopment

I wonder if the data protection act could help with this, have a feeling there is something in there about being able to challenge inaccuracies in medical records.....