I feel like we lost our son

L

linus

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#1
Hi,
My son (17 years old) has entered a psychosis which started as paranoid thoughts after a "party" in which he was given LSD, marijuana and lots of alcohol and then he couldn't sleep for several days, but we noticed quite late. The initial paranoid thoughts transformed in a whole powerful scenario in which he is a subject of a sociological experiment so that other people can see how he suffers. Basically everybody is against him (including us) and he feels scared and angry at the "society" (which is very well organised for this).
We managed to get him to the hospital with the help of the police (he ran away when we proposed to go to an emergency room after he told us that we want to kill him) and he was held in the hospital for 10 days with a start on Haloperidol that was switched to Risperidone 3 days later. Because of high anxiety they added Lorazepam, Sodium Valproate and Trihexyphenidyl and the Risperidone was gradually increased in 4 weeks to 2,75mg/day. He was acting like a zombie because all this medication and didn't really mention his delusional ideas, unless you would insist in discussing things. We went back to the psychiatrist and for whatever reason she cut in half the risperidone and limited lorazepam to just 1/2 dose per day and now he is not that sleepy, he is pretty much connected to what happens around him, but the delusions have come back, although he tries to keep them for himself because he is afraid of us putting him back in the hospital.
We also started neurofeedback sessions with him which seems to have calmed him down, although to his therapist he mentioned that he is afraid all the time. Now what is weird is that he keep on saying that he can't give up on his thoughts because this would mean to give up on himself and that he would get transformed to another person, this seems like an emotional blockage and we hoped that the APs would help him, we even expected the doctor would increase the dose, although we are happier that he is more connected to the world. I think in a way he managed to fool the doctor so that he won't be put in bed and he found a way to concentrate and deliver the "good" answers on spot.
For us it's a total nightmare, my wife is crying all the time (whenever she can so that he doesn't see her), I am panicking all the time and trying to cope with some medicines as well.
I kept on reading about various clinical guidelines and there is this recommendation that after 6-8 weeks we should switch the AP (we are getting to the 8th week on next Thursday), but now with this dose reduction I don't understand what's going on and the psychiatrist doesn't want to explain to us anymore. Is this is a game of patience, is there something better we can do as carers? I was thinking to go for ECT or electro-magnetic stimulation, we are completely lost.
 
claude

claude

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#2
Your son is very young, his brain is still developing. I personally would think that the lowest dose possible is best. These drugs and treatments have extreme side effects that can cause lasting physical and emotional damage. I would advise you read around so you get a balanced view of how these drugs work and the benefits and risks of them so you are best able to support your son. Reading the bitterest pills by Dr Joanna moncrief and madness explained by Richard p bentall helped me as a person who has suffered psychosis.
And reading the advice on minds website about how to support someone experiencing delusions has helped me to navigate my relationships to loved ones while they are experiencing psychosis.

Your son is very very scared and you and your wife are too. The trouble is the different shape of your fears do not align and could reinforce one another. Being too forceful with someone experiencing delusions can increase their fear that everyone is out to get them.i would suggest you look at minds website,Helping someone else | Mind, the mental health charity - help for mental health problems

When I was first hospitalised I was put on a high dose of rispiridone and it did nothing to help my delusions and hallucinations. I was however so sedated that I didn't care anymore that I was going to be killed (my delusions actually became worse because I believed that the whole medical profession was in on it) and I stopped speaking about it because I didn't see the point in anything. The depression that antipsychotic caused in me is like nothing I had ever known. It is really scary when someone you love has strange beliefs but the most important thing is to keep him safe and that he feels loved. It took me several years to get out of my delusions but I am now delusion free and living a more positive life. Be patient and don't give up hope.

In the long term therapy and the unjudgmental support of friends and family is what helped me the most.

I believe you and your wife need support to be able to best help your son. You will all be under a lot of stress. I would advise therapy and talking to organisations that help carers for support. I wish you luck and I wish your family health and happiness
 
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linus

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#3
Forgot to mention that we started some kind of psychotherapy and the psychologist assumes that he already had a depression and acute social anxiety and the drugs were the last drop for this unbalance.
 
claude

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#4
Sounds like continuing therapy to address the social anxiety and causes of depression is a good way forward in that case? It's great you have been able to get your son this support. These processes take a lot of time. I know 8 weeks for you feels an eternity but your son will need time to heal and process what he has been through so that he is able to move on from his paranoid thoughts
 
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linus

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#5
Well of course we would like to go forward, but both the psychiatrist and the psychologist claim that they can't really work with his cognition because the delusional nucleus is still "powerful" and everything is biased or so. So we only go around the bush for related issues like anxiety and depression. In a weird way I think the neurofeedback sessions helped him quite a lot (I monitor his stress and sleep with a fitness watch) and he is more restful and he can sleep better since we started.
 
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linus

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#6
We had a meeting with the psychiatrist today and again totally against our expectations she reduced the antipsychotic medication. We know he is still delusional, but he also doesn't care about anything anymore (that's what he says.. he feels "nothing", maybe a bit sad). On the other hand I think I somehow got used with the new situation so I lowered my anxiety a bit and maybe I can be more of a parent and less of a person trying to solve everything.
 
claude

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#7
Glad your anxiety is reducing. I hope with time your son let's go of his delusions. It took me years to leave mine behind, recovery can be a very slow process but it is a possible one. What you say about not trying to fix everything all the time sounds really healthy to me and like a great way to be supportive. It's understandable to want the best for your son, it's such a shame we can magic things better for our loved ones but that's the way of the world I guess! I wish your whole family better times round the corner.
 
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linus

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#8
So, I've watched the "Open Dialogue" documentary and started reading about this approach used in W. Lapland - Finland. Although I couldn't find yet the details of the therapy approach, especially when they do the "talk-therapy" "per se", it seems what we do here is totally the opposite of this. Basically we keep on having separate meetings, it's either us the parents or our son, nothing together so I am starting to thinking that for a paranoid delusional person this must feel like a continuous conspiracy since we are part of his scenario. We have a meeting this Friday with the therapist (just the parents) and I'll try to convince her to start doing things together, to come with all the discussions in front of us. It's like the "big elephant" in the room, we all know it's there all day long, but we act like nothing is wrong and try to live a normal life. Wth?
My father comes from time to time and tells me that he sees nothing wrong with his nephew, that even if if has these kind of ideas, he doesn't see them as delusions, but just normal conspiracy-theories :)) Why would you like to live by seeing conspiracies everywhere?
 
boudreauj4

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#9
There was a person on this forum who used to talk about Open Dialogue a lot but he stopped posting. He used to complain that it wasn't available where he lived. I read up on it awhile back and mentioned it to my psychologist who said she had never heard of it. Wouldn't you think a psychologist who works in this field for a living would know more about it than me? You would think they would want to use a technique that is reported to have such good results, right?
 
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linus

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#10
The biggest problem is that it requires quite some resources (staff) trained and with available time. In my region it is not available, but I am thinking to convince the therapist to pursue some of the principles that these guys have set, I guess she will have to take the time to understand more..
 
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linus

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#11
Glad your anxiety is reducing. I hope with time your son let's go of his delusions. It took me years to leave mine behind, recovery can be a very slow process but it is a possible one. What you say about not trying to fix everything all the time sounds really healthy to me and like a great way to be supportive. It's understandable to want the best for your son, it's such a shame we can magic things better for our loved ones but that's the way of the world I guess! I wish your whole family better times round the corner.
Hi Claude,

I was reading again your reply and we are in a phase where we monitor our son very closely. What we figured out based on how he behaves in real-life and online is that he is constantly looking for "signs", the kind of signs that would give him "instructions" or "warnings". So he entered this behaviour and somehow we'll have to challenge him with the help of the therapist. I was wondering if you did something similar and what changed?
In the meantime the psychiatrist lowered the dose of risperidone even more (to 1,25mg/day), sounds like a maintenance/preventative dose, because she thinks she is more and more rational and connected to the reality. I still believe that he found a way to behave properly at the weekly review, on the other hand this psychiatrist is also a professor and I guess she wouldn't be tricked that easily.
 
mjayy6

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#12
I am so sorry that you, your son, and family are having to go through this very unpredictable time. Though, things may seem uncertain now, they will slowly progress. I am going through a slightly similar situation in ways and it's a roller coaster. A bit of advice is to stay calm around your son, especially when he is experiencing a lot more delusional thoughts than normal, people freaking out, at least for me, sets me over the edge. What helps though is to stay calm and take through those thoughts with him. Also, this is kind of obvious in terms of every other time, but eating enough, drinking water, and getting enough sleep during this time period is so much more important and crucial. Anyway, I hope things continue to improve and that his medication dosage continues to decrease!
 
claude

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#13
Hi Claude,

I was reading again your reply and we are in a phase where we monitor our son very closely. What we figured out based on how he behaves in real-life and online is that he is constantly looking for "signs", the kind of signs that would give him "instructions" or "warnings". So he entered this behaviour and somehow we'll have to challenge him with the help of the therapist. I was wondering if you did something similar and what changed?
In the meantime the psychiatrist lowered the dose of risperidone even more (to 1,25mg/day), sounds like a maintenance/preventative dose, because she thinks she is more and more rational and connected to the reality. I still believe that he found a way to behave properly at the weekly review, on the other hand this psychiatrist is also a professor and I guess she wouldn't be tricked that easily.
Hi linus,

I have to be honest here, if I had been being closely monitored by my family when I was still experiencing delusions, the way that you say you are with your son, I believe it would have made me worse as I would have felt unable to trust my family and would have felt further alone with what can be a very lonely illness. It would have reinforced my delusions and delayed my recovery.

I am not saying that is definitely what your son would be feeling, but I do think it is a risk. The advice that I have read and used from Mind as well is to not be too confrontational with a psychotic person about their delusional beliefs. It is better not to engage with them about it so the beliefs don't become further entrenched. I understand you want your son better in a hurry but IMO the best way to talk about someone's delusions with them, is to say that you don't see things that way but you understand that it must be very scary for them to have these thoughts.

The things that helped me to leave behind my delusions were time and focusing on physical health and emotional well being with simple things like getting enough sleep, eating well, going for walks, being creative, reading when possible, journalling. And most importantly of all for me, was stability in housing and benefit income. The less stress the better. This way initially the thoughts start to hold less importance and then you (meaning the person experiencing them, NOT those around them) can slowly challenge them. I had some therapy, we tried psychosis focused CBT but for me it wasn't that helpful, what helped me more was just having the space to talk through what i had been through with the psychosis with someone who did not judge my experiences or make me feel ashamed for what i had thought and done. It helped me to make sense of it all and to realise how depressed and anxious I had been before hand and how with too much stress this had 'flipped' over into full blown psychosis. It made me realise how i needed to control stress. I had been unwell for many years.

Letting go of the delusions didn't happen immediately, it took several years and had many ups and downs. I was told by my doctor that an episode of psychosis takes at least 2 years to recover from.

I agree that the psychiatrist is unlikely to be 'tricked' they are very suspicious by training and tend not to reduce drugs without reason. Antipsychotics in general are more effective at dulling down hallucinations than they are at reducing delusions., and often a lower dose can be more effective because you are able to think more clearly than on a higher dose. Being able to think clearly is more likely to help your son slowly navigate his way out of what he has been through. Antipsychotics, were initially called neuroleptics, they are a form of major tranquilliser. If you realise this about the drugs it is easier to understand why it is good they are being reduced. They cause physical and emotional changes. It is SO much better to not get stuck on a high dose for a long time
 
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linus

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#14
Things seem to be better at the moment, especially regarding the negative symptoms. We see him paying more attention and working for some personal goals (some IT software development), he seems to smile more often, however sometimes we are afraid of the idea that he is smiling about are "funny" things about his delusions. So we know that he still has the delusions and probably he will hold-on to those for a long-long time, but I guess if he is not panicking anymore, then it's an achievement and he could focus more on "our" reality. The pmed didn't change any medication last week and it seems we are moving to fortnightly review which I think it's better. This weekend he told me that he thinks that his phone is tapped and he asked quite a lot of things about who is actually listening to the phone calls, etc and what police department is actually handling this. This delusion is not bizarre it is somehow started from his guilt of taking the illegal drugs and I've even offered to go the police and talk about it and maybe feel a relief in the end, however the therapist advised us against it, she keeps saying that while in delusional "mode" testing reality it's a never ending process and it would bring anxiety rather than relief. This is something I can't really understand, how much the delusion "controls" the mind of the affected individual and how much can one reason. I still see him looking for "signs" everywhere, he still has some words triggers like: Donald Drump, Air Force, Russia, etc.
And as a side note: when he tries to develop new software things, he asks for my advise and if something doesn't work for him and I repeat some steps and it works for me he says something like yes, the computer responds to you and it has something against me. The good thing is that I have some patience and find exactly what he missed and explain and then he seems to accept the new explanation.
 
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linus

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#15
Monthly update:
Our son is way better, as his therapist told us he is very connected in the therapy sessions and seems to be present in general in any situation. A lot of his "old" self is back on the line, including spending hours in playing PC games and telling us "no" to a lot of things. However he still thinks there is an Organisation in which everybody takes part except him (I am not sure if he still feels that it is persecutory or not) and he still suspicious about something things when we are trying to be protective (like telling him to send a message when he arrives somewhere triggers him something like: oh, so you know that something will happen to me). He is going by himself at school and back home, going for grocery shopping and I started teaching him how to drive (he became pretty good at it even if we started with an automatic and then switched to stick). When looking at a day by day trend there is no much to see and my wife is overwhelmed by the prospect of long-term illness, but when I think about how it all started, how everything was 1 month ago, then it seems like we are miles away. I think that it will take at least 1 year, maybe even 2 to get to a stable and comfortable state and as someone said: recovery is a never-ending process, it's for life, it becomes an adaptive skill. We are waiting for the antipsychotic to be reduced to even a lower dose next week (something like 1mg/day of risperidone).
 
claude

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#16
Glad to hear your son is making so much progress Linus. Best wishes to you all
 
boudreauj4

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#17
It's good to hear your son is making good progress. After my first psychotic episode it took about a year before I was just about completely better. As in better I mean back to my old self which wasn't really very perfect. But I was well enough to move on in life.....college, girlfriend, good job, marriage, kids, happiness. But then ten years later the illness came back and has never left me this time.
 
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