Interesting, how old is your son now? Does he have any friends or able to work part time? And did the clozapine cause any excessive weight gain?
He just turned 35.
He talks about getting a job and I think he could work part time in a very low stress job where management wasn’t on his back all the time.
He doesn’t have any friends. When he goes to the psycho-social clubhouse, he’ll usually find one or two people he can talk to.
It’s not the schizophrenia that holds him back. He has had very bad social anxiety from way before he had psychosis. I think he could have friends - he just doesn’t have the skills to make them or a good way to find people he would have common interests with.
The social anxiety is better now though. He can go into a store with me now. He doesn’t freak out if someone speaks to him or think everyone is staring at him. He can ask a worker for something if he needs to.
He did gain weight with the Clozapine, but it’s slowly coming down. He went from about 130/140 lbs where he looked anorexic to about 250. He’s currently at 210. 160-170 would probably be an ideal weight - he might not get that low on the meds, but I can see him settling under 200 which won’t be bad. He’s not actively trying to lose weight - it’s just coming off because he’s eating better.
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Thanks for the info. It is always helpful and hopeful to hear other’s stories. I pray your son continues in this good direction. My son is 29, gosh the years go fast! He is currently unmedicated since April 2024, his last AP was Abilify, which he was on for 4 years. Before that he was on olanzapine, vraylor, risperdal and maybe one other AP. His weight gain on Abilify was scary, his normal wight should be around 180 and he was at about 350! He had an insatiable appitite for any and all junk food. Anyways he had lost weight since he went off his meds which is the only good thing about it. He has maybe lost 30lbs. I always think clozapine should be his next AP, but I doubt he would want do the periodic blood draw that med I read requires. Anyways, we just keep trying with these guys because we love them.
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They have to go on Clozapine in the hospital and they do the blood draws daily there. Then, they’re in a pretty good state of mind by the time they’re released.
I think he had either 6 months or a year where he had to get weekly draws, then it was biweekly, then once a month where he’ll stay.
I didn’t think he’d go along with it either, but he’s done it. He’ll complain a little if they don’t get him on the first try, but that’s about it.
I’d say my son’s appetite is normal now. I keep a big tub of salad made in the fridge for me mostly - but encourage him to eat it. Sometimes, he’ll get it on his own as long as we have a dressing he likes. Other times, he won’t - last night looked like a Cherios night.
But, he doesn’t ask for junk food all the time - he’ll eat healthy if I take the time to make healthy, so he doing pretty good.
I think the initial weight gain on Clozapine is because it makes you really tired at first. I accidentally took his meds one day instead of my own before I woke up fully - I was out of it for a couple days. I thought I’d just sleep it off, but it was like I was awake but couldn’t talk well or move well. I remember laying on the couch, reaching for a water bottle and my hand kept misisng. Then, if I got the bottle, it’d slip through my hands. It was terrible - but he adjusted quickly. All in all, it’s been a great med.
He’s been on all the things you listed plus others - even injections. Olanzapine worked well for years then quit - or he stopped and it didn’t work when he started again. The rest - not so much.
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Thanks for all the great info! That sounds scary when you took the wrong med, it probably was a high dosage. Most everyone I hear of from Nami meetings and this forum have success with clozapine. I am hoping my son will have to be taken to the hospital soon and he gets on a new med. It is very difficult in our state, Illinois, to have someone involuntary hospitalized. My best hope is that he would go on his to the psych ward by his choice, but that doesn’t t look like it will ever happen. Just waiting here to see how things unfold. I really do appreciate your replies, it is always helpful to hear other’s stories dealing with this illness.
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I didn’t think my son would ever go either.
But, when he’s really sick, he’ll eventually be terrified that someone/something is coming to hurt him so I sell the hospital as a safe place where no one can get to him.
Then, by the time he agrees to go, he’s visibly ill - usually hasn’t slept for a week or more and has stopped eating. He’ll have a compulsion to talk about his delusions at this point and be visibly manic.
They always commit him as being a danger to himself not because he’s suicidal but because he can’t protect himself - like he would go stand in the middle of the street in a daze if you turned your back on him for even a minute. He will alternate from hyper/manic presentation to being very out of it and somewhat unresponsive. People have mistaken it for a drug overdose and, once, they kept him in the ER for a long time because his pulse rate was so high they said they were worried he’d stroke out so wanted him stable before going to the mental health part of the ER.
You should read your state’s laws and get an idea of what to say should the opportunity present itself to get him into the hospital.
You might also have to REALLY advocate for the Clozapine. It took both me and his case manager pushing for it and 3 hospitalizations on the injectible meds that didn’t work for him before they’d try it with him. I think maybe his psychiatrist even called - it was a real journey to get him there. That was the only time he was hospitalized, but it was 5 times in 10 months. Each time, he’d come home better but not great, then go downhill and have to get as sick as I explained before he’d agree to go to the hospital.
Now, since he lives with me, he has no choice in taking his medication. I put it in his weekly med container, then remind him if he doesn’t remember on his own to take it, and most of the time I watch to see that it’s taken. But, I’d know within a day or two if he doesn’t take it. He has enough insight now to know it’s keeping him out of the hospital.
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It is good you are in this stable place now. What a relief to at least know he is not in crisis mode, as my son is now. It gives me a very uneasy feeling all the time. I try not to worry too much because I think things will work out somehow. My son will only go to the hospital if he is forced by the paramedics and I want that to happen so he can start living some kind of life again, but I know that will be so traumatic for him. Right now he just sits in one room of his place, which is littered with garbage and smokes and talks to himself. I know this is not sustainable, so I am waiting for something to happen where my son can be helped, hopefully in a kind way.
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My son’s been on Clozapine for almost 6 years now and volunteers for a furniture upcycling and delivery charity 2 days a week - he’s done this for the last 2 years plus.
This role meets so many needs and the charity manager understands my son’s particular needs - he feels valued and is part of a team.
Sometimes he thinks he could move into a paid role doing something similar but the potential stress is too much of an obstacle.
Perhaps a volunteer role at some point would work for your son too?
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Yes, that would be very good for him, if and when he is stable. I have often suggested it to him in the past, when he was on meds, and he never was interested. Hopefully as he gets older and can get stabilized. It is good to hear your son is doing good enough to volunteer. My kind thoughts and prayers to you both.
That’s so kind of you.
Every good wish to you too, travel hopefully