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cmuir

CAMHS don't take son's life threatening behaviour seriously

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Hi

 

My 6 year old is quite a boy! He's like a little Jekyll and Hyde (he's an absolute sweetheart one minute and like someone possessed the next). He has been since he was very young and this is well documented by the nursery he attended aged 3. His consultant is of the opinion that he may have a mood disorder. She herself as described him as displaying psychotic tendencies, but is puzzled as he's apparently very young to behave in such a way. Types of things he's doing are saying he wants to die because he hates living, gets depressed, says his friends all hate him, wraps shoelaces around his neck, headbangs, cuts himself, tries to run off, has deliberately walked behind my car when I was reversing it out of the garage, etc. Back in September I felt my hands were tied - CAMHS had told me to attend a programme by Carolyn Webster Stratton called the Incredible Years Programme. Makes me so mad, because they didn't tackle behaviours like the aforementioned. Covered things like 'how to play with your child' - all things I found incredibly patronising!!! When I repeatedly questioned them about it and told them how displeased I was, the response was and still is that R pushes my buttons. He gets an emotional reaction because I'm his mum and that fuels things. I'm not naive (far from it), sure on occasions that's true, but I'm genuinely not getting that a 6 year who gets depressed and says he wants to die is pushing my buttons! Had a follow up appointment with CAMHS and I vented exactly what I thought of the programme/unit that my son and I attended and how his potentially life-threatening behaviour has not been taken seriously. I genuinely don't think they could cope or indeed know what to do, nor do I share their belief that R is simply pushing buttons - his moods change so quickly and it just doesn't make sense. All well and good studying and reading out of books, but they seem to fall well short of practical experience. I've reached the stage where I have pointed out to them that I have been consistent in reporting how things are (they should be taking me seriously) and that I will not take the blame for it (being emotional or neurotic), but R's behaviour is sometimes so extreme/dangerous that I cannot guarantee the safety of my son (that petrifies me). I've also pointed out that I will personally hold them responsible if, god forbid, anything happens to R! What next? What do you do when no one takes you seriously? I genuinely suspect (as does his consultant) R has something on top of AS eg Bipolar. Ex-social worker confided that she'd worked with adults with mood disorders and that she thinks R may be the same - also said that she never felt at ease taking R out eg swimming (he ran away from her/bus drivers at a terminus all had to help look for R, he also stood in middle of road refusing to move out of the way for an oncoming bus). Breaks my heart that my little fella can behave in such a way. I love him dearly and desperately want to help him. Can't help feel he must be in some kind of turmoil, but yet, I'm helpless. I know that it's unlikely biopolar or the like would be diagnosed in a child so young. I've heard that it's generally teenagers. Doesn't help me in the meantime.

 

Any advice gratefully received.

 

Caroline.

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hiya cmuir

 

 

>:D<<'> >:D< >:D<<'> >:D< sounds like you and me are in the same boat.

my son is 6 -7 in june ,having similar problems.....

i also have been on the webster stratton ....lol...do you know theres advanced ?-yep they trying to send me on that

 

ive spent all weekend writing letters or rather typing them......my next camhs is in march -this is after they discharged us last year after dx.........id wrote some letters since and to my gp so now ive got another one.........im taking social worker along this time.

is your son on any medication?

mine isnt,in fact they have never even disscussed it.

:)>:D<<'> >:D< >:D<<'>

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Hi

 

Thanks for your reply.

 

No kiddo isn't on medication. That was one of the reason's he was on the Webster Stratton Programme - they were going to assess and see if he'd likely benefit. Thing was, that although they saw snippets of how he can be, he was actually pretty good there. Wasn't until I got him out the front door that I got the brunt of it! In addition, I repeatedly asked staff to make contact with R's ex-social worker and they didn't. Needless to say, that went into a rather lengthly programme evaluation letter! They were far more interested in covering trivial details such as what my pregnancy was like?, was it planned?, what was my childhood like? and nonsense like that, instead of speaking to a key unbiased professional who saw everything they was to see with R (and was on the receiving end once of twice!). Makes you wonder.

 

Didn't know there was an advanced programme. They can stick that where the sun don't shine if they ask me to go on it! I've never came across such nonsense. A lot of it is common sense - I've never been so patronised covering topics like 'how to play with your child'. I actually emailed Carolyn Webster Stratton to ask about the suitability of the programme for ASD kids. Whilst she said it can be beneficial, the research is based on NT kids and not kids on the spectrum. I recall no making myself popular when showing that email around at the parents group on the programme!

 

C.

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lol ....haha yes i think i remeber your posts about you e mailing .

 

maybe mine wasnt like yours -i didnt have my son there-but yes there was a crehe but i had someone at the time to look after him...either that or he was at nursery or school.

 

 

do you see camhs at all? xxx :robbie:

 

 

please forgive me -DOH asking that question -seems to just flow out of my mouth ........its cause ive just spent all yesterday and today writing a letter to them . :rolleyes:

Edited by rainbow queen

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Hi >:D<<'>

I am sorry to hear how pathetic the system is over there when you have a crisis like this. In this case I would go to the hospital or GP and demand an urgent review by a Paediatrician, cut through the red tape queue jump make a scene........ !! Do not back down - be a pitball terrier.... if this is what you have to do to be heard - do it. Keep a diary of food and behaviours. Avoid caffeine drinks coca cola, chocolate, red and green food colourings and Preservative 282 and 211. Keep his routine regular and simple. Routine, routine, routine prevents major meltdowns. If he is in meltdown mode give him space and a safe place - remember 'no reaction, reaction during these times its best you walk away - no eye contact - he needs this in order to calm down..

 

Personally in my experience the Paediatiian is the best because this doctor is going to become like a family member- ours is. When meds are changed he is a phone call away so I can describe the behaviours to the Paediatrician and he may adjust the doe over the phone or ask you to come back asap. He relies on your diary of behaviours - letters from teachers and his own observations to monitor what is setting your child off. A referral to a Behavioural Optometrist is important and Occupational Therapist and a Speech Therapist. The Paediatrician will refer you to all of these as well as and Education Psychologist for Assessments. This sounds a lot but one step at a time you will see all the Paediatrician may find that your child can be meds free if it is a food allergy.

 

If still aggressive and harming self or others he will possibly change the meds or alter the dose. Just because medication works for one child doesn't mean it will be right for another. Listen to the Paediatician ring him if behaviours have gone troppo it may mean your child needs more or less medications or a change to another type altogether - don't delay, sounds like this is why you need an urgent review. He may also recommend two medications. The Paediatrician will get you priority referrals to Specialists for food allergies this book Sue Dengate 'Different Kids' will help you asap on things to avoid.

 

Is his bedroom calming and soothing - get rid of things that wind him up - especially clutter. Soft blue furnishings are good- avoid red its proven to over stimulate kids like this, my sons preschool proved this when they had a colour theme day each day for a week. When they got to the colour red - clothes decorations etc all red, all the kids were wired to the moon. :lol:

 

Things will settle once your child needs are being resolved. Be gentle with yourself, you are doing great. Your child is screaming for help but he can't tell you what's wrong soon he will be back- with reassurance that you love him and are going to find out how best to help. Don't yell its not his fault...... he needs a good understanding Paediatrician. My son always feels like he can walk on water after each visit with ours.

 

This is a life long process the Paediatrician will also visit the school and reommend all the necessary paperwork and procedures for one- one support at school - so the school get the necessary funding etc.

 

Goodluck >:D<<'> >:D<<'> >:D<<'> >:D<<'>

 

Love

Fran

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Hi

 

Thanks Frangipani for your advice.

 

Rs room is painted blue and I have lots of sensory items eg plasma ball, laser cosmos, etc. He actually seems to find his room to be a calming place.

 

He's not on medication, partially because I myself am reluctant (but not opposed to it). Thing is I had to battle to get him on melatonin! CAMHS won't prescribe anything else because they seem to be of the belief that I'm the cause of a lot of his behaviour eg Clinical Psych suggested going for a walk with my son because he tried to trash her consultation room. I warned her in advance that he'd try to run on road and he tried just that. She said she felt uneasy and asked to go back to somewhere safer. Yet, her report says my anxiety caused that - because I was on my knees holding onto him to stop him going on the road in front of an oncoming lorry! Can't win.

 

I haven't made myself popular as I'm a big believer in saying what I think without mincing my words in addition I don't always agree with them. I believe because of this they actually aren't keen to get involved (that and coupled with the fact I don't think they have a clue!).

 

Been there with the diaries, etc. R simply doesn't get fizzy juice, coloured sweets, etc.

 

I won't give up on this because it's only a matter of time before he causes himself some harm (at Hogmanay he accidentally broke his thumb, then during a meltdown later on that day, he tried to break the rest of his fingers and bruised all his knuckles - that ain't normal).

 

C.

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lol ....haha yes i think i remeber your posts about you e mailing .

 

maybe mine wasnt like yours -i didnt have my son there-but yes there was a crehe but i had someone at the time to look after him...either that or he was at nursery or school.

 

 

do you see camhs at all? xxx :robbie:

 

 

please forgive me -DOH asking that question -seems to just flow out of my mouth ........its cause ive just spent all yesterday and today writing a letter to them . :rolleyes:

 

 

Hi

 

No problem about asking questions. Yes, we have seen CAMHS on about 6 occasions, but I'm afraid I'm not complimentary about them at all. They see what they want to see!

 

We no longer have a social worker because she'd worked with us for nearly two years which apparently is longer than the norm. She was then assigned to work with other families.

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Hi Caroline,

We are in the exact same situation. Ds has made a number of attempts on his life, each one getting more and more serious. The last one was quite bad and if we had been a couple of minutes later I hate to think what would be the end result. I have been told that becaue he comes out of the suicidal state it is just a case of being extra vigilant. I fail to see how that can be successfully achieved with a highly impulsive child whose mood swings like a pendulum!!

 

He is on Resperidone and his dose has been upped so he has some in the morning as well as evening. I mentioned again about dh dad who was bi-polar and killed himself and was told that because of the tendencies displayed he was on the meds that should ease anxiety as there are bi-polar concerns.

 

The meds are helping but I feel that in agreeing to meds it now seems to be the front line course of action.

 

After his last episode about a month ago he has been quite calm and stable. He is doing really well at his unit and has joined the local swimming club. He is coping really well and trains at least 3 times a week. It is great for him to have something to be positive about but it requires coaches and me to really push the positive and squash his natural negative!!

 

I have been no help but just wanted to let you know that you are not alone in getting no direct help from our local CAHMS. I hope we both get some results to help our boys!!

 

Carrie

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I've recently come to the very reluctant but certain conclusion that CAMHS can do more damage than help. Before we relocated down south my son had a fab consultant at CAMHS who was willing to stick his neck out to help his patients. Since we moved it has been a completely different story!

 

I won't go into details because we are going to tribunal next week. However, what I will say is that CAMHS are under enormous pressure from their own management, and from the local authorities. Their main aim is to get kids off their files as quickly as possible and to keep spending and services down to a minimum. In our case this has resulted in my son's CAMHs consulatant compromising her professionalism and duty of care. Up until now it has been irritating but no more than that, but she has now made comments based on assumptions and to fit in with the remit of the LEA. I am poised to take her to task as soon as our tribunal hearing is over and will never be taking my son back to see this particular consultant.

 

Flora

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Hi.Whilst I am aware that the service provided by Camhs does vary I thought it worth sharing my experience.My family has consistently recieved excellent support and input which it is anticipated will continue for some considerable time.Camhs are not all bad...even if there are financial pressures.There are professionals who are comitted to supporting families and who provide excellent care for children and teenagers.Karen.

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I know someone whose son jumped in front of a bus and was asked if the incident had drawn blood - the bus just managed to stop - and so was told that seeing someone was not an emergency.

 

While it has to be accepted that not all CAMHS units are getting it wrong - Webster Stratton was never designed for our children and I to have an e-mail :rolleyes: from the creator of the program - it also has to be accepted that not all CAMHS units are not getting it right.

 

I think that parents should be aware that like everything else CAMHS is a postcode lottery.

 

A very wise and wonderful lady who used to be the back bone of ASD UK used to sign herself 'knowledge is power' was correct knowledge is power and knowing that CAMHS can be a postcode lottery is knowledge that many parents require imo.

 

Cat

Edited by Cat

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