Published on 12, July, 2020
Hi
got some good advice about my son yesterday who has come off antipsychotic drugs, three weeks now, did start 2nd Sept,but after 35 days had really bad withdrawals with agression, my son was not like that naturally, i mean it was never part of his Autism like some experience. So we went back on pills, they aggitated so we went off. Two weeks s later withdrawals all over again it seemed, involved police, almost got taken , but decided not to. There was one more attempt of on pills again for 3 days . the MH health nurse said look a decision has to be made, on or off. We said well they are making him pyscially ill and the cognitive skills are ruined, she said off then, and go with the withdrawals.
It was also said the on off thing was doing him no good. So we are three weeks in since coming off the last time, some of the withdrawals is moods all over the show, and confusion, which has hit the speech and thinking. In some ways normal speech is trying to reenter.
I was advisd on this site the other day that after 13 years of antipsychotics that my son will take time a adjust, I was told by few people here it will be ok, and I believe this, i want to believe it.
The first time of stopping this drug it was between week three and four the agression got worst, usually at this point in the past we lose him to hospital and more drugs
There is alot of emotional baggage from the past like my ex going when my son was 6, hees 30 in two days and still weighs heavy on him. His brother retreated to his room for 12 years through OCD (autistic too) he has been out for a few years and survived without drugs, but that is baggage for my son, and during the time of the 13 year meds his Granddad has gone into a nursing home, thats baggage and hes been too engulfed in meds to see his grandadd for a few years. And the withdrawals and the brain adjusting is also stopping him. He can't begin to understand why he is there.
Last night he was gaming, he loves gaming, well it keeps focus, but it is also addictive and bedtines during the drug time have always been a problem. So there is sleep deprivation. Sleep was a problem when very little too, but he grew out of it.
Sleep was a problem too in 2010 before gong to hospital for first time, anxiety hit about his father and his brother and other stuff, it may or may not have given a period of mental health problem, but the drugs never helped and we believe it was misjudged as a psychotic illness, not Autistic emotional grief and hormones which are hard to handle anyway, he as 17!
Back to last night, it reached 3am and I needed bed, I felt ill, and it wasn't the first night of 3am either, when I mention bed at any point during the day, you can see you anxiety and mood do a complete switch.
It ended up with him shouting alot at my eldest and a tiny bit of psycical aggression, he was trying to hold it together.
The drugs have made him very "young" for now. He asked me for a story and he had that, the other parts of routine he didn't want, like affection and kind words and definitely not saying good night.
I left him so many nights in hospital, i think that has left an impression on him, so has all the other trraumas of restraints and needles and police taser 2 years ago.
He is in bed now, think he has got a few hours sleep.
Appreciate any comments to you lovely people.
Well, this is a hot mess for sure! Firstly I am shocked and not impressed that he seems to have not been gently and gradually weaned off the meds. All drugged up to none at all to all drugged up to none at all would make any one struggle (to use a gross understatement!).
My husband is on antipsychotics, a very low dose, and when he wanted to come off them it was a gradual thing. As his dose was so low it had to be something like 2 days on one off for a a while, then one every other day, then two days off one on, the process took weeks or months. Sadly he did need that low dose and had to go back on, when that happened they had to hit him with a high dose which once he had stabilised we had to again gradually reduce. But there is no way your son should have been forced to go cold turkey! It sounds like his dose of whatever was higher than my husband's and it made him unstable coming off it too fast by which I mean not enough months on one of the steps! So it is no wonder your son's brain is struggling.
My husband also had some sleep issues. His psychosis made him prowl around at night, it was hard for him to stay asleep. We were advised about sleep hygiene and he did have sleeping pills for a few weeks, but 6 weeks is the max I think and they are problematic as they help one fall asleep but don't keep one there, and also the sleep is not as good. But it can help the habit to form. Not sure if that would help or not, it is not right for everyone and stopping with them was also a process!
As for sleep hygiene, that was basic things like trying to have bedtime and waking up time the same time each day and sticking to them. Staying in bed when one is supposed to and staying out of bed during the day. We do not always manage such things (I myself spend a lot of time in my bed on my laptop because it is warm and comfy here!) but it is a principle to look into.
It might be worth considering whether his bed is a nice place for him to be. You suggest he has bad associations with it from hospitals. Might it help if he had a fun duvet cover with fabric he likes, maybe prints from his gaming? You can get all sorts of fabric prints these days and even have some custom printed. Does he spend all his time in his bedroom or does he have another space which is his own, or are the other spaces in the house communal? It can be difficult to optimise, but if he has to be in his own room a lot then having different zones for sleeping and being awake might help?
It can be very difficult stopping doing the thing we are hyperfocused on, like his gaming. Transitions are hard anyway, and switching from a fun thing to a dreaded thing is horrible. Is there a way to reward him for stepping away from the game? I'm not sure how to handle that really.
Is he taking any exercise, especially outside. That is so good for anyone, and has definitely helped many of us. Time in peaceful nature, relating to animals, getting the daylight which helps set our body clock so we sleep and wake at more natural times, it hits so many things! And physical exercise which makes our body tired so it is easier to fall asleep and stay asleep, and it also can give give good brain chemicals like endorphins and the like. Also diet is important for welbeing.
So many things to consider! If you are already doing some of them, great! If not then it might be too much to change everything at once. Also try not to make too many demands on him at once, work on one thing at a time. It's just hard to know which one to try first - maybe ask him if he thinks anything might help, or if he fancies trying anything, like exercise or a new look for his bedroom. Changing too much at once is overwhelming though and can lead to more meltdowns.
I hope you find something which helps him.
yes, thanks for your answer. will think about it all. he was weaned off, but probably not gradually enough, he was on Haloperidol, it made him pyshyically ill, like a lot of them did as well as make a decline in his mentally and cognitive and motor skills, so he was on 0.5 mg which is the lowest dose for about 5 months. but going back on as i said made things worse.
yes, his brain is all over the show, but there are bits that are trying to come back, like sense of humor. And memory, although it does seem to be pretty far back things.
I will get back to you on some of your comments, tryin to get ready for the day right now before he wakes, thanks for your support and it is hepful to know people do get married that are autistic, well i knew that anyway, my x was, no diagnoses, but my ytwo sons inherited autism for sure.
s
Ok , a further answer to Triker, I really don't know how this forums work, so apoligise if I am doing it all wrong.
My son as I may have mentioned was misdianosed at 17 and is nearly 30, and has been on all sorts of drugs, that have reduced him to being very dependant on me, he was/is very intelligent, taught himself lots languages and was a little behind with some motor skills , but could catch up. As soon as the drugs wet in it wrecked his chance.
I don't know when or why your husband was giiven antipsychotics, my son was first prescribed at 16 for anxiety, which we know is the corner stone or nucleus of Autism, it was olanzapine and he took it for 3 days after which he said "I can't take this mum, its making me lose my memory" which as I have said before must have been more of a block than "I can't remember what I had for dinner last night"
When he ended up in hospital, this was the drug they piled on him,30mg they got to, when he was in hospital, he ran a mile and a half toward the town, and knocked on a residence door, somehow he remembered our phone number and thevman I spoke to , i said to him hes got psychosis, hes come from the hospital, he said "I don't know about that, hes very confused" Those words stayed with me as before his last admission , where he had been gradually reduced from Clozapine of all drugs for FIVE years, and had reach 50mg, and had been shoved another drug....well anyway there was a MH nurse who travelled with the Police and he said "its not psychosis" and he was probably at his worst.
He also said try not to let him go to hospital. Unfornately he did. We are hoping it wont happen again as his last admission was seclusion for a month! Yes it is a mess and we are all traumatised.
I'm glad yr husband can function on drugs although I don't know the reason for him coming off?
Yes, exercise , has been offered and refused, but also mentioned a couple of times by my son, about going for a walk, but his short term memery is shot and when it comes to doing it he can't handle it, anxiety goes up.
My mum has said exact opposite of your sleep advice and said go to bed at midnight and get up later, the problem, my mum has failed to see is bed time is fearful in itself, so not even a late regular time would be doable.
And then she went onto say people do night work...
Thanks for your large input, I will have another look after my late breakfast!
Being that we are total strangers and second guessing things a bit we are doing pretty well. Tell me, is it you or your husband who is Autistic? If its your husband I would be interested what are the signs of his psychosis? You say that he has been accurately diagnosed.
Yes, my son is very intelligent and was and can be again I hope a great communicator, that has been damned by the drugs, actually taking these drugs has made his brain ultra sensitive to even things like Camomile tea we found, kind of had drug qualities that never affected him years ago.
You used to hit a pole in the garden with a stick, yes we did make our own fun with things years ago without great expense, or was it more of a therapy for you. When you are young i think somehow you drain off your tension with these activities and get away with it because we were young, think you should still be able to do silly things when your an adult too, make life a lot less stressed, what do they say act your shoe size, not your age.
My son....hmm, I just thought a whie ago he hasn't been able to advance into adult conversation, so hes got all what hes going through and then wham hes an adult. He did say the other day "I'm getting old" "I'll be thirty soon, how many more days" then he mentioned something about getting married. Which is better when he was high on hog of drugs once saying that he was already married, they may have been around the time he was in hospital with a guy who said he had three wives. My son is very perhaps gullable is too strong, trusting is prob more like it. When he was at school and started to experience bullying, he couldn't understand why everyone couldnt be "friends".
My eldest is right in the deep end helping to look after and encourage his brother, he had a time in his room for about 12 years and came out to helping to care for his brother. It is helpful though to have him around after not having a man around for years (their father) They both suffer OCD and anxiety on the Spectrum, one diagnosed in hospital which was a lot of reports rather than discussion from my son who was super drugged up.
My eldest, no official dignoses, but at this stage it isn't really nesasary, he had speech therapy, he has obvious OCD, he suffers anxiety and I have had to support him a lot with Social interaction even now at 33. I don't mean I stand by and speak for him, but I give him loads of tips.
At 30 years old he asked me "I am worried you are going to make me leave home, now I'm thirty" Thats the Autistic mind for you, that thinking you think things should happen on a time scale. Well I set him straight I even tried toput his name on the tenancy as a joint tenant, but the Council said they didb't do that anymore.
Its been a long haul as a family and there are loads more skeletons, but we need to concentrate on my youngest right now.
He is supersensitive to everything at the moment. And hes suffering with a tooth problem to boot. Needs root canal work done, which is on hold, thats not helping either.
He did phone his nan last night, only talking about games for her to get in, she has a couple of consoles down her place in eye shot of mine, i encouraged her to get them set up, so my son has an incentive to go down the road, she is not a great communicator with her grandsons, thats another story, which is always being encouraged.
Mu son has also got an adversity to have his hair washed, supported more since drugs and doesn't want a shave, this has gone on for some weeks. He does get in the bath because he has done this for long time, years, apart from after his first admission, Olanzapine had made him forget loads including, bathing, drying himself and cutting his food up. I had to reteach him.
With sleep, my sons MH nurse said just tell him your going to bed and hope he follows, that worked kind of a couple of times and then it didn't. Cunting sheep for him worked once and then it didn't, everyday seems a lttle different.
For someone Autstic he is very adventurous on foods over the years. He likes thngs like shushi, olives and other things that I couldnt face. And when i say what snnack would you like he always says something different. Almost. The other day "heres some things for your tesco list" i think it was olives green and black. He is thinking and remembering and speaking,but it isnt huge and it isn't enough to say things are changing, but without me realising perhaps they are?
He asked his brother to print off some Japanese letters yesterday, before meds he taught himself Japanese, read and write, chinese, Hebrew, Greek , and others and could speak all "a little" good potential there and not learning disability which the drugs made him and still make him appear.
When in hospital care twice they tried to pass him off to the Seldon Centre, who assessed him and said no hes not larning disability. I could have told them that if they han't gone behind my back.
One nurse really had it in for us and tried all ways to discredit us as a family between 2013 and 2015, tried to gain guardian ship by making accusations about me, but they were "unsubstatiated" by his boss who interviewed me and my mum.
That wasnt good enough for him, so he got him moved to a PICU in Basildon 50 miles away and put on Clozapine! Best thing they did actually apart from the daily travel, as it was a fresh lot of eyes and we had time to prove to the DR we werent a threat to my son. We involved the SS and CQC to get time with my son. He was in Basildon for 8 months and it took us just over two months to gain leave, the drugs were still given and was hell for him. We couldn't go home for leave so first pitched a tent and then when rains came foind motel, it cost us over £5,000.00, the local hosital before Basildon let his teeth go with hygiene, it cost nearly £2,000.00 in Basildon, we had to find a dentist to take him. And the travel cost £11.000.00, there was 4 weeks of taxis as my dad (our driver) had to have a life saving op during this time. Ahhhhhhhhhh! Visiting two hospital in one day we were.
Somehow we got back the travelling money. The dental money. But wouldn't cough up for the Motel and camp site. We fought that on and off through the years and it came to a halt recently as Sr Norman Lamb an ex solicitor wrote for me (we met through twitter and had a mutual aquaintance, non politicol) protesting that this money should come to us. However this is MH NHS, they know every wriggle and every move to get out of what they dare.
Must push through day, havent yet had words with my son. who I think is just waking properly. He did acknowledge my eldest when he said hello to him.
My mums cooking and hope to eat soon.
I have waffled as you do, sorry. Anyone feel freel to comment or advise