Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Paed appointment today, discussing fragile x and autism - help!!

26 replies

Kelly1978 · 13/03/2006 12:10

after four multidisciplinary sessions ds finally saw the paediatrician today. I feel so relieved that she really understood where I was coming from and they do think he has sn. Though part of me feels Shock that he does have a problem and it isn't just my imagination.

Now they are now struggling to identify what he has got. They are testign for hearing, chromosomes and fragile x. Also epilepsy, as he has blanked out periods, but the paed agrees with me that this is more than likely behavourial. He does have a lot of autisitic traits. The difficulty is that he doesn't have all of them - he uses gesture and he has good eye contact. So they are not sure what to think. Is it possible to have autism but not all of the traits?
The paed is asking me what I think and I don't know what to say or to push for, though I'd like to push for a definate dx of some kind in the hope that it will be easier to get help for him. we have to go back in a few weeks for a onclusion meeting, and the test results wont be back in time neither.

OP posts:
Kelly1978 · 14/03/2006 13:38

He was seen by the HV and a nursery nurse who create the applciation which is then reviewed by the multiprofessional team who decided if he needed assessment.

he then had four x 2 hour sessions (weekly) with a multi disciplinary team, where he has been assessed by early years, speech and language, etc. I can't remember who they all were, but they did so many tests with him, and lots of observation.

followign this we had a session with the paed which lasted nearly two hours again, with yet more tests and asking me all questions under the sun! Smile

Now we've been referred for blood tests, hearing tests (no problem, but to rule it out), ecg (also no problem, putting this one off).

We have a consolidation appointment in 3 weeks, which will involve all the professionals, the paed, and my HV and the nursery nurse who originally met with us. The bloods won't be back by then anyway, but the plan is normally to give soem sort of idea or a dx by then and that appointment is really to sort out what help he needs etc. So at this point I really felt that they should have a better idea!

I am hoping that maybe they do have a fair idea and aren't telling me, or at least will have when they go through it all again - at the moment they have pages and pages of reports, which the paed has seen, but I haven't.

OP posts:
New posts on this thread. Refresh page