I’ve noticed the same thing with my son - during his dr visit, he limits his conversation to yes or no sir. He doesn’t really carry on a real conversation with the doctor so the doctor turns to me and asks … well? Due to my son’s violent outbursts, I can’t really say much then so I’ve emailed the doctors and gotten in pretty good with the nurses in the office. Unfortunately, Clozapine didn’t work for my son and I was wondering how your son was doing now? Still on Clozapine? If not, what are you trying now?
Good evening. Yes, he is still on clozapine 300 mg. It is sometimes very hard to detect any progress but I do believe there has been some. He is stable, taking an online class, doesn’t pace so much any more… instead goes for long walks…but still talks to self/ mumbles a lot which I find hard to take at times. His doctor does not feel it is worth the risks in increasing the A/P or adding another… that this would not necessarily rid the talking to self symptoms. It is a very long and frustrating road…
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I’m glad to hear that he is doing better. My son did the pacing thing and mumbles to himself - a lot. Now, he rides his bicycle - a lot - so maybe that takes the place of his previous pacing. Your last statement reminded me on the song by the Beatles (dating myself here) 
Also I wanted to share I get
just some tips on mental illness via email and they have added some tips on schizophrenia - I thought that was pretty neat - like it’s normal just thought I would share
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Clozapine is not available via injection.
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Again, 300 mg is a very low dose of Clozapine. Is there some reason specific to your son that the doctor does not want to move it up a notch? I would ask the doctor and tell him your concerns. Sometimes we have to settle for some of the symptoms that may remain, but many people are on higher doses of Clozapine and do fine. I suggest reading the book https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X/ref=sr_1_2?dchild=1&keywords=clozapine&qid=1618533246&sr=8-2
and look at this post on the CURESZ site https://curesz.org/clozapine-success-stories/
Good morning.
His doctor does not believe he needs more Clozapine…that as you say, there are certain symptoms like he’s talking to himself that will remain. He does not believe more will squash out those symptoms and possibly trade for other symptoms. When I express my concern over this it is dismissed as more something I have to get over. It is a little frustrating to me as I think differently regarding the approach… I must tread carefully though because my son really likes his doctor and he has been the only doctor that has been able to get him to take meds regularly and put him on clozapine. I have read the book you suggested-very informative!
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My grandson since starting clozapine 7 years ago has a normal life. He works full-time and has friends. He only takes 200mg and does very well. This drug was a miracle for him.
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I agree. It has worked well for my son too. He has been on it for many years and as he improved he got used to the monthly blood draws.
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I suggest reading this book which devotes an entire chapter to adjunct medications and vitamins that can be helpful along with Clozapine. In fact, I need to re-read it myself so I pulled it out to do so!
I’m so sorry for your loss Stan. Are you researching how to navigate the mental health system?
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Hello all. My 27 year old son is compliant for 3.5 years on chlozapiene but besides taking meds ( lexapro also - used to be prosaic before) totally not functional. Lies down and then if awake constantly asks for dad continuously ( we work from hime and cannot even then talk on calls… have to mute) and if we can coax him to walk daily it’s a blessing. Paces sometimes. Eats sometimes - often late. No activity like video games, reading, watches movies on tv with us evenings as part of the routine. High ambivalence to get him in the car or out of the car to walk , to go to the supermarket to do anything… he says “give me 5 min but 5 min turn into hours now years”. Very anxious of… anything and everything. Yet the doc says Chlozapiene is a wonder drug. Anyone else in such a situation? Even a shower ( once in 10 days or so …) needs pursuant beyond our human capacity I feel. He is also in control as we know he’s fragile. He’s not angry he’s flat. He is responsive if asked - otherwise just flat. Looking for any clues on this. TIA🙏🏽
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He is in two word “ STUCK and HIDING”
Hello, maybe it’s the dosage not being high enough or maybe it’s the mix with the other AP - don’t give up keep trying and have lots of conversation with his doctor, good luck
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What is the dosage for such a situation where it is affective? He used to go to the gym and even some community college but this flat and total resistance is very persistent. Yes am patient will try lifelong. He’s been ill for 9 years since he was a freshman at college.l… we are struggling. Any clue what is a recommended dosage? Also what is the abbreviation you used - what does it stand for? Never giving up - but asking. Very appreciative and thank you - mom
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What about tapering it ever so slightly? No more than 10% in one month. If he wants to do this he could always go back to a previous dose.
I believe that AP stands for antipsychotic. Don’t think Lexapro would be an AP.
Thank you - yes the doctor adjusts very gradually and carefully. He is on Chlozapiene and lexapro and the former one is the AP then. Thank you for the abbreviation explanation. God bless you all.
@Momdad was your son this way from Day 1 after going on Clozapine, or did it slowly get this way after years on it? I’m concerned because my 34 y.o. son is on high-dose APs – actually 2 of them. 20 mg of olanzapine and 600 mg of Seroquel. He’s doing some of the things your son is not doing, like taking walks and reading, but other things are eerily similar, like the sleeping pattern and not doing much of anything one would equate with recovery such as working/studying.
How do doctors find the lowest dosage which works, but does not make our family members dysfunctional? And without some attempt at non-pharmaceutical recovery work won’t this kind of “stuck and hiding” behavior turn into a lifelong habit?
Can be a lifelong habit if it gets super comfortable without accountability or intervention . Yes I am afraid he went from no treatment ( erratic aggressive (a bit ) behavior) to treatment and then Chlozapiene worked better. He used to drive himself to the gym and drive himself to community college. Since then slowly he has become more and more non functioning ( I would not say dysfunction as he is really non functional). He walked today with tons of coaxing and went with his dad ( my husband) to Costco but this was after 4 hours of trying and we could do this because it’s a weekend. On working days, after work it’s hard for anyone to try to reason/ coax/ plea/ beg and persuade for 4 hours . To answer your question - he’s on the verge of so much ambivalence that it crippled him to do anything even switch on the fan or the light. Constant back and forth in his mind on this. I wish his mind peace and I wish his mind recovery every second. Yes the minimum effective dosage is required but the doctor tries his best and callibrates but is it ( non functioning part and ambivalence) side effects or the actual disease we are unable to say ( including the doctors ). It’s really a very primitive field compared to other fields of medicine since there is no physical or tangible concrete proof ( like MRI or other imaging) schizophrenia or schizoaffective disorder. We are tweaking ever do little and taking it literally one day at a time. Just finished a movie with him and calling it a day while he listens to his audio books lying down. What is this ambivalence usually cured by. Any clues on the meds? Why is Chlozapiene such a wonder drug but not working for my son?