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AMA

AMA: My 24 yr old son developed treatment resistant schizophrenia.

27 replies

TheCatterall · 07/04/2024 16:55

Hey, doing this as I know there must be other parents and guardians in similar situations and I know how lonely and scary it can be. Not to mention devastating for all concerned.

My son has developed normally and was healthy, with an active and large group of friends before his psychotic break at 24 - 6 years ago. He worked in a specialist area of IT and was head hunted by some very big companies. He was my rock and was my first born. His younger brother (6 year age difference) massively looked up to him and they often went away together.

His break down came out of nowhere for us, no real warning signs in his calls and messages to us in the months leading up to it.

since his psychotic break we’ve had to fight for treatment.
He doesn’t think he’s ill.
He’s classed as an acute case and high functioning so can mask quite well for some time.
He’s on a depo as won’t take tablets (says he will but it always fails).
none of the medications in 6 years have provided stability for him.
He hears voices but denys it (it’s obvious when you hear him talking to himself and his mannerisms).
He has many physical and mental hallucinations and paronia.
I’ve had to demand and push for a community treatment order for him when he’s not sectioned.
he’s been sectioned for pretty much 3 years now and bounced between 4 acute wards and one acute community home. Back in hospital now.
He regularly goes AWOL from units and is a suicide risk several times a year when his psychosis is too great.

I’ve given up hope of him ever being stable based on feedback from consultants.
I am now fighting for a stable secure community home placement for him.

I don’t know all the correct terms etc. I’m just a single mum doing the best I can whilst also trying to support his younger brother who’s massively impacted by this.

so if you are worried about a friend or relative, wonder what it’s like visiting secure wards, don’t know how to talk to someone in the depths of psychosis etc just ask.

And if you are in similar situation - massive massive squishes.

OP posts:
HelloMiss · 07/04/2024 17:00

How does his psychosis present?

Feel for you. Sounds like he's lucky to have you fighting for him

Bellybootcut · 07/04/2024 17:04

This sounds so awful. I'm sorry you're all going through this. Does he accept the diagnosis?

Raspberrymoon49 · 07/04/2024 17:08

Am so sorry OP, very traumatic for you all 💐

Magyk · 07/04/2024 17:13

Have medical professionals given any possible causes? So I’m wondering if it was inevitable or there was a trigger. My DS is a bit brittle, can be mildly manic. He also is ambitious, wanting to go to a top university and work in London earning a decent salary. I worry about the stress of that life and possibly effects on mental health.

Bearintheredhat · 07/04/2024 18:02

My heart goes out to you.

How strong you must be.

JJJJuniper · 07/04/2024 18:05

You send like an incredible mother. I hope more help becomes available for your son Flowers

JJJJuniper · 07/04/2024 18:06

Sound

TomeTome · 07/04/2024 18:09

Is he happy? Why does he feel he has to lie about hearing voices? How did it all start?

IlesFlottante · 07/04/2024 18:14

A branch of my family has been through this. I don't think it's known that schizophrenia often develops like this - out of nowhere, in happy and successful young men. I'm so sorry for what your son has lost.

At this point, what would a good life look like for your son?
What would you say most needs to change in treating people with mental illness like your son's?

Snowonthepeach · 07/04/2024 19:49

This sounds incredibly tough for all of you.

What were the first symptoms you noticed?

Does he have "negative" symptoms as well as "positive" ones? (I believe those are the terms psychiatrists use)

muggart · 07/04/2024 21:49

How heartbreaking for you OP, I'm so sorry.

I would also be interested in understanding what led to it, although I recognize there'll probably be more than one factor.

Vallmo47 · 07/04/2024 21:54

Sending lots of love OP.
My brother developed the same condition in his later teens. I then suffered a severe psychotic episode in my 30’s that was luckily caught and treated. 7 years on and life is back to normal, but I’m acutely aware of how mental illness can catch us all out at any point without much (if any) warning. Triggers for me was illness and stress. I still don’t handle stressful situations very well but I’m entirely medication free since 4 years back. It is possible to turn your life back around. Sounds like he has the right support behind him - that’s exactly what he needs.

FoodAnxiety · 07/04/2024 21:56

I'm so sorry to hear this. It sounds immensely difficult for him - and you. Thank you for starting this AMA. Take care 💐

TheCatterall · 08/04/2024 18:39

HelloMiss · 07/04/2024 17:00

How does his psychosis present?

Feel for you. Sounds like he's lucky to have you fighting for him

Hey @HelloMiss &@Bellybootcut

sorry for the delay. Didn’t get notifications as I’m a dufus and didn’t switch the option on!

he doesn’t accept the diagnosis. Thinks we are all ‘obsessed with mental health’ and that ‘they’/we are purposely trying to keep him locked up so he can’t go out and do ‘good in the world and cure all the people’.

his psychosis consists generally of the following as standard (only touched on it as there are so many things he does)- so week to week;

DELUSIONS
so fixed false beliefs. too many to list.

Thinks we are all connected neurologically and that others are trying to input beliefs or delete/wipe and reset his brain. Believes he can tell what I’m ’really’ thinking over the phone as he’s connected to my subconscious.

DISORDERED THINKING
Grabbed this as it sums things up nicely. - https://www.verywellhealth.com/different-types-of-psychosis-5095671#:~:text=Psychosis%20can%20include%20hallucinations%2C%20delusions,substance%20use%20and%20sleep%20deprivation.

Disordered thinking that’s severe enough to impair a person’s ability to communicate effectively is another symptom of psychosis. Examples of disordered thinking include fast, racing thoughts, derailment, perseveration (uncontrollable repetitive thoughts), illogicality (belief and thoughts that are not based on logic or reason), and tangentiality (jumping from one topic to another without any apparent connection).

so to us that can be him going off on monologues but he seems to run out of steam and stumble over words and starts making them up. His rambles never really get to a point or reach a conclusion. There is a fancy name for it but menopause likes to delete the pretty words when I most need them. He mainly has Illogicality issues - but also tangentially. The other two present when he’s at rock bottom (perseveration, derailment).

HALLUCINATIONS
these aren’t always obvious as he hides/denys/masks etc

I don’t think he sees people but he does have auditory hallucinations where people either talk in his head to him or ‘send him messages’ in his head. This is mainly Vladimir Putin who thinks he’s a double agent.

he has physical hallucinations where he thinks all the food on the hospital is rotten. He’s thrown away all my fresh fruit previously as it’s was rotten etc (it wasn’t). Eaten raw onion as he thinks it tastes ok - as in eating like an apple.

he can sometimes see and hear the electric in the walls.

everyone in the hospital is out to get him.

he’s been hacked by literally everyone. Lasted is someone on the ward has apparently hacked his banking app so we can’t access it. Not him having faffed with it so that the bank locked it for a security measure..

I alternate from the good guy to the bad one.

I sold him to peadophile rings (PR). Took him to the circus to see a hypnotist to make him pliable to the PR. He makes accusations that others in my family - my brother etc are abusing their children and he can tell as they send him neural messages. To my knowledge my son was never abused. But could I say 💯 that away with cubs or on sleepovers etc something did/didn’t happen - I can’t. But I do doubt anything and his claims/age/story etc change all the time - they often marry up with things happening in mainstream media.

Sometimes thinks he’s Banksy and rings me with other patients who he’s tried to convince that they are my long lost son. So basically Banksy rings me every other month with some poor soul.

At his worse when he’s deep in psychosis he can be walking along and pause mid stride. Even with a foot of the ground. The voices are talking to him. To hard to ignore and mask. It’s like someone hit a pause button. Then within a few seconds he’s back in the room like it didn’t happen.

We can’t always talk in rooms with the panelled ceilings as they absorb your thoughts and energy into the ceiling. They turn it into bad energy and miasma and it hovers at the ward doors so you have to hold your breath as you walk through them.

Just so much. So many things. Some change over the years. Some go away replaced with new beliefs etc.

Getting Stuck: Perseveration Symptoms in Alzheimer's

Learn about perseveration in Alzheimer's disease and other dementia, including how to respond to this challenging, repetitious behavior.

https://www.verywellhealth.com/perseveration-98602

OP posts:
TheCatterall · 08/04/2024 18:45

TomeTome · 07/04/2024 18:09

Is he happy? Why does he feel he has to lie about hearing voices? How did it all start?

@TomeTome he is very unhappy, angry and bitter.

He is held in wards and units against his will.
he is kept from a life and the fleeting ever changing plans he wants to fulfill. He fully believes there is nothing wrong with him.

He lies about the voices probably because they tell him to in his head. Vladimir Putin would be angry if everyone knew my son was a double agent for him. So why would he tell us.

My son is high functioning - ie clever enough to know that admitting to hearing voices whilst under MH care /sectioned means you are held and medicated more.

I’ll do a separate post about how it all started - or what bits we have pieced together over the years between us and his friends. None of us know 💯 as he lived down south for his work with a housemate who he rarely saw due to different work patterns.

OP posts:
Brightredtulips · 08/04/2024 18:58

My brother was succesful and happy. He had a bright future. Out of nowhere he became paranoid, erratic, fearful amongst other things. He was 23. When he was sectioned it destroyed us all. The police handcuffed him and put him in their van. He was not aggressive just very vulnerable and quiet. We as a family have never got over it 26 yrs later. I can cry thinking about him, and my parents. He lives in a private rental and I help him when I can, though I find it difficult to visit him as it upsets me very much. He rants all the time and tries so much to be helpful. Hes tender and sweet but is paranoid. His neighbours are a bit rough and hate him, he's afraid of them , he has locks on all his interior doors and several on his front door. He was such a lovely young man, full of hope for his future. I fear for my children incase its hereditary.

Scottishdreams1991 · 08/04/2024 19:11

I spent some time in a unit ( 3 yrs) when i was a teen. The thing most people are surprised about is the laughter and humour i talk about and the ability to see the lighter side of a terrible time/illness.
Its something that i believe helped me alot during that time.

Can you relate? My mum always saw the lighter side.
Apologies if that was offensive everything has different coping strategies

Prawncow · 08/04/2024 19:16

Did you have any family history of schizophrenia?

It’s a horrible illness and your DS’s diagnosis must have been such a shock for you and your family. Having someone like you to advocate for him - especially when he doesn’t believe he needs help - makes a huge difference.

Cattyisbatty · 10/04/2024 17:32

I am so sorry to read about your son.
My son is 20 and has some mild psychosis episodes, he’s under the early help psychosis team who have been very good and I hope it’s been caught early. It’s much worse for him when he’s in stressful situations and his anxiety is high. He had major trauma last year which ramped things up and that’s when he was referred (he’s at uni and it all got sorted there although the traumatic event happened pre-uni).
I do worry that one day things will escalate and he’ll end up in a hospital. He’s never taken any medication (his care coordinator is now pushing for this) and is not a big fan of therapy, but he is in the list for specialised therapy (no point me trying to get him seen privately as he never responds well - he’s also very clever and high functioning and thinks he knows best 🤦‍♀️).

HillyHoney · 10/04/2024 17:41

I'm so sorry OP, and to everyone else on this thread in a similar position. My cousin suffered from (drug-induced) schizophrenia and it was horrific, both for him and his immediate family. I wish people could be made to understand the damage that cannabis can do to some developing young brains, although I appreciate that likely wasn't the trigger here.

Blackcats7 · 10/04/2024 18:02

Really sorry you and your son and the rest of the family are going through this.
I have known two people with this illness and both were completely different but similar themes.
My friend’s mum was paranoid that she was being watched (never certain by whom) and would take the most innocuous things as “signs” she was being targeted. It took over her life and my friend was about 10 at the time so took what her mum was telling her at face value which was awful for her as a child. Mum was sectioned for a while. Eventually her condition was managed by medication and by the time I met her years later you would never have known she had the illness at all apart from being a bit anxious.
The other person was someone I worked with whose illness was difficult to manage because he was not cooperating with health professionals at all. He lost his job, would disappear off hiding in remote locations at regular intervals because he thought the IRA were after him, then being brought back by the police when he was seen behaving erratically. He ended up hurting someone badly and as far as I know is still in a secure hospital very much against his will.
I very much hope your son gets proper support from mental health services as this can make all the difference.

BusStopNumber3 · 10/04/2024 18:09

I’m so sorry you and your family are going through this. Recently I read this and linking it here on the offchance it’s relevant or helpful at all for you:

Brain Energy: A Revolutionary Breakthrough in Understanding Mental Health
https://amzn.eu/d/3fXLxAX

Splitsplats · 10/04/2024 18:38

HillyHoney · 10/04/2024 17:41

I'm so sorry OP, and to everyone else on this thread in a similar position. My cousin suffered from (drug-induced) schizophrenia and it was horrific, both for him and his immediate family. I wish people could be made to understand the damage that cannabis can do to some developing young brains, although I appreciate that likely wasn't the trigger here.

My cousin also had drug-induced schizophrenia brought on by using cannabis. Very sadly, he killed himself. I have been told by numerous people that he must have been using harder drugs, but I am 100 per cent certain it was just cannabis (albeit lots of it from the age of 12).

Magyk · 10/04/2024 19:54

I know the op has been through a lot so I hesitate to criticise. That said in AMA you are supposed to answer all the questions asked. I don’t feel you have done this, not even slightly.

CelesteCunningham · 10/04/2024 20:15

Magyk · 10/04/2024 19:54

I know the op has been through a lot so I hesitate to criticise. That said in AMA you are supposed to answer all the questions asked. I don’t feel you have done this, not even slightly.

Perhaps OP found it more difficult than expected and has stepped away.

Or perhaps her notifications still aren't working.

Either way, not the thread for criticisms like this.