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Behaviour/development

So, CAMHS won't help us. What can we DO about an 8yo who wants to die?

77 replies

TheCountessofFitzdotterel · 03/06/2015 11:57

Yesterday ds1 had an assessment with CAMHS and they said they couldn't offer us any help, because what we were already doing as parents was fine.

Today a lucky young person on their driving test got to demonstrate their emergency stop for real when ds pulled away from dh and stepped out in front of a car (our school is round the corner from the driving test centre).

I'm at my wit's end. All I came away with was a reading list of books about helping children with low self-esteem. Which of course I have ordered and will read, but I kind of hoped someone with actual experience and knowledge would be able to help, y'know?

I have hunted high and low for private counselling which we would happily pay for but it's hard to find anyone who will work with children this young (the ones that say they do children mostly seem to start at 10).

He's a lovely kid, has friends, hobbies, empathy, is very bright, but massively oversensitive and emotionally much younger than his actual age.

I can't believe that actual repeated attempts to self-harm, plus impossible behaviour at school (it was them who referred him to CAMHS) - oh, plus episodes where he thinks I am someone else/a monster in disguise and am trying to hurt him - are not considered enough to actually help us. What do we do? Other than what we are doing now, trying to parent him well and keep him safe?

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Ashbeeee · 03/06/2015 13:08

Hello, firstly Flowers.

Does this help re other places to try?

www.mind.org.uk/information-support/guides-to-support-and-services/children-and-young-people/useful-contacts/

Also worth going back to your GP

Wishing you all the best with your little one xx

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TheCountessofFitzdotterel · 03/06/2015 13:09

Thank you x

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FenellaFellorick · 03/06/2015 13:11

I would go back to the GP and insist that a full investigation is done to find out why he thinks you are a monster in disguise trying to hurt him. That is way beyond low self esteem. It is very worrying I am sure. Thanks Shout, shout and shout again. He needs someone to fully investigate and help him.

I agree that contacting mind and running it by them is a good plan.

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blueistheonlycolourwefeel · 03/06/2015 13:19

My son has seen a psychotherapist who specialises in children.
We found her privately.
She's been very helpful.
I didn't get Cahms involved but that's because I knew it would take ages.

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ArthurMcAffertyhastwocats · 03/06/2015 13:22

I'm sorry, this sounds terrifying for
you.
I can't help but I know a friend found Young Minds very supportive when her ds had problems of a different nature. They are a dedicated mental health charity for young people. Worth trying, perhaps?
I hope things improve for you and for him soon.

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TheCountessofFitzdotterel · 03/06/2015 14:25

Thank you very much for the suggestions.

Blue, how did you find your psychotherapist? (And I don't suppose she's in Yorkshire by any chance?!)

Young Minds looks good. I'll give them a call.

The CAMHS people thought the thing where he thinks I'm someone else and trying to hurt him is overthinking rather than delusion - I tend to think they're right, and he's basically argued himself into a 'how do I know anything is real?' state, but he is genuinely frightened and it's tricky to deal with and I can't help thinking there must be people out there who understand this kind of thing. The first time it happened it was utterly terrifying because we couldn't get through to him and he tried to climb over the banisters and jump off (and it's a long way down with a stone floor at the bottom) but then he came round almost instantly and by the time we got him to the out-of-hours GP he was able to talk about it quite sensibly.

It's difficult because it's a lot of issues to unpick - behavioural and mental. They did at least say they didn't think he had ASD (which we knew, but school weren't entirely sure) so that's one thing off the list of possibilities.

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blueistheonlycolourwefeel · 04/06/2015 07:33

I googled child psychotherapists in my area (not Yorkshire, Midlands).
I met with her for 3 months before I introduced her to my DS.
I am sorry you are having such a tough time. Thanks

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Goldmandra · 04/06/2015 09:00

episodes where he thinks I am someone else/a monster in disguise and am trying to hurt him

I know two children who had episodes like this (one is my own DD) both of whom were later diagnosed with HF ASD after long and thorough neurodevelopmental assessments and both were at first considered to be unlikely to have ASD. Both children have been left with mental health problems because their symptoms were ignored for a long time.

For that reason but also because he has put his own life at risk more than once, I would ask for a second opinion from CAMHS and push for a full neurodevelopmental assessment before anything is ruled out.

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TheCountessofFitzdotterel · 04/06/2015 17:49

Yikes, Goldmandra.
Well, after what has happened today I don't think school are going to be content to let it lie. I won't go into too much detail but he has been very violent (which is a new level of trouble) and writing 'I want to die' on the floor. He is excluded till Monday and missing school trip tomorrow.
What a disaster.

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KittiesInsane · 04/06/2015 17:56

My DS had episodes of the same thing (suspecting me of being an alien who might kill him) aged about 11, Countess. He has ASD, and OCD as well, so obsessive and intrusive thoughts are kind of a feature of our lives.

I think you need to get back to CAMHS and say very forcefully that what you are already doing is NOT helping him, and in fact seems to be allowing him to get worse. Don't be brave on the phone -- let the panic come through and make sure they know you can't cope.

I inadvertently made DS's OCD much worse by trying inexpertly to help reassure him. It was a crap time and I feel for you hugely.

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msrisotto · 04/06/2015 17:56

I'm sorry CAMHS weren't helpful. I'm guessing they didn't want to medicate a young child, but couldn't they offer therapy?

If you do decide to go private, please check your therapist is properly qualified. They should be registered Here, you can also search for a therapist there.

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namechange7711 · 04/06/2015 18:26

My DS behaved very similarly to yours at the same age. He must have jumped in front of a moving vehicle about 30 times; jumped off a window ledge (I caught him) and could not switch off the voice in his head (who he thought was God) telling him to kill himself 24 hours a day.

CAMHS did see us for several months, however they never took the suicide attempts seriously because they had the view that a child of that age cannot really want to kill themselves. (The way they explained it to me was that a young child cannot really understand the concept of being dead forever; saying they want to be dead is just their way of expressing their overload / distress / pain about a situation they are in.) They taught DS to name his emotions and we learnt to discuss things openly as a family. However, I never really felt they got to the root of the problem.

And then I had a Eureka moment, when I realised that DS' mood slumped every time I gave him a prescribed anti-histamine for hayfever/eczema. Turns out that in a few cases those medicines can cause suicidal tendencies/delusions/hallucinations etc. I'm just mentioning it in case your DS is taking any medications / supplements etc. It would be worth checking the list of possible side-effects if he is.

DS has been fine since coming off the medicine. He's still over-sensitive, creative, highly-strung; but that's just him. The medicine just pushed him over the edge.

You have my huge sympathies - it's a really horrible thing to go through and I hope you get to the bottom of what is causing it soon.

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Ashbeeee · 04/06/2015 21:23

countess. Huge hugs, sounds like a really horrible day. You need help straight away. Do you Or other half have access to an employee assistance programme? Mine were really helpful, offering me a 24/7 support and advice plus access to counselling when we had a child related mental health issue to address (I was in bits, so can only empathise with you right now). Private healthcare (if you have it) can find a suitable person to assess. If you don't and are desperate, and can stretch to it (our initial appointment was a whacking £500 for a priory hospital consultant but he was the dogs) call one of the healthcare companies (I use PPP) . they provided immediate advice from a specialist team before we even got a specialists appointment, which was really reassuring. It's so unfair and wrong that CAHMS isn't offering this right now, but their funding has been decimated. Agree with getting a second opinion. Please make a GP appointment and insist on a referral. Arm yourself with the NICE guidelines before you go so that you are not fobbed off. I'm not sure if it's the right thing for you, but the advice I was given by PPP during our darkest days, was if you are really worried, go to a&e.

Maybe tomorrow instead of the school trip you can take time out together , nice and calm. A walk in the countryside, away from noise, pressure and people. Just you and him, chilling, enjoying the sunshine. A picnic, simple stuff. Being. Just taking in the air, looking at trees, whilst you wait for the medics to help you all.

Flowers

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Goldmandra · 04/06/2015 22:06

Don't punish him for what happened in school. He is clearly struggling and trying to communicate something with this behaviour. You and school need to listen carefully and try very hard, working together to figure out what it is.

He needs to know that you are on his side and want to help him.

If school think he may have ASD, find out more about what's behind that. Read about the subtle presentations, especially in girls because some boys present like that too.

Ask school to share their records and observations with you as they should have done some to try to identify triggers to his behaviour.

I'm sorry you're going through this and even more sorry that CAMHS haven't helped. I strongly recommend you ask for a second opinion because this is extreme behaviour and you need someone to help unpick it and work out the reason behind it.

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Silverturnip · 04/06/2015 22:16

Just to say if you do speak to young minds, the first line is a support worker but you can also get to speak to a child mental health specialist over the phone also if they put your case forward. Ask them to do that.

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Almahart · 04/06/2015 22:25

Wouldn't dream of diagnosing over Internet but this is ringing HF ASD bells with me too. How many appointments did you have with CAMHS? Did they do proper assessments to rule it in or out (would prob have been something called ADOS) or was it a more general 'in my opinion' sort of thing? What specifically can school point to that they think indicates ASD?

It sounds as if your school is very on the ball which is good, I would definitely talk to them again

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Almahart · 04/06/2015 22:26

Also as others have said definitely push for a full assessment

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Goldmandra · 04/06/2015 22:31

Just realised how scaremongering my first post sounds - sorry.

The problems these two children have been left with are due to their schools not accepting that they had difficulties, even after diagnosis and persisting in putting them in situations they could not cope with, despite advice from professionals not to do so. I'm not suggesting that your DS is headed that way. His school sounds much better.

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Selks · 04/06/2015 22:39

OP I'm sorry you are having these troubles. There may be good reason why CAMHS have not offered therapy for your child, as it may not help. Sometimes individual work with a child displaying problems of this type can sometimes make it worse, as the child can feel that they are a problem, or gain negative attention from it.
But it sounds like it would have been helpful for them to at least offer a bit of support for you in how to manage these difficulties. I would go back to your GP and ask for a re-referral for that reason. I say that as a CAMHS practitioner. If your CAMHS has a 'tier 2' service (CAMHS in most areas being in two tiers - tier 3 very severe problems, tier 2 less severe) then your child would seem suitable to be seen by them. Tier 2 CAMHS is also sometimes known as PCAMHS or primary mental health.
Any speculation on this thread that the child might have ASD or anything else is unhelpful if that has already been ruled out.

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Almahart · 05/06/2015 08:33

Selks, we simply don't know whether ASD has been thoroughly investigated or not. The OP reads as if this was the initial assessment appointment, from which her DS would be referred on to treatment/investigation or whatever deemed suitable. In that context I wouldn't close it down as a possibility as ime it can depend on who you are seen by and what their training is

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Goldmandra · 05/06/2015 09:32

Any speculation on this thread that the child might have ASD or anything else is unhelpful if that has already been ruled out.

It is entirely possible that ASD has been ruled out inappropriately by a practitioner with limited knowledge of the condition. This is, sadly, not unusual and it is entirely appropriate for the OP to ask for further assessment. I could name you ten parents off the top of my head who would have found this advice very useful when their child's difficulties were first raised with professionals.

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TheCountessofFitzdotterel · 05/06/2015 10:15

Hello - just quickly as I am on phone & with ds.
The CAMHS assessment was just the general initial one.

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Selks · 05/06/2015 17:03

"It is entirely possible that ASD has been ruled out inappropriately by a practitioner with limited knowledge of the condition."

It's more the case that ASD has to be "ruled in".....it's usually the case that for ASD to be considered there has to be supporting evidence or at least possible indicators from others such as school, ed psych, paediatrician, other professionals. With no supporting indicators - which if present should be described in the referral - then ASD is less likely to be felt to be evident.
I don't doubt that sometimes a practitioner with limited knowledge of ASD might not pick up on possibly subtle indicators, but other evidence is always needed - it's not just down to the one practitioner, although it might feel like that.

If the Op wants ASD to be considered then I'd suggest that they speak to school and any other professional involved, see if they have spotted any possible indicators and if there are, ask them to do a further referral or supporting letter in to CAMHS.

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Goldmandra · 05/06/2015 17:46

The OP has already indicated that the school has mentioned ASD.

If all parents waited for other people to back them up before asking for assessment, there would be a lot more children around without the support they need and there are far too many already.

Yes, lots of professionals contribute to the assessment process but it is entirely appropriate to consider or request an assessment based solely on the concerns of a parent or a teacher.

Also, a neurodevelopmental assessment does not solely consider ASD but a range of neurodevelopmental disorders and can be commenced for all sorts of reasons, not just someone thinking ASD is present.

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TheCountessofFitzdotterel · 05/06/2015 18:21

The main reason why ASD gets raised is the hypersensitivity but he's also very different from kids the school has had with ASD - he doesn't struggle socially (he loves group work because he gets to help other kids) for instance.
The school has the county's enhanced mainstream provision for children with social, behavioural and emotional difficulties so there is a lot of experience of SN among the staff.
I will have the reintegration meeting first thing on Monday when he goes back so it will be a chance to talk to school about what we push for next.
Today has gone as well as can be expected. I couldn't take him out (you're not allowed to if a child is excluded and anyway I wouldn't be confident of being able to keep him safe if he freaks and runs off) but he's played Lego and we did some Latin (I started doing this with him as a way to pass the time when they send him home and he is really enjoying it). Normally I don't let him do Lego when they send him home because of not wanting to make it a reward but this time I just needed to keep him occupied to keep him from getting upset.
I'm worried about what is going to happen when they do work at school connected to today's school trip but we can mitigate it by taking him to the same museum at the weekend. I did have a secret cry when I got a text saying 'the class is having so much fun they are going to be back 15 minutes late! '

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