9 year old with paranoid schizophrenia and autism

[HopeAndFaith86]

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?

[MsPickle]

H&F

I just wanted to add my voice to the chorus of support.

As I've already said I don't have direct, specialist help to offer but I think Wet is right. You need to find your inner tiger and create some whoopass!!

12% school attendance somewhere that's not sticking to his statement isn't good enough.

Medicating to keep him, and by extension, you, quiet isn't good enough.

With a diagnosis like the one he's been given you need to see more than a locum-you need a team you can trust and build a relationship with to support you both through the years to come. You've had some excellent ideas of how to start assembling that. It's very easy to feel daunted by the NHS, it's hard to navigate. There are experts on here who can help.

Doctors, whether GPs or consultants are people too and struggle with that which they do not fully comprehend. What they should do is cross refer to people who might know more but many don't. They are often very good at projecting confidence in diagnoses that they don't feel. I've been on the receiving end of a misdiagnosis for me that put my life on hold for a year. Now I question, check and challenge. Without apology. It's my health, my life. And I do it for my dc. Yes, they are the experts. But it's our day-to-day.

Also- I don't think that telling you it's the soonest appointment is good enough. I wonder whether you're at one of those cross roads/breaking points that prove to be life changing. You're tired, scared and feeling embattled. For the last 3 years in sounds like you've been let down by the services who've not pulled together to help.

Take Wet's list of things to do and work through it. Write down when you made the call, and who you spoke to. If the locum can't see you on a sooner appt, ring every morning and say, politely, just calling to check there's been no last minute cancellation we can take.

Learn and practice using phrases like:

"Unfortunately, that's not a good enough answer for my son. I'm not just interested in 'fix' for now, I'm looking at a strategy for life. If you are lot the right person to be advising on this aspect that's fine-where would you recommend I try next?"

Unfortunately is a powerful word. There's no blame in it. It give you and the other person options.

You, your ds and your dd have a future together. Starting fighting even harder now for a better one for you all.

And you're not alone. MN isn't utopia but it is full of expertise and support.

We believe you can find a better way for you all.

[DfanjoUnchained]

^great post, agree with all of it

[WetAugust]

Hi H&F

A school that he can only attend 12% of his time is not a suitable placement. So basically he has a Statement that tells him to attend a school that is not suitable.

In Part 2 of his Statement is PS mentioned?

Does the Educational Psychologist who did a report as part of the statementing process aware that your DS has PS? Did the Ed Pysch mention it in his report that forms part of the Statement?

With a dx of PS I would expect your son to be in a very specialist school - that he could attend 100%.

If you could answer these questions I asked about the Statement it'll help with the suggested way forward.

'Soonest' appointment is not good enough. You're going to have to be very forceful with CAMHS and demand an appointment with them tomorrow and threaten to complain to PALS. If you don't get an appointment tomorrow you won't get one until after the Bank Holiday which is a long time to go without support.

I'm hoping you understand just how badly you and your DS are being let down here. It's like breaking a leg, ringing for an ambulance and being told to walk 20 miles to the hospital. It is not appropriate treatment for someone with a broken leg and what you are experiencing is not proper treatment for a child with such a serious diagnosis.

You need to kick up a stink with CAMHS.

It's going to have to be a 2-pronged attack because until you have the correct diagnosis via the NHS you will not receive the correct support via the LA and SS. So you need to start with CAMHS.

If I was you:

Tomorrow I would ring CAMHS, ask to speak to senior consultant psychiatrist and demand they see your son tomorrow. You should not go back to the locum who diagnosed PS. Tell the senior consultant you feel the dx is unsafe because u=you feel it was given after insufficient observation and consideration and before the true extent of his autism had been revealed by specialist autism services (i,e, Dr Gould).

You therefore want CAMHS to make a tertiary referral to Dr Gould. If they refuse tell them you are legally entitled to a fresh 2nd opinion (which you are) and that intend to make a formal complaint to PALS.

Now it will take balls to do that - I know, I had to do it myself. But you need to do it because things will not improve while he's being metaphorically treated for a broken leg when he actually has a broken arm.

If you don't feel able to do that would you be comfortable setting your concerns down in writing and sending it to them?

[HopeAndFaith86]

Hey WetAugust

I'd like I thank you again for your help and concern, I really appreciate it.

In part two his Paranoid is mentioned as well as his Autism.

And yes he did, the reason my son only had 12% attendance rate is because he was too ill to attend I used to call the school and notify them they'd say still bring him in, why would I possibly bring him in if he has told me that a voice is telling him to hurt 'the boy in the wheelchair' I didn't say this to them.

I just feel terrible, unless, and sick inside. I am asking them for help but it feels like they don't want to help me.

I am going to copy you've said, and print it out so I know exactly what I've got to say.

I have had a tough day with my son today, I've sat and cried with him, whilst he told me not to cry and be upset, I do regret giving him the full tablet has it doesn't seem to have worn off yet, he looks zombified, what do I do tonight should I not give him any?

[HopeAndFaith86]

useless** sorry for the error

[WetAugust]

Use your own judgement H&F as to what to do re the tablet but if it's distressing him then I personally wouldn't give it to him. I withdrew my DS's meds when it zombified him.

I am absolutely astounded that the Statement describes him as having PS and that he's only just been admitted to a special school - one which is not even suitable for him. I'm astounded that the Ed Pysch has gone along with this.

The key to this is going to be a correct dx.

The only way to be absolutely sure that he actually has PS is to rule out everything else - that's what the diagnostic criteria actually state.

So, as he has autism you need to tell CAMHS that you want a 2nd opinion from a tertiary specialist in autism so that the austism specialist can say whether or not the voices etc could be caused by autism and not by PS. Hence I recommended Dr Gould who has experience in making the differential diagnosis between autism and PS.

CAMHS must agree to a 2nd opinion. A second opinion is your legal right. It's also important that the 2nd opinion is not tainted by the original opinion so that's another reason for asking for a specialist away from your own local CAMHS. If you can afford it you could actually pay for private re-diagnosis - but you should not have to.

With a dx of PS he should be in 38/52 week a year residential care as his behaviour would be so challenging it would be impossible for you to manage it on your own. There are many independent schools that offer this level of support. It's just a matter of fighting the LA for the correct support.

Focus on CAMHS and getting a 2nd opinion but call YoungMinds and have a chat with them. They should be able to give you some good advice.

[WetAugust]

H&F

This link tells you about someone who has Aspergers (a form of autism) but was misdiagnosed with PS.

It happened to him and it happened to my DS too. Just posting the link so you can see that mistakes do sometimes get made

www.telegraph.co.uk/news/uknews/1445689/Piers-is-not-a-criminal-and-hes-not-insane-so-why-is-he-in-Broadmoor.html

[HopeAndFaith86]

WetAugust

My son is really ill today, I called CAMHS to tell them this they have told me to bring him to the hospital, I also asked them for a second opinion, they said that it is something I can't get overnight.

I really don't want to take my son to the hospital because they will just want to admit him and pump more drugs into him. I have had enough of CAMHS they don't seem bothered about my child.

My next step is to see someone privately who has a lot of experience, I am searching online now, would it be possible for you to give me the name of the person you went to? If not I will keep searching.

I am taking this into my own hands now, I will not let my son suffer anymore, today he has been continuously shaking

[WetAugust]

H&F

Sorry to hear your son is not well today.

The person I saw has long since retired ( a decade ago).

You will struggle to get a private appointment quickly as the good Paeds get booked up quickly.

I'm told this person is very good with extensive MH experience:

www.daphnekeen.co.uk/ You have to be persistent to get through to her to make an appointment but a least she's local so you could always fill a cancellation at short notice. I'd make it quite clear to her that he's been dx'd by CAMHS locum and you are not happy with his current diagnosis.

But keep pushing CAMHS for 2nd opinion. If it takes time to arrange the sooner they start doing so the better.

Are you still dealing with this locum consultant or have you managed to speak to someone more senior in CAMHS?

If he's still very unwell he will need to go to hospital. But you can see from the article I posted a link to yesterday that if he doesn't have PS the drugs for PS will not be effective. While he is in the hospital you should push to see the Head of Services at CAMHS. There's too much 'they' / 'them' in your posts. You need to be speaking to the right people.

If you post on the Special Needs; Children board on Mumsnet you may get other recommendations for private practitioners.

[HopeAndFaith86]

WetAugust

Thanks for being there for me

I am going to click the link once I have finished typing this. I spoke to the Head at CAMHS today, they just don't seem to care about my son. I don't want my son being admitted to hospital so I think I am going to keep him here, I managed to get him to lay down and now he is asleep but I don't think he will sleep the whole night

I called my mum she will be here tomorrow, this situation is having huge strain my relationship, my fiancé wants to come home and help with my son, but I can't let him whilst my son has bizarre beliefs about him.

I also feel like a terrible mother for not being able to do anything with my daughter

[WetAugust]

I think you need to ask Mumsnet to remove your son's name from your last post.

Ok - if you feel you are being taken seriously by CAMHS then put your concerns in a letter to Head of CAMHS and copy it to your GP and also to someone outside the NHS - say his Educational Psychologist.


Your letter should set out the background i.e. son diagnosed with autism and PS at age 6. Has had several years of hospital admissions and medication. You are concerned about the dx of PS at such a young age and wish to exercise you sons entitlement to a 2nd opinion. You are therefore asking to be referred to a specialist autism service (DISCO / Tavistock, Maudesley) within the next 28 days, for a 2nd opinion.

If you write the letter to Head of CAMHS then you must receive a response from Head of CAMHS. If they try to ring you with their answer tell them you want a written response. If they don't respond within 28 days then go to your MP and ask him to intervene on behalf of his constituent (your son).

You see, at the moment all this is being kept conveniently in the same little place by your local CAMHS and Local Authority. You need to break out of the local area with that 2nd opinion referral. That way your local area can't keep stringing you along.

Two-pronged attack: write a Letter to the Head od education Services in your borough and inform them that you wish them to hold a review of your son's Statement as it names a school that cannot support his needs as evidenced by the fact your son has only been able to access education there for 12% of the available term time. If they refuse to review the Statement and it's 12 (I think because it could be 6 months) since the Statement was last revised then you can appeal to SENDIST.

It would also help you enormously if you asked MN to move this thread from Mental Health as this section is mainly adult MH to Special Needs Children where there are lots of parents who are going through very challenging times and who, in many instances, will be able to suggest ways ahead for you.

[WetAugust]

Well H&F - you're in luck.

In March 2013 NICE - the clinical excellence people published a whole tome of guidance on

Psychosis and schizophrenia: recognition and management of psychosis and schizophrenia in children and young people
Here [http://publications.nice.org.uk/psychosis-and-schizophrenia-in-children-and-young-people-cg155/recommendations]]
These are the guidelines that your CAMHS must follow.

You should read them fully and familiarise yourself with them and ask yourself - was this done for my son. Are CAMHS following the right strategies. Have we been offered everything NICE says we should have been?

I have only skimmed the document but already in section 1.8.8 it syas:

Interventions for children and young people whose illness has not responded adequately to treatment

1.8.8 For children and young people with psychosis or schizophrenia whose illness has not responded adequately to pharmacological or psychological interventions:

1. review the diagnosis
   
   
   Exactly what I suggested many posts ago that they should have done.
   
   So now you can add to your letter to the Head of CAMHS that you wish your son to be referred for a review of the diagnosis by the undertaking of a fresh 2nd opinion as recommended by NICE Guidance on Psychosis and schizophrenia .... March 2013.
   
   And if they fail to do so they will be in contravention of national guidance and your subsequent complaint will be taken seriously.
   
   So there's some action you can take to start getting them to take you seriously.

[HopeAndFaith86]

My son had a very bad night, waiting for my mum to come over then I'm taking him to the hospital

[mollycuddles]

I've read this thread. I am a GP but know very little about your situation. I've known one child in my career with autism and PS. I don't know if they were getting proper care or diagnosis as I saw them only very briefly but it did seem to me to be very different from adult PS
You have had good advice here. A condition this rare needs IMO a national expert. Good luck today and for the future

[HopeAndFaith86]

Morning

My son was admitted into hospital, I have asked for a second opinion in which they said could take up to 2 weeks. I don't want my child spending another 2 weeks hospital, but they have told me it is for the best. They have tried forcing medication on him but I have refused. He won't be taking anymore until we have got the second opinion

[WetAugust]

Glad he's getting help.

I hope that they mean that you will be given an appointment with the person who will be doing the 2nd opinion within the next 2 weeks and not that you will have the results of a 2nd opinion in 2 weeks time.

It should take whoever is doing the 2nd opinion much longer than 2 weeks to arrive at.

And have they told you who will be doing the 2nd opinion - you need to know. It could be Joe Blogs who specialises in measles for you you know. You tell them who you want to do it - we've told you who is competent to do the 2nd opinion. That's where you should tell them you want to ne seen.

You need to be free from the local CAMHs and see true experts.

[queenofthepirates]

Just wanted to send your whole family a huge hug, I am full of admiration for your amazing patience and hope there are wise people on here who can support you xxx

[hellymelly]

Good grief. I am so appalled by this thread. You poor poor woman. I would have posted something similar but far less informed than WetAugust. Your son sounds so lovely and you both sound absolutely at breaking point. I feel sad and tearful reading how utterly the system has failed your son and family so far. I hope you are able to get the help now that you need. Virtual to you, and really hoping that things change for you now, I am really worried about you.

[HopeAndFaith86]

WetAugust

They have told me that I should be seeing them within two weeks, I don't know who I will be seeing, I have problems speaking out to people I am just disgusted in myself that I have let things get this far.

My mum is at the hospital with my son whilst I am home spending time with my daughter, I am going to take her to the cinema too, I just feel guilty that I have let things get like this.

I hate him being in hospital, if you saw the way the nurses and doctors treat some of the patients there you would understand.

I took him to A&E because I was at breaking point, it was an option of he went into the hospital voluntary or they would have put him under section.

Hellymelly

Thanks for your concern. I feel as if I am on the verge of having a breakdown the only person I am getting support from is my mum, his dad should be there for him. I just want my son home with me but he is too ill to come back

[WetAugust]

There's no need at all to feel disgusted with yourself. That's simply ridiculous. Mental health care a very strange world that we flounder around in and challenging experts is not something we do easily....

BUT

'they' telling you that you should be seeing 'them' in a few weeks is simply not good enough.

Who are 'they'. Who are 'them'. You need to get a grip on this and start driving it - no matter how shy you feel at challenging them.

Can I tell you my opinion? In my opinion there is not a cat in hell's chance that your DS has had paranoid schizophrenia since age 6 - for the last 3 years. In someone so young it could take 3 years just to arrive at that diagnosis but it's more likely that such a diagnosis would never have been made - because it's just too unsafe and damaging. That's what I was told when my son was misdiagnosed.

Dis you know that early onset schiz starts at age 16.

Very early onset starts at 14.

He was diagnosed at 6!!!!!! Seriously 6!!!!!

Yes you're stressed - I know just how stressed you are because I've been there myself.

But your son has you to fight for him. No one else. - YOU

So you can hope that things will get better and that 'they' do end up talking to 'them' and that 'that' decide that 'they' have made the right diagnosis.....

or...

you can sit down, read this thread from end to end, with a pencil and pen in your hand to take notes of actions you need to take .....

or

you can take your daughter to the cinema.

Personally - and I know, because I've been there, I would be very, very angry and start driving this situation.

You want an end to this nonsense - well that won't happen until he been re-assessed and receiving correct support. Until than, as you've already noted, hospital is jus a holding pen until CAMHS can discharge him at age 16.

I don't want to wrote any more. I've given you all the advice I can. It's a pity that you can't use it to good effect and start asking 'them' difficult questions like how the hell has a 6 year old been diagnosed by a locum with one of the most serious mental health conditions that exist?

[HopeAndFaith86]

Hi

WetAugust

I have printed this all out now. But I have a feeling in the back of my mind that you don't believe what I am saying, I simply signed up to this site for help and advice. Not to be doubted, you have absolutely no idea how I feel and how embarrassed I feel for signing up to this site to seek advice.

I did take my daughter to the cinema because I never get any one on one time with her.

I'll say again, yes my son was diagnosed with paranoid schizophrenia I can email you letter they sent me, a week after we last see the psychiatrist. I tend to keep everything to myself due to the fact of people judging me as not a good parent. If you were to see my child you would say he has a mental illness and not autism, I think I forgot to mention that there is people in my family with a mental health issue.

When my son was diagnosed I did research online and found that children as young as 5 have been diagnosed with the illness.

Everyday is a struggle for me, and there are days when I want to give up, there's been times when I have wanted to end me and my childs life, that way he wouldn't be suffering anymore and he wouldn't be able.

I do not like the way you have quoted 'them' please understand that I am a lot younger than you and have confident issues.

But on the other hand I would like to thank you for all your help and advice, but please don't judge or doubt me without knowing me or my child.

[thornrose]

God Hope you've really got it tough

I'm not able to give you any advice. I have a dd with Aspergers and OCD, anxiety etc. but that's nothing compared to your struggle.

I just want to say, something, but it all sounds so pointless. You are one hell of a mother and don't ever doubt that I really hope that you and your ds can find the help you deserve.

[hellymelly]

Hope, from your very first post I was as worried about you and your own mental health as your son's. Not in terms of PS, but because both of you sound overwhelmed, depressed and at breaking point. It is very very hard to come from that and be forceful with MH professionals, I see that. I really wish there was some way I could help. Wet has given very good advice, do you have any friends who are perhaps a bit older than you who would go through it step by step and help you start tackling this? Because it sounds like a scandal to me, the sort of thing one might read about in the press and be shocked by. I am honestly horrified that your little boy had this diagnosis at 6. He sounds very very stressed and to my mind as though he is a highly intelligent child overwhelmed with anxiety and possibly OCD. I desperately hope you and your son get the help and support you need. Apologies if it has been said but where in the country are you?

[HopeAndFaith86]

HellyMelly

I have no one except my mum, his own father don't want to know, my friends do support me over the phone but I doubt they'd come with me.

We are in London (Docklands)

[FannyFifer]

I am a mental health nurse & am pretty shocked to read your posts.

Please please listen to the people who have posted on this thread.

You must get your son assessed again, I believe someone up thread gave you a doctors name?

You are an advocate for your child, that diagnosis is not one that a random locum should be making.

You need to get a second opinion, maybe a third opinion.

I know you are scared, but you need to fight for your son.