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drs not telling me anything, dont understand the letters :(

4 replies

saladsandwich · 23/02/2012 16:09

keep taking ds (3.2) to hospital appointments and stuff and they keep either saying nothing or just brushing my concerns to one side but when i get letters through the post... i'm guessing the type aimed at drs, like a report??

last week i got a report from the medical paed with a list of things that weren't mentioned whilst we where there things i feel are serious tbh, then today i have got his developmental report.

the last one (6months ago) said his language was at 24months, this has not changed so he is further behind but on the section for hearing and language they've put age appropriate???, his manipulative skills are 6 months behind, says delayed interavtive skills but not by how many months, says his self care skills are age appropriate but i know that nursery where sent a school action plan (no idea what that is) and they are working on self care skills as they are behind???

they have sent some blood forms for fragile x and karyotype? on the other forms it says global developmental delay. i dont know what anything means

OP posts:
ohmeohmy · 23/02/2012 16:33

Could you make an appt with the GP to go through it with you? Or call the consultant?

Lougle · 23/02/2012 17:07

Hi Saladsandwich, it's so daunting at the beginning, but you do get used to it.

Firstly, Global Development Delay (GDD) is the term used when children are young and it isn't clear what is causing their difficulties, but it affects more than two areas of development. So, if a child has difficulty picking up small objects or gripping things, etc. they would have a 'fine motor delay'. However, if they had those difficulties, weren't walking as expected and language was behind expectations too, then they would be considered to have a 'global delay'.

Some children with GDD will catch up as they grow older. Others won't. Some children will narrow the gap that developed between them and their peers; for others the gap will widen in time. Some children will go on to have a firm diagnosis (ie. Cerebral Palsy, Autistic Spectrum Condition, Fragile X syndrome, etc.). Other children will never get a firm diagnosis and will either be labelled 'GDD' or 'Mild/Moderate/Severe/Profound Learning Difficulties.'

About the language - the Griffiths Development Scale separates out the receptive language skills (ie. processing and understanding what you hear) and the expressive language skills (ie. saying and understanding what you want to communicate). Some children have a 'matched delay' ie. they are behind equally in both areas. Other children will have a 'mismatched delay' ie. they have difficulty expressing themselves with limited sentence length or vocabularly, but they understand what others say well. Other children are very 'verbal' but don't actually understand much of what they say.

The self-care thing is probably age related. The range of expectation of 3 year olds is very broad. Even without difficulties, some children of this age will still be in nappies and others will be dry day and night, etc. So although it may be behind what you and the nursery consider appropriate, in the grand scheme of things it may not be enough to be classified as 'delayed'.

Fragile X is the most common inherited intellectual disability in boys, and to a lesser extent found in girls. It is also very specifically identifiable in a test, so it is the first thing that is tested for. Karotype means that they are looking to see that his genetic 'code' is 46XY. That is the 'normal' code for boys. Girls are 'normally' 46XX. If the karotype came back 47,XY, +21, for example, it would tell the Dr that your child is a boy with Down's Syndrome. Karotyping is a very crude test. It literally tells them how many chromosomes are present, and which if any are missing or extra. It doesn't tell the Drs whether the chromosomes themselves are as they should be.

saladsandwich · 23/02/2012 19:52

thankyou for the explanations very helpful... i also think i will see the GP abut the medical stuff

ds's language is coming on but not fast enough to catch up, the paed thinks his social skills and imaginative play are behind because of the speech so i werent sure on the global delay thing.

the self care thing, its the paed thats told the nursery hes behind but on the report it says hes fine, toileting hes fine its things like putting coats on ect independence.

thanks again X

OP posts:
BackforGood · 23/02/2012 20:22

Your Nursery will have a SENCO (Special Educational Needs Co-ordinator) who will be able to help with some of this, and, where she gets stuck, she will have what's sometimes called an Area SENCo and sometimes an Inclusion Officer she can call on for further advice.
Also, you can phone the CDC (Child Development Centre) and ask them to explain anything you aren't sure of.
School Action / Early Years Action is a 'stage' of the SEN CoP (Special Educational Needs Code of Practice). where any educational setting cares for a child with additional needs, they need to record the work they do and fill in certain paperwork. If they feel he needs more help than others of his age with any particular aspect of his development, then that is what they will work on, and will record this on an IEP (Individual Education Plan), and have to record what level of support he is getting. School/Early Year Action is the first level of support.

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