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saw new paed today

4 replies

jenk1 · 16/01/2008 17:13

well.
she was nice.
BUT
she has disagreed with dd,s dx of hemiplegia. she says it is more hypermobility, she did not go into ASD but said that CAMHS are waiting to asess dd for that.
she said that she wants to do blood tests.
i asked what for and she said to check the chromosome although her facial features dont make me think its anything, so i said what do you mean and she said lets wait for the blood test results, could she be testing for fragile x here?

she has now discharged her and referred her back to her original paed, oh its getting very weary, its like dd is a hot potato thats being passed around.
she said if the LEa need a report then SHE will do it and not the other paed.

so there have now been 3 paeds involved and not one of them will stick their neck out and confirm ASD.
CAMHS are asessing for that which leaves me confused as ASD is a developmental disorder so surely a developmental paed would be the right person to dx?

OP posts:
aquariusmum · 16/01/2008 17:25

It sound like they are testing for fragile x, jenk, as they commented on my DS's large head and asked about any marks on his body before testing him for that (mind you, that's slightly different from facial features so not entirely sure but think that's pretty much the only one that shows up on blood test). 3 paeds - ridiculous, I share your frustration! We were fobbed off so much that in then end we got a private diagnosis on my DH's work BUPA: a very good lady called Dr Daphne Keen who does private work but is also a highly respected paed in autism at St George's Hosp, Tooting. Without BUPA though it is a lot of money, but if there were any way you could do that or ask grandparents to help?--- it made it a lot more difficult for the LEA to keep stalling, as they couldn't really argue with a woman of her calibre. Plus, she was not afraid to come straight out and diagnose after 1 hr talking to us and watching DS. None of this namby-pamby bloody 17 day assessment centre stuff, sometimes it is just obvious, but of course no-one in an LEA wants to give a definitive diagnosis as then this means they have to pay out ££££s! Whole system is mad. Isn't it said that the mark of how civilised a society is, is how they treat the most needy members of that society. Well ours is xxxxed then!Sorry for rant, but at least your lady sounds sensible!

jenk1 · 16/01/2008 17:33

ah thats maybe why she wanted dd stripped, i thought it was strange, she checked all over her body and i thought what IS she looking for, also she shone a torch into her mouth and seemed to be concentrating on her upper mouth and i thought that was strange too.

im going to kick off big time soon, im sick of this messing around, she either has a PDD or not.

she has something and i know they suspect it but dont want to dx yet.

its very frustrating though.

OP posts:
daisy5678 · 16/01/2008 17:35

CAMHS dx here, Jenk. The psychiatrists here are the autism experts/ specialists and do all the dxing and ADOS tests etc.

Has she had an ADOS?

hels9 · 16/01/2008 18:20

Maybe she was looking to see if your daughter has a high arched palate when she looked in her mouth? I think this is sometimes seen in Fragile X, but also in other conditions that can cause hypermobility.

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