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?

[WetAugust]

I'm not judging you H&F. I'm sorry you feel that way.

I have no doubt at all that your child has been dx'd with paranoid schizophrenia. I doubt very much that he actually has paranoid schizophrenia.

That's what I was trying to convey in my last post.

Yes, some very young children do get diagnosed with paranoid schizophrenia but it's more usual not to make that diagnosis as it's so damaging and also very difficult to make a safe diagnosis in someone so young and someone who also has autism.

If I met your son, and knowing that he had also been diagnosed with autism, I probably wouldn't think he had a mental illness.

You've mentioned conversations with your son that you've had and things that he's said that someone with paranoid schizophrenia would be very unlikely to have sufficient personal insight (especially at his age) to hold. Paranoid schizophrenia is basically insanity. He sounds very intelligent. Hearing voices is not confined to mental illness, many people with autism hear voices without being mentally ill. Appearing to be delusional can be a feature of autism. My own son insisted he was a dog for several years and he would only answer to a dog's name. That sounds crazy but that sort of behaviour is not terribly rare in someone with autism. Many people with autism have very challenging behaviour without being mentally ill. I have met people with autism who have felt the need to scream for hours at a time. They can also have very high degrees of anxiety and feelings of self-loathing - with doesn't mean they are mentally ill, it's just another symptom of the autism.

I'm not doubting you - I am doubting the correctness of the diagnosis.

Years ago people with autism were frequently misdiagnosed with paranoid schizophrenia - that's why it's important that the diagnosis is correct.

You know who the experts in autism are in your area - that's the people you need to tell CAMHS to send him to for a dx. You cannot just leave it to CAMHS to decide - it's too important.

After my son's misdiagnosis I looked up the qualifications and experience of every doctor who he was referred to and I refused to allow him to be seen by at least 2 doctors who I felt did not have the qualifications and experience to deal with my son's complex problems. You could call that ridiculous overkill - I call it being ultra-cautious. He had had one misdiagnosis and there was no way I was going to allow anyone near him who was not an expert, just in case he was misdiagnosed again. That's what I mean about not leaving it up to CAMHS to send him to whomever they want - it's a discussion that CAMHS should be having with you - agreeing an expert between you that you and CAMHS have confidence in.

I hope you will feel confident to be able to insist that you are fully included in all the decision-making over your son's future. He should definitely have a Care Plan and you should be fully involved in drawing up that Care Plan and in ensuring it is reviewed.

Your son should be assessed for respite care and you should also be assessed as his carer. It may be that he may be awarded Direct Payments so you can obtain respite care. His long-term education needs to be looked at, which will almost certainly involve the 38/52 week a year almost certainly residential care that I mentioned.

All huge, huge things to tackle. But you will get there - I am sure you will.

Best wishes

[Ruu]

Hi

It sounds like your DS has OCD (not schizo) - impulsive thoughts and contamination issues.

I really think you should explore getting him assessed for it.

My DH has suffered all his life and sometimes does the mumbling thing too - he's thinking out loud and trying to get control.

It first started during puberty for him and it will always be there but he now manages to live with it :-)

[hellymelly]

Oh sorry, you had said that you were in docklands. If I was still in Central London I would come with you, but I am really far away now. I am going to think over this tonight and post again tomorrow if I can think of anything helpful. Just so sorry you are going through this, and I see another poster thinks maybe OCD too. Really hope you can sleep tonight. This is a terrible situation, and I know I would find it really hard now, at 49. I would not have coped anywhere near as well as you at your age.

[hellymelly]

Oh and my best friend has a son with severe autism, fighting for his education, for respite, all the care he needs has been extremely hard. She is articulate, well educated, in her 40s now and still having to fight for him. She is naturally rather shy and not stroppy or bossy but has had to act very assertively to protect her son. I do understand how hard this is. And WetAugust clearly has been through all this and understands even better than I could.

[hellymelly]

OP how are you today? Could you show this whole thread to your Mum, as maybe she could then go through an action plan with you and help you to get your son re-assessed asap? If there are any grounds to doubt his original diagnosis, and it sounds as though clearly there are, then the team looking after him should want to sort it out. Are you happy with the hospital he is in? Is it a good one?

[hellymelly]

Hope, thinking of you and hoping you are ok.

[Stepinstone]

I work with PS and agree entirely with Wet August.

This case is a collossal cock up from a clinical point of view.

If you lack confidence abOut this, then seek help for yourself - counselling etc.

Your son should not have this diagnosis and it will not be getting him the right treatment.

[hellymelly]

Stepinstone- it is scandalous isn't it? I have been really upset by this thread, I had no idea a six year old child could be given such a diagnosis with the heavy duty medication etc. Its terrible to read.

[Stepinstone]

Helly: Yes, terrible. Should really be investigated but I can see how hideous this must be for the OP and it must be so hard to get advice/support. People are still terrified of PS and give it a wide berth. :(

[Stepinstone]

(which I think is perhaps why this has gone unquestioned)

[hellymelly]

I think that once a diagnosis is down on record then subsequent people dealing with the case tend to accept it as a given. Even though the original diagnosis was given by a locum.

[hellymelly]

quietly-that doesn't seem to be happening at all. Are you thinking this isn't real? Because I have been very worried about the OP and her son, and it would be a relief if this is a fake post. It didn't seem so to me though.

[Stepinstone]

Quietly: I agree. But we can only take this at face value. I agree it seems extraordinary.

[lazymum99]

I have no experience with PS nd have been horrified by this thread. However, I do have a 22 year old son who was diagnosed with OCD at 18. Some of the obsessions were about hurting babies in prams and he would be overcome with anxiety when walking past babies in the street and would avoid at all cost. OPs son seems as aware of these thoughts as my son and won't go to school in case he hurts one of the children. I thought if it was PS he would not be able to think as rationally as this. But as I said this is only based on experience of OCD symptoms. My son has also gone through stages of talking to himself in order to try and control the intrusive thoughts which can look very odd indeed.
He was prescribed 25mg quetiapine at 20 when the anxiety was very bad. He took it in the morning by mistake and was zombified for the rest of the day and he was a 10 stone adult. When he then took it at night it resulted in him not being ble to get up and feeling groggy until boy midday. I cannot believe a 9 year old would be prescribed 25mg twice a day.
I find the whole thread extremely upsetting and feel awful for the child and is mother. It is like something ou of a film which you would think couldn't happen. Couldn't her GP intervene in the circumstances?

[SauceForTheGander]

for you and your boy Hope

I hope you get the support and advice to ease your day to day responsibilities.

[WetAugust]

But it looks as though the OP is suffering the same collective professional denial.

Look at those in her case who have so far failed to act:

Her son's GP who will have been informed of the PS dx and of the medication prescribed

Her locum CAMHS psychiatrist who made the dx

The CAMHS Head of Psychiatry that she spoke to a few days ago

Every mental health worker in the hospital to which her son has been admitted regularly over the years and in which he is currently a patient

His Ed Pysch, who will have assessed him for his Statement of Educational Needs and has accepted the PS dx

His Community Paed who will also have contributed to the statutory assessment for the Statement

His social worker

His Local Authority who have not come up with a placement commensurate with his needs

All the above seem to have accepted that it's OK for a 6 year old to have been diagnosed with PS and that, for the last 3 years, has been managed in mainstream and local special school - which he can only attend 12% of the time.

Uncannily similar to my experience

[HopeAndFaith86]

Good Evening

After reading some of the comments that has been left on this thread since I have last been here, a part of me has told myself not to post on here again, I just can't explain the way it makes me feel inside.


I have offered to email the last letter sent from my sons psychiatrist, I feel as if people on this thread think that I am making 'this' all up especially the person who said ' it is scandalous isn't it?' and the other person that said ' Are you thinking this isn't real? Because I have been very worried about the OP and her son, and it would be a relief if this is a fake post. It didn't seem so to me though.'

I came on here for help and in search to find mothers that are experiencing the same with their child or similar, not to be doubted or judged by anyone one. I feel as if the majority of people here think that I am not a good parent and I am not doing the best for my son. You have no idea what I am going through this morning I thought about committing suicide, I was that close, I was very close.

I wrote a letter to my mum, fiancé, my daughter and my son explaining how much I loved them

I live in an apartment block which goes up to the tenth floor, I took climbed the stairs up the ninth floor I opened one of the windows it was big enough for me to climb out of.

My son needs me, if I did do it he would have blamed himself
I am disgusted and ashamed that the thought of suicide did cross my mind and I was that close to acting upon it, that close, if I had of done it, all my worries and troubles would have disappeared. It would have been such a selfish act I haven't even told my mum about what happened when I got home this morning.

I went to collect my daughter from her house like nothing had happened.

My son is still in hospital he is not getting any better, all I have been told to do is 'wait' that's all I hear that's all I am hearing 'wait' it is like they don't care about my child is it because he is not 'kicking off' and acting aggressive like the other patients in the hospital? I see with my own eyes how they treating the other patients I dread to think what would happen if my mum or myself wasn't there with my son. I have stood my ground and not let them force any medication on him, yesterday night I did allow them to give him some 'Zopiclone' as he hasn't been sleeping.

[musicsavedmylife]

Sorry pease excuse grammar.
Sweetheart, please don't give up, you are loved by your son and daughter,am kind of in the same situation a you my princess was 10 when she told me that she could here voices and that she thought it was the devil,she s 12 now and has autism,an anxiety disorder and ocd.i did not know what to do,I kept it to myself.i went to a group about managing challenging behaviour and 2 other carers mentioned the same thing as what my daughter s doing,all our children had Autism.you are not alone.sending you a big hug.

[Stepinstone]

Hope: I understand that you are under an extreme amount of stress.

The comments people have made are nothing to do with your or your parenting. No one is doubting you as a mother or the love and care you give your son.

They are however doubting that, if it is the case as you have written, a mental health trust has passed on a diagnosis that many here feel has been made lightly or perhaps misunderstood in some way. That may result in your son being treated incorrectly in a way that is not optimal for his own physical and mental health and development. The diagnosis that your son has been given (of PS) at the age of six would be pretty much unprecedented.

If this is the case and you are not having specialist multi-agency teams working on your case, then there is much concern here for you. We are supporting you by suggesting that you become the expert in this on behalf of your son, and ask for second and third opinions until every other possibility has been exhausted.

Take care and find yourself some support - ideally a specialist mental health carers service, or an advocacy organisation or similar. Good luck.

[hellymelly]

Hope it was me who wrote "It is scandalous isn't it?". I don't understand why that has upset you, (perhaps you misunderstood me?) I meant it was a scandal that you have been let down so badly by the system. I certainly had no intention of doubting you or upsetting you in any way .I have made it clear through my posts, (or so I thought) that I thought you were being truthful and I have been worrying very much about you, checking the thread each morning to see if you had posted. I have lain awake at night worrying about you and trying to think of a way to help. I would feel terrible if you were leaving the thread because I have inadvertantly upset you. And I am very sorry if my phrasing or anything I have written has upset you at all. I think that posters really do want to reach out and help as much as they can. You are obviously completely at breaking point, and under intense stress. I don't know how to help, what do you think you need that would help you cope? I think you really need far more support than you are getting- could you tell your GP how much pressure you are under and that you need some more support?