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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?

MrsDeVere Tue 17-Sep-13 07:37:52

Tell them you don't think he is ready.
If they do discharge him insist on a proper care package. Do they have CPN's for young children?

They shouldn't just let him home, not with that serious dx and not without follow up.

Easy for me to say though.

NothingsLeft Tue 17-Sep-13 11:10:13

I've been follow this thread and think you are doing amazingly. You're DS sounds like a great little guy and I'm so sorry he's having such a difficult time. Schizophrenia is a horrible illness, his lovely nature shines through your posts.

I worked on an acute psychiatric ward for many years. If you don't feel he is well enough, please discuss it with the ward. Speak with the nursing staff if you're not getting anywhere with the consultant. the hospital will also have an advocacy service that can support you if you are struggling to be heard or in need of support.

Have they arranged a CPA meeting? this should happen before discharge. His CPN and anyone else that may be useful, social services etc should attend. You can also bring someone for you.

Otherwise they may have a home treatment team that can come and visit twice a day and support you at home for a while.

Don't let them discharge him if you're not happy he will well enough. You're his mum and main carer and they should take your concerns seriously.

HopeAndFaith86 Tue 17-Sep-13 22:54:45

mrsdevere everytime he has been admitted into hospital he has had a CPN the one he has been allocated with now is really nice and she seems to care alot about him and my son does speak to her, when he has been in hospital and discharged in the past they have never given me a care package or offered me any help the only help I've really had is them allocating him with a social worker.

Nothingsleft they haven't arranged a CPA meeting yet, we did have the home treatment come in the past to give him his medication but they wasn't very helpful and came across as if they didn't want to be in my house.

As much as I want him home he just isn't ready yet his beliefs and thoughts he has at the moment would be too much for me to handle. I love my son I am just keep hope that one day he will recover.

MrsDeVere Wed 18-Sep-13 07:10:34

If you feel he isn't ready, I believe you.
Better he stays in longer and gets well than come home too early.

He is so young. It seems better to spend a year of his life in hospital than the next 10 bouncing backwards and forwards.

Do you think one of the issues is the lack of experience of a child with your son's condition? It must be very rare. Have any of them worked with a child with that diagnosis before?

Would you consider a specialist residential school for him when he has been stabilised?

HopeAndFaith86 Wed 18-Sep-13 20:13:36

I do think that is one of the issues, it doesn't feel as anyone wants to help him.

And I would never consider a specialist residential school for him

GirlWithTheLionHeart Thu 19-Sep-13 20:05:08

How are you today Hope? (Dfanjo here) glad to see you're posting again, been thinking about you and your son.

I agree with MrsDv, if you don't think he is ready, tell them that.

Sending you love

HopeAndFaith86 Mon 07-Oct-13 19:01:25

My son is now at home with me, there's a bit of good change. He is sitting still for longer now and can focus on reading a book and watching the television

piratecat Mon 07-Oct-13 19:05:14

oh god this is so very sad op. x will read rest of replies.

NothingsLeft Mon 07-Oct-13 19:23:25

That's really great hope must be lovely to have him back.

handerson91 Mon 18-Nov-13 18:32:07

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

petsheep Tue 19-Nov-13 10:28:47

you are brave and fantastic, I feel so sorry for you ,what you have to face all the time.

I hope you will be Ok, I wish you all the best.

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