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Strange paed appointment

8 replies

sphil · 31/10/2005 21:51

Today we went for our first paediatrician appointment for DS2 since January. We haven't had one in our area for ages and the man we saw back then was a locum who'd been hauled out of retirement - not ideal! Anyway, we went loaded up with his picture symbols and favourite books (DS2 doesn't take kindly to being assessed and ignores anything unfamiliar.)Goddamit, I'd even worked out which songs I was going to sing (he communicates best through songs - makes great eye contact, fills in gaps, even asks for the ones he wants, whereas he's almost non-verbal otherwise).

Anyway, she talked to us for a while while DS2 played (kind of) with a nursery nurse and she watched him out of the corner of her eye. Then she suggested that we come back in two weeks to do the DISCO (Diagnostic Interview for Scial and Communication Disorders). It takes three hours and she only wants me and DH there, not DS2. She gave him a quick physical exam and that was it!

I have mixed feelings and want to know how you all would feel. On the one hand it was quite a relief not to have to go through the endless brick building and pointing tests that DS2 has done before. We have only just had the extensive BIBIC report done, which she had in front of her and had obviously read. She knows we are keen to get a diagnosis because we want to get as much help for him as we can. And we'd told her that he doesn't perform well in assessment conditions.

On the other hand I found it quite odd she didn't really look at him at all. She is being trained in the use of the DISCO (great name isn't it?) and says it's a good diagnostic tool for a child who is something of a mystery (!) We won't get the results until Jan, because she has to take them to London and consult with the autism experts she's training with. She didn't tell us where she was training, but I looked up the DISCO on the net and it's accredited by the NAS so must be OK. I can't help thinking that we may be helping her get her Phd or something!

Having said all this, I like her. She was kind and gentle with DS2 and she seems to know her stuff.

So have any of you heard of the DISCO? The non John Travolta kind? And what would your reaction be?

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hub2dee · 31/10/2005 22:13

These are all issues I'm unfamiliar with, sphil, but re: the person you saw, there should be absolutely no problem clarifying her status / qualifications by either asking her directly, or contacting her receptionist etc. if you felt that was relevant / useful etc. No point 'just wondering' about it IYSWIM.

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Saker · 31/10/2005 22:43

I can understand that you feel that she should have given him a thorough assessment. However I can also see from her point of view that she might have felt there was little to be gained given that she had a recent report before her and you had already told her that he would not respond well to assessment. I often feel frustrated in these types of appointments that they don't see the "real" Ds2 and I wish they could shadow me for a day instead. Often I am there saying "he doesn't normally do that" or "he often does such and such" and then doubting it myself because he's not doing it then.

I can understand why you feel a bit short-changed but if you like her, I would be inclined to see how it goes with the DISCO and how you feel about her after a longer interview.

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coppertop · 01/11/2005 09:45

When ds1 and ds2 each first saw the Paed the appointment was fairly similar to the one you described. As it was a first visit we had to answer lots of questions about their general development and behaviour while the Paed watched them out of the corner of her/his eye. I'm guessing that as you'd probably already done this with the locum Paed that the 2nd Paed already had most of this information.

There was also a very brief physical examination at the end - listening to their chest, measuring their head size etc.

We weren't offered a DISCO (I can't type that word without hearing that 70's song!) but I've heard it can be useful. I can understand your worry though about not wanting to be used as guinea pigs to further someone else's career. It sounds as though the results will be double-checked for you though so that may well be an advantage.

H

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Davros · 01/11/2005 22:48

Yes, I have heard of DISCO, it has a good reputation. I have been known not to take DS to various appts as i spend most of the time talking about him.

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jayzmummy · 01/11/2005 23:03

We had the DISCO assesment done for our Dx of Ds2.
It was performed by a CP who had worked alongside Lorna Wing at Elliot House.
The assesement is very long and covers every aspect of your childs development to date.
We paid privately for the assessment and the CP stayed with us for the whole day in our own home.
He was able to observe Ds whilst asking us the questions. It far more relaxed than sitting in a pokey office worrying whether the childminder was coping with Ds home alone.
The NAS are able to give you a list of CP's in your area who will perform the DISCO either through the NHS or privately.

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MrsForgetMeNotFul · 02/11/2005 00:53

yes-the DISCO is what they used to diagnose both my boys...it is very in depth...and it was actually completing it for ds1 that started me 'wondering' about ds2...as everytime she asked me a question ds2 sprung to mind...when i was there about ds1!

when we eventually did the DISCO for ds2...she wizzed through it...as by then she had met ds2 many times through me deliberately tagging him along to ALL ds1's appointments...so she had a VERY clear picture of him...and finally agreed a diagnosis...despite the year before 'sitting on the fence' when as she says she felt she was 'piggy in the middle' between us as parents and the then head/senco of their school (who insisted HE WAS NOT AUTISTIC!)
I cursed the paed then for listening more to the school than to me...hence me taking him to all ds1's appts....

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sphil · 02/11/2005 22:17

Thanks everyone. Jayzmummy - what I am concerned about is that our paed doesn't want to see DS2 at all, she just wants us to do the interview. As I said in my previous post, we have a detailed report from BIBIC which we only had done in August, so maybe she feels that's enough? Still think it's odd though! There are areas in which he's improved a lot since August - his attention span is much better and he'll now participate in adult-led activities. He's also making his wishes known more clearly. Oh well, we'll wait until the 22nd Novemebr and see what happens at the interview.

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Davros · 02/11/2005 22:25

Hmmm, I think he should see your DS for this very important assessment. It doesn't matter how well you can describe something, there's nothing like someone seeing with their own eyes. What about the idea of having it done at home?

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