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What would you do ....?

(12 Posts)
siblingrivalry Mon 18-Aug-08 21:36:22

I would really appreciate some advice on how to handle CAMHS. At the moment, I feel totally ill-equipped to deal with them and like a total novice.

Sorry if I waffle on too much!

Basically, dd1 is going through a dx for ASD. We have done the interview/questionnaire part and the doctor has seen dd a couple of times. She said it's
very likely dd has ASD, so she will be having the ADOS 2-way mirror part next.

That was about ten days ago and have got an appointment for the end of Sept. It's about a 6 week wait.
I know that in a lot of areas, the waiting list is far longer than 6 weeks,but that's not really my issue.I realise we are quite lucky within our PCT.

However, dd has had a terrible few days. Today, in particular,was awful. It would take far too long to go into it, but she has been running and hand-flapping much more, is often refusing to eat certain food,having loads of tantrums and her tolerance to loud noises is zero.

SOOOO... what I wanted to ask is : would you just sit tight and wait for her appointment at the end of September or would you ring CAMHS and see if they could find an earlier slot?

I'm not naturally assertive and I don't want to be too pushy if that will create problems. However, I don't want dd to have to suffer.

I suppose I would just like to know how other MNers deal with this sort of thing -you all seem to be so clued up. smile
Thanks in advance.

twocutedarlings Mon 18-Aug-08 22:46:57

I would, you dont have anything to lose. A friend of mine rang our local child development centre every day for 2 weeks to see if they had any cancellations, eventially they did LOL so it paid off.

siblingrivalry Mon 18-Aug-08 22:53:57

Thanks 2CD, that's given me the incentive to pester them.
DD is awake again now;she's so unsettled ATM. Took her to the cinema today and it's opened a whole new can of wormssad

How's your dd doing?

2shoes Mon 18-Aug-08 22:55:28

agree with twocutedarlings, i have no dealings with CAMS but presume they are like every other organisation. keep ringing them and I am sure in the end they will slot you in. good luck.

TotalChaos Mon 18-Aug-08 22:56:41

I agree with 2cd - no harm in politely asking if any cancellation appointments are available. if you don't ask you don't get. might not get you anywhere though - in my city the cancellation appointment supposedly just gets offered to the next person down the list anyway...

siblingrivalry Mon 18-Aug-08 23:03:56

Thanks 2shoes and TC. I've been given so much conflicting advice lately from RL friends and family -no disrespect to them, but they don't really 'get' why I am so worried. That's why it's so good to speak to those of you who 'have the t-shirt'smile

daisy5678 Tue 19-Aug-08 00:21:50

My J was first suspected as having ASD last August, after a previous dx of ADHD by CAMHS (we saw a new psychiatrist who suspected ASD on first meeting). She did the ADI interview thing throughout September and the results were so clearly pointing to ASD that she requested an ADOS. She knew what it would show but wouldn't do formal dx without the ADOS as that is how it's done here.

6 month waiting list here at least, I was told.

However, J got worse and worse and we couldn't access any support without the ASD dx, especially not from Social Services, so the psychiatrist pushed for the ADOS to be done earlier. Eventually got an appointment for the November (I think) but then it got cancelled on the day due to staff illness.

I called every few days asking for cancellations, but they're really rare for ADOS appointment as you need 2 ADOS-trained staff.

But our psych kept pushing too and we eventually got the ADOS just after Christmas.

I think if there's a reason why the dx is urgent e.g. to access more support, they will try their best to bring things forward. I also think that letting them know that you'll take any cancellations, even down to just getting a phone call at 9am and turning up an hour later, is a great idea.

I know how the waiting feels. It's awful for you as a parent.

Good luck x

daisy5678 Tue 19-Aug-08 00:22:35

Will having the ADOS earlier help her? Is that what she's anxious about?

twocutedarlings Tue 19-Aug-08 08:51:32

siblingrivalry - sorry i went off to bed after my post to your last night.

My DD is doing very well at the moment. She is always better at home. Its her birthday in 2 weeks so she is in the process of planning what pressies she wants grin.

The fun for us will start when she starts back at school sad although she will still be with same teacher (mixed R/Y1) there will obviously be lots of new faces.

As givemesleep says the key thing here is to try and get to the route of what making her anxious at the moment, the ADOS will obviously help you, but for now you need to find out what bothering her sad.

siblingrivalry Tue 19-Aug-08 12:19:41

Thanks givemesleep.DD isn't really aware of the ADOS -we told her that she will be talking and playing with the doctor so that she can see how she can help her. DD actually said she wants to do it straight away because she is fed up of being 'worried' as she calls it.sad

I think the problem is that she is going back to school soon (much like your dd, 2cd). The questions and concerns have already started. She will be going into the junior part of the school plus they have almost completed the new school which is being built in the grounds.

DD will start off in a portakabin for a couple of months, then move into the new school. I can't even bear to think about how she will deal with that! That's without the new teacher/new rules/different lunch time routine which happens in the juniors.

I think having a dx (or whatever the ADOS throws up) would help her at school - I feel as though she won't get the support she needs if they think she is 'just' stressed;etc. I have spent 3 years trying to get my concerns across to them. They have been supportive, but I'm pretty sure that they see me as an over-anxious parent grin

I hate to see her so anxious. She barely slept last night and has scratced her psoriais until it bled.

I took both dds to a soft play warehouse this morning (I detest them!) She was fine at first, but after an hour or so she was desperate to be alone and went off to watch the TV in a quiet corner. She's also refusing to eat any kind of bread now -it's too chewy. Limits her diet somewhat!

Thanks for allowing me to get it off my chest. MN is the only outlet I have these days-the support is incredible.

Troutpout Tue 19-Aug-08 13:10:06

Oh yes...i would definitely phone and try to get an earlier appointment Sibling. You haven't got anything to lose by trying have you?
Has your dd got funding for school? Will there be help for her to cope with the changes at school?

siblingrivalry Tue 19-Aug-08 16:17:57

No, there's nothing in place yet. As yet, the school are totally unaware of the possible ASD dx.
When things got really bad at the end of last term, they were actually really good about finding ways to help her cope. They have always seen her as being anxious and a bit obsessive, mainly because she has always been really passive at school.
I have a feeling that is about to change, though hmm. DDs tantrums and behaviour in public has changed dramatically over the last couple of months.

The teachers have a couple of training days before dd goes back to school, so I think I might ring up and see if I can set up an appointment with her new teacher and the head.

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