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9 year old with paranoid schizophrenia and autism

(161 Posts)

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HopeAndFaith86 Wed 21-Aug-13 10:41:23

Mumsnet.

I am parent with of a 9 year old who has Paranoid Schizophrenia as well as Autism, I am going to keep things a short as possible, if there is anything else you’d like to know don’t hesitate to ask me but for now I will just give you some examples of his behaviour

His Schizophrenia (A few examples)

Pacing up and down with his hands behind is back mumbling to himself
Whispering to himself
Conversations with himself (but he is always fully alert, if I call him or speak to him he will answer immediately)
Bizarre thoughts and beliefs, the belief he has at the moment is that the devil is coming for him at night (sent from my fiancé, my daughters Dad who he believes works for the devil – due to this thought my fiancé is living somewhere else) my son is also not sleeping at night.
Voices telling him to harm himself and others, including me (which he is acted on in the past) he has also reported of them telling him that he is stupid and bad (whenever he hears these voices he hits himself in his head with the palm of his hands in order to try and get rid of them) whenever they tell him to harm his sister he will come and tell me straight away, he tells me that he does love her but is scared to go next to her because she has done nothing wrong and she is small.

In terms of medication

He has been on numerous anti-psychotic medications, which have never completely stopped what is going on in his head, he is currently on a medication caused (Quetiapine also known as Seroquel) I was sceptical of giving it to him at first after hearing his Psychiatrist tell me that he doesn’t usually prescribe it to children under the age of 13 whom are suffering from Schizophrenia but it is one of the most effective drugs he prescribed a dose of 25mg with instructions to give it twice a day, once in the morning and once before bed, his morning dose was putting him straight back to sleep and when he did wake he would be drowsy for the whole day, I called and notified the Psychiatrist about the effect it was having on him, and I was told to half the tablet in order to lower his dose to 12.5mg, which he just making him drowsy and dribble, I have to wait other 3 weeks to see the Psychiatrist. again.

CAMHS have offered a lot of support, but I feel as if they think the answer to his Mental Illness is to admit him into hospital, he has been in hospital 4 times this year and each time it has not helped him one bit, they have allocated him a care-coordinator and she is also very helpful.

His Autism (A few examples)

Showering and changing his clothes 4 times a day.
Bed covers have to be changed every day
He eats the same food every single day for breakfast lunch and dinner and none of the foods can be touching one another (Melon Slice for breakfast, two crab sticks sliced into four pieces and 2 and a half green runner beans, for dinner, none of these can be touching one another)
He will look around the house for things to clean.

I gave birth to him a 6 days after my 17th birthday, his father was my first ever partner we were together for 4 months before I got pregnant, a few days before I found out I was going to leave him but I didn’t have it inside me to tell him, I was weak and very scared of what is reaction would be, then I found out I was pregnant the thought of aborting my unborn child never crossed my mind I was going to face up to my responsibility, I told his father that I was carrying his baby, he was happy I had this dream that me and him would now be happy together, I broke up with him when my son was 3 months old, he said he wants to be in his life and he will always be there for him. To cut a long story short as soon he realised that my son was a little different from other children his age he stopped visiting as much, when he was diagnosed with Paranoid Schizophrenia 3 years ago, him and his family cut of all contact with my son, his Fathers words were ‘when he is better call me’

My son has said to me ‘He doesn’t want to see me because I am like this’ he is a very intelligent boy with a high IQ, he is forever apologising to me, he will say things like ‘I am sorry I am like this’, ‘I am sorry that I am not like everyone else’, ‘I am sorry I can’t do the things that everyone else does’. It hurts me the most when he says things like ‘I want to die’, ‘I wish I was dead’, ‘can you ask them to kill me so you can be happy’
You can call me a horrible parent but I don’t take him out much due to the comments I hear from members of the public which mostly come from adults who I didn’t think could be so horrible ‘Is he talking to himself?’, ‘he should be in hospital’, ‘he is not well’. It is very unfair on my daughter that we don’t go out much and she does tend to ask questions about her brother and I just don’t know how to answer them.

There are days when things do get really hard for me, and I say to myself that I wish I aborted him but I quickly shake that thought out of my head, that thought should never ever come into my head. I love him he is very special and I do have faith that he will get better.

I am hitting rock bottom at the moment, but I am doing everything to stop myself.

My mum supports the both of us, my friends do support me over the phone, they never ever want to meet up, and one has even said to me ‘I don’t think you should bring him here, I’m scared and I don’t want him scaring the kids’

Is there anyone here that can give me some help and advice?

WetAugust Wed 21-Aug-13 22:05:57

Hope and Faith

I'm adding my voice to those urging you to seek re-assessment of your DS.

My DS has Aspergers Syndrome however he was initially misdiagnosed by an incompetent CAMHS Consultant as having Paranoid Schizophrenia.

PS is such an unusual diagnosis in a young person ( especially one aged 9) that all the professionals involved with my son queried DS's diagnosis. PS is something that can develop in puberty but 9 seems very young to me.

I was told it was a diagnosis that should only be given after absolutely everything else has been ruled out. I was told it was a diagnosis that should only be given after extensive tests and observations. I was told by the Professor of Developmental Delay Disorders that we saw privately that PS is "total madness" and the mere fact that my (un-medicated) son was able to sit in a chair and hold a lengthy conversation with the Prof demonstrated immediately that he didn't have it.

I queried the PS diagnosis because it seemed to me (and everyone else involved with him other than CAMHS) that my DS had autism rather than PS. Sure enough, I discovered that many children with autism and Aspergers were routinely misdiagnosed with PS many years ago. You can read about a more recent misdiagnosis of PS if you google Piers Bolduc - who has Aspergers but was misdiagnosed with PS.

If you are content that a lot of consideration by more than one person has gone into this DX of PS then I'm sorry for raising any doubt. But if you feel in any way unsure about the PS diagnosis I urge you to seek a 2nd opinion.

This is where I would ask to be sent for a 2nd opinion. She has lots of experience with autism and knows of cases that have been misdiagnosed as PS.

www.autism.org.uk/our-services/diagnosing-complex-needs/about-the-nas-lorna-wing-centre-for-autism/the-centre-staff/dr-judith-gould-bsc-mphil-phd-afbpss-cpsychol.aspx

MrsDeVere Wed 21-Aug-13 22:20:36

I agree 100% with you wet

insanityscratching Wed 21-Aug-13 22:31:34

Wet you have said exactly what I was thinking.Some of the symptoms listed for PS by Hope and Faith could easily be explained by autism and a young boy or indeed anyone being dosed with anti psychotics in error would most likely experience psychosis as a side effect. It's very concerning to me that this young boy has been given such a dx from not even a specialist service.sad

WetAugust Wed 21-Aug-13 22:38:01

Message withdrawn at poster's request.

WetAugust Wed 21-Aug-13 22:46:24

Message withdrawn at poster's request.

HopeAndFaith86 Wed 21-Aug-13 22:56:23

WetAugust

Thanks for showing concern. You don't have to apologise for raising any doubt.

I did think he was at bit young to have paranoid schizophrenia and at first I was in denial and it did take me a while to come to terms with it. I am not the strongest person and I do find it hard 'sticking up for myself' and 'asking questions' and doubting people.

I watched the Jani Schofield documentary on YouTube a while ago and my son is on 'her level'

Whenever my son has been in hospital there have never been any children at his age that have paranoid schizophrenia they have always been older and not as worst as my son.

A family member on my dads side has paranoid schizophrenia also but wasn't diagnosed with it until their mid teens.

I will ask for a second opinion, as you seem to know far more than I do.

Thanks once again

WetAugust Wed 21-Aug-13 22:58:24

H&F

I am so concerned that you may be reliving what I went through that I looked for other posts from you for more information.

I found this that you wrote in Behaviour and Development thread

We have an appointment with his psychiatrist in 3 weeks time, he is a Locum whose only interest is to prescribe my son with medication, would he be able to refer me to a psychologist or would I have to ask my doctor? I know these things take months

So my fears are confirmed. You are dealing with a locum - not a permanent member of the specialist staff.

My advice- Get on that phone first thing tomorrow and demand to speak to the Head of Psychiatry and tell him/her that your DS's treatment is not acceptable and that you intend to make a formal complaint via the Patient Advice and Liaison Service - and then make that complaint too.

You will probably find that the Head of Psychiatry is quite appalled at what's been going on.

You want action but you will have to make things happen.

HopeAndFaith86 Wed 21-Aug-13 23:07:58

WetAugust

My son was on Risperidal a while ago. I am so glad I have finally met someone (you) that has been through similar to me. My sons last Psychiatrist was a locum. And the one he has now hasn't really got much to say I feel as if they just want to prescribe my son drugs or put him in hospital. I will call CAMHS first thing tomorrow, If they give me a sooner appointment I will bring my mother along with me although she gets very upset she will ask questions. I have told her that I have joined this site, and also going to store in my mind what has been said by you.

Thanks once again for your help, advice and concern I am no longer feeling alone

HopeAndFaith86 Wed 21-Aug-13 23:10:03

Sorry for keep on repeating myself my mind is so clogged up at the moment

WetAugust Wed 21-Aug-13 23:11:43

Message withdrawn at poster's request.

WetAugust Wed 21-Aug-13 23:22:28

Yes, definitely take your Mum. Show your Mum this thread so she understands everyone's concerns.

Be polite but firm with CAMHS.

All you want from CAMHS is a referral to Dr Gould.

If they won't do that then complain to PALS.

I think that the Head of Psychiatry is the person to demand to speak with.

If you get nowhere with CAMHS then go back to your GP and ask for a tertiary referral to Dr Gould. A dx of PS is certainly grounds for a tertiary referral (that means to the very special specialists).

If you get nowhere by that route then speak to YoungMinds and to National Autistic Society helpline.

Sometimes you have to keep going back and re-challenging until you get someone to listen to you.

Sometimes putting your concerns into a letter and copying to someone else i.e. a letter to the Head of CALMS, copied to the Educational Psychologist can bear fruit. When you copy the letter to someone else the person you wrote to cannot deny that you wrote to him. It also makes your concerns look very considered and a written communication demands a response that a phone call or an email does not. I'd be happy to help you do that.

And come and join us on the SEN Children thread where most of the parents of kids with autism hang out. They have a lot of experience in strategies and techniques for handling behaviour caused by autism (which is what, in my opinion, is the underlying cause of your DS's problems).

HopeAndFaith86 Wed 21-Aug-13 23:38:20

I can't thank you enough for your time and help tonight

I am to see if I can get some sleep now, although I am tired it is hard for me to fall asleep.

I pray every night that things will get better, tonight I will include you in my prayers.

God bless you all xx

Toomuch2young Wed 21-Aug-13 23:40:19

Oh gosh couldn't read and run, am genuinely in tears at this thread and the ways you and your son and family are suffering. I hope upon hope that these wise and knowledgable posters above can help improve things in some way.

You are an amazing and strong lady your son is lucky to have you.

twofalls Thu 22-Aug-13 04:22:33

So glad you are getting support. Wer, you have given some fantastic advice and support. I hope this helps you get some proper help for your poor ds.

DfanjoUnchained Thu 22-Aug-13 09:52:46

I'm so glad you're getting support from some amazing knowledgable posters on here Hope

It really saddens me that people who need the most support have to push and fight for it when getting out of bed is probably hard enough for you.

Everyone here is behind you xx

heronsister Thu 22-Aug-13 10:19:51

Just to let you know I read this, and I am here to witness your journey. Sometimes life begins at rock bottom, though it's a very uncomfortable place to be. I wish I had practical support to offer. The best I can do is to recommend taking one day, one moment, one hour, one minute at a time, and breathe. This too shall pass.... Something will change, some way or other. Big hugs to you, your children and your mother. You are doing amazingly! Keep it up!

HopeAndFaith86 Thu 22-Aug-13 12:47:48

Thanks Dfanjo and Heronsister

I called CAMHS this morning asking for a sooner appointment they told me that the one booked for me is the soonest appointment they have, I asked them what do i do if my son is deteriorates, they said to take him to A&E

I also called his social worker who said that she'd get back to me yesterday but didnt, I left her a message as her phone keeps going to voicemail

In terms of my son he woke up just after 10am very drowsy he had a little bit or breakfast but won't have any lunch, he is currently sitting on the floor in my passage.

DfanjoUnchained Thu 22-Aug-13 15:38:35

Call the social workers office and ask for someone else as you can't get through to your SW and its important

DfanjoUnchained Thu 22-Aug-13 15:38:46

Well done for making the calls

clangermum Thu 22-Aug-13 15:56:43

Also make a note of all the calls you make from now on. Then if you need to put things in writing you'll be clear on your facts.

As others have been saying, if you go somewhere where there is a team of genuine experts, they would hopefully test across the board, not just take any existing diagnosis at face value. Someone may have got things wrong in the past, things change, what's confused for something else at a young age can be more clearly identified later on etc. Regardless of what anyone has said/diagnosed in the past, what's important is where he's at now, and where you both go from here.

Also see if there's a local carer's trust or equivalent support group. As on here, you often learn the most helpful things from other parents and it will help to feel you're not so alone.

clangermum Thu 22-Aug-13 16:02:45

MENCAP, somewhere I wouldn't have automatically thought of, were also brilliant for us. If you google your local group they may have a family link worker you could talk to and they may just come up with some new ideas. It's hard to get any perspective when you're in the thick of it. They may have useful contacts for things like respite. Or put you in touch with other local parents who've dealt with the same authorities you're dealing with.

WetAugust Thu 22-Aug-13 16:30:13

Hi H&F

Glad you rang CAMHS to bring the appointment forward.

Does your son have a Statement of Educational Needs or not?

HopeAndFaith86 Thu 22-Aug-13 16:38:45

Hey WetAugust

Yes he does

WetAugust Thu 22-Aug-13 17:20:11

When did he receive it - because you're going to have to ask for a re-assessment.

HopeAndFaith86 Thu 22-Aug-13 17:35:53

A month into starting his new school

But it has never been reviewed, and his school have not stuck to what was written down.

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