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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?

hellymelly Wed 28-Aug-13 22:23:20

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?

hellymelly Wed 28-Aug-13 22:28:00

Oh and my comments were directed at the poster above me, as I was concerned that from her post she might have thought this wasn't a true story. I did think it was true, as I said. I do believe you and I want you to get some help and support.

DfanjoUnchained Wed 28-Aug-13 22:41:06

If anyone is doubting if this thread is real or not, please report to mnhq, do NOT post your doubts on here. It is not helping and could actually push someone over the edge angry

Hope I'm so sorry things are so bad at the moment. Ignore those ignorant posters doubting you. I think people are more amazed that the system lets down children so badly, but as you can see others have been through the same (like Wet with her ds).

I'm sorry your son isn't doing any better. Do you think it could be a case of misdiagnosis? If not, I think you should still follow Wets advice as she has been through very similar.

It seems you need an advocate, someone strong to really help you. Could your fiancée step up more and be by your side? Does he know you've been suicidal?

I really think you should see your gp for help to get through this tough time. They can help.

Ill pop back on in a bit x

WetAugust Wed 28-Aug-13 22:49:00

Hi H&F

We're not doubting you - we are just doubting that the correct diagnosis has been made.

The person who said it was scandalous meant that it was a scandalous situation that you are being forced to endure. Not anything that you have done - but what is being done to you.

You wrote: "I came on here for help and in search to find mothers that are experiencing the same with their child or similar"

Well you succeeded in your goal because I have indeed been through exactly what you have been through. The emotions I feel about it are still very raw a decade later (hence on the spelling mistakes above as I thumped the keyboard typing it grin)

Nobody has suggested you are not a good parent - quite the reverse. You have everyone's support but for some reason you are focusing on the negative.

You've read my detailed account of how I got us out of a similar mess.

You've got all the contact details you need to strat making a fuss.

You've got the opinions of many here who work in mnetal health services and are telling you first hand that they think your son should be re-assessed.

Unfortunately it also needs you to drive the reassessment by checking that a 2nd opinion is actually being sought, reminding them to do so, insisting that you are involved and checking that whoever they refer your DS to is actually a real specialist.

If he isn't sleeping they should be giving him Melatonin and not Zopliclone.

I was going to write that that is yet another example of poor care but if I did that you'll start to think I disbelieve you again. I do believe you. But we also need to be able to state where we think they are going wrong in order to point out to you how badly we think he is being treated - with you thinking it's a personal attack on you. Which it is not.

So I need to say that when I was going through all this, yes, I was in absolute despair, as you can imagine. I would be working all day and spending the evenings frantically researching and writing letters. I often didn't get to bed until 1-2am. I was totally knackered and I cried a lot. I lost a couple of stone in weight as eating made me feel sick and at one stage I had to hold onto objects to stand up as I felt very dizzy at times through lack of food.

But not once did I feel suicidal Not once. I was angry. Very, very angry indeed and I knew that I had to stay strong for DS as no other bugger seemed to care. Suicide would have been leaving him with a misdiagnosis that could have stayed with him for the rest of his life.

So get any silly ideas of suicide out of your mind right now.

I hope you will copy down the contact details and recommendations for 2nd opinions that I and the other posters gave you.

I feel that I shared far too much information than I feel comfortable with in my hope that you could see just how driven someone has to be able to overcome the 'system'.

I shall probably ask MN to delete those posts in a few day's time.

FannyFifer Wed 28-Aug-13 23:50:44

Darling Hope, no one is doubting you, the comments of disbelief are not toward you, it is disbelief that your son and you are being failed so badly by so many health professionals.

Can you get someone to read through the thread with you, maybe your mum?

I am really sorry you are feeling suicidal, I wish I lived near you and could help.

Just to add I have worked with many people with various mental health problems. PS is not an easy to make diagnosis even in adults.
Severe OCD can result in thoughts/voices, a gentleman I nursed had a lot of thoughts about pushing children, would repeat over to himself, "going to push the boys, going to push the boys" and become very distressed, would not go out in case he acted on the thoughts.

There has been so much fantastic advice and people sharing their stories. We are worried about you and your son & honestly no one doubts you.

DfanjoUnchained Thu 29-Aug-13 07:34:16

Wet please don't delete your posts, they are so useful and with the lack of help for this area, they could really help people in the future searching for similar things. They could help people with misdiagnosis on their children.

How are you this morning, Hope?

hellymelly Thu 29-Aug-13 10:41:55

Hope, I am thinking of you this morning and have checked in to see if you have posted. Agree wet, please don't delete your posts, they are so clear and informative. Really don't want anyone to be in this nightmare position, and your posts could help others too.

kizzie Thu 29-Aug-13 15:56:19

Ive been on MN for over 10 years and this is one of the saddest threads Ive ever read. You sound absolutely amazing Hope and both you and DS deserve the right help.
Theres some brilliant advice and info here from wet and others - i hope it helps open some doors. Will be thinking of you.

hellymelly Thu 29-Aug-13 16:29:19

kizzie I agree, I have only once been as worried about a poster and wished so much that I could properly help. Hope there really is support for you here ,we do all care and are sympathetic towards you.

chipsandmushypeas Fri 30-Aug-13 11:36:55

Op, are you ok?

hellymelly Fri 30-Aug-13 14:01:04

op hope you are ok.

hellymelly Mon 02-Sep-13 14:16:08

I wish that hope would return to the thread. I am really worried and feel dreadful that I unintentionally upset her. Hope if you read this I wonder how your little boy is now and how you are?

RowanMumsnet (MNHQ) Wed 04-Sep-13 11:36:46

Hello

Just to let you know, we've edited one of the OP's posts to remove her son's real name.

Priceliss Mon 09-Sep-13 16:35:05

Just wanted to say you are an amazing mother I cannot imagine how hard this must be and you were so young to have him and what a twat father!

Please make sure you get some kind of care a few days even once a week so you can have a break and do things for you it's so important. And don't isolate good people will understand and know his words are just words that is it.

I'm sending so much love and positive thoughts to you. Women I tell you....amazing creatures! xxx

HopeAndFaith86 Tue 10-Sep-13 21:32:21

Good evening

My son has been re assessed by a psycharist named dr falkowski he has given my son the same diagnosis of paranoid schizophrenia. My son is still in hospital as he still isn't well enough to come home.

hellymelly Tue 10-Sep-13 23:33:44

Hope thank you for updating . How are you coping? I am so sorry your son has been given the same diagnosis again. I am not knowledgable enough to comment further on that. I just hope he isn't too distressed by being in hospital and that you and your little girl are ok.

HopeAndFaith86 Wed 11-Sep-13 12:06:07

Not too well I have split with my partner and he has taken my daughter.

hellymelly Wed 11-Sep-13 13:55:23

Oh no! I am so sorry. Why has he taken your little girl? Is he bringing her back? I hope your little boy is getting help and treatment in hospital.

HopeAndFaith86 Wed 11-Sep-13 15:58:10

He said I have been neglecting her by leaving her at my mums house, my mum doesn't like seeing my son in hospital so she agreed to have my daughter. I don't know when he will be bringing her back he has threatened me with social services

There is no change in my son

hellymelly Wed 11-Sep-13 16:37:21

That is terrible. How can being with her Grandmother be neglect, he is being very unkind. He should be supporting you as the mother of his child.
Is there a plan in place to help your son?

NationMcKinley Wed 11-Sep-13 16:42:14

Hope I am sorry but I have no useful advice. I just want to say I think you're absolutely amazing. I can't imagine what you're going through and I hope to God that this dreadful situation gets sorted out. You said in one of you're earlier posts that you are not a 'strong' person. I disagree. Many many people would have thrown in the towel years ago. You have my respect. Best of luck, flowers (and flowers for your Mum too)

HopeAndFaith86 Wed 11-Sep-13 17:43:17

HellyMelly

My daughter loves spending time with my mum, and yes he is being very unkind and saying hurtful things, he came out with 'well can't they put him in a home' I'd never let my son live anywhere else, from the start he did admit he was jealous or my son but wouldn't give me a reason.

There is no plan in place they have suggested therapy

hellymelly Wed 11-Sep-13 22:36:54

I think you should post in the special needs section too, or ask in chat which might be the most appropriate section to post in, as then there might be more traffic and so more people with experience. I am worried that your ex has just taken your child, as I am not sure how that will affect things legally. Is he thinking of trying to have her live with him ? In which case you might need some legal advice and I know there will be many women here who have been in similar situations.
I am really shocked that your ex is being so unsupportive at a time when you need as much help and support as possible. So sorry you are having such an awful time.

ohmeohmyforgotlogin Thu 12-Sep-13 15:33:14

So sorry you are having to deal with all this. Perhaps the children's legal centre can help re : your daughter. He can't just take her and threaten you like that. Hope your boy is home soon.

HopeAndFaith86 Mon 16-Sep-13 23:14:47

My fiancé has came to his senses now I guess he was doing it to prove a point.

I spoke to the psycharist at the hospital and he was speaking about discharging my son, as much as I want him home I don't think he is quiet ready yet, although he has been speaking alot the things he is saying are very worrying. What do you all suggest?

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