Our beautiful son is 25 and was diagnosed when he entered college to be suffering with schizoaffective disorder. It’s helpful to read the ideas here about what other parents have tried. I like the idea of a living situation with other people who are mentally ill. We have him in independent living now, which is just renting a bed with other people, but he’s having to do chores and manage his symptoms which is a relief to see that he can live successfully without us. We’re going to use this as leverage to negotiate a new normal for when he moves back home. I think now we align his social security payments (newly approved) with his budget and what we will and will not subsidize based on his participation in work or volunteering.
It’s been disappointing but I’m managing it that no one is really working with our son on charting out a new life. I think we just have to get the medication mix right first as the voices dominate his life and consequently ours when we’re with him. Thank God he’s now cooperating with his medical team to work on this and is in addictive and mental health biweekly sessions so the path is started.
So I guess I’m hoping the answers is in not enabling him unless he figures out things that would bring him peace, engagement or satisfaction because I know boredom for our son leads to addiction which has lead to jail and if he gets arrested again it will be for along time. God is good and we’re a work in process
I was just wondering if anyone has had success with negative symptoms of schizophrenia while on clozapine and at what dosage. My son smokes heavily and drinks alcohol , so I guess that can effect the efficiency of the medication.
Hi. Yes my husband has been on Clozapine 300mg which he takes at night. It has helped his positive symptoms of sz. He also has an extra 50mg if he needs to take it during the day if he starts to have symptoms to carry himself through the day until his night dose. He has negative symptoms of memory loss, excessive drooling during sleep and cognitive issues. He feels that the negative symptoms are better than hearing voices and being delusional. We are waiting for his next appt (next week) with pdoc to inform them of his desire to try sarcosine with his medication, even if it is not recommended to take with Clozapine. I will be with him throughout the addition of sarcosine and we will both be documenting the progress. Take care.
Good to have your input. I am trying to very slowly expand my son’s realm of activity, even if it is just to sit outside in the yard instead of in the house. I just check with him before doing something, and sometimes he will accept, and other times he chooses to not participate. This weekend he elected to do a little more. It went okay, tho I could see him struggling a bit by the time we got home.
I’m just taking it extremely slowly, since I have seen the negative impact that trying to make him go faster can have. I know I’ve said it in another post, I sometimes feel I am moving in slow motion with him, but if that’s what he needs right now, that’s okay.
@dibby, I wish my son would talk about his illness too, but - he just won’t, and I’m not going to press it with him. I just give him another hug, and give positive feedback when he’s doing well.
Thankyou for sharing. I would also be very interested in Sarcosine in which I have never been told about or heard about. You say your husband is on clozapine like my son. As parents something which would give our love ones 20 to 40 percent improvement in their negative symptoms is worth a try. I will be discussing this add-on treatment at my sons next medical appointment. I would be interested to know how your husband is getting on.
Yes your son and my son seem to be very similar. My husband and I handle the situation pretty much the same also. We are there for him always and I give him reassurance as much as possible. I also hug him every day. It is interesting your son does not talk about the illness also. I thought it was just my son. I feel better now. I feel as his mother empowered now to help him through all of this even more. The feedback in this forum is absolutely wonderful.
Hi dibby. I will be happy to share our experiences with sarcosine with you. His pdoc appt is next week … we already have othe order of sarcosine on hand. Not sure if his pdoc will approve of it but we want to make sure they are aware of it. Please let me know how things our going with your son. Thank you
Hi Silent1. Yes that would be great if you can let me know about the sarcosine add-on to medication for your husband and whether the doctor says give it a go or not. Thanks
@dibby, this site has been very helpful for me too! My son still doesn’t completely accept that he has a mental illness, so it seems it can be irritating to him to talk about it. Only occasionally does he acknowledge that he has a mental illness. I understand, it has got to be incredibly difficult to accept that. It still carries such a stigma, and these young men had plans for their lives that feel completely blown to bits.
As long as he takes his meds, I am not going to push it, but will be honest with him when he asks anything and open to talking when he is ready.
Hi, my son is almost the mirror of yours… lays around all day, up all night… he’s on Invega Trinza 3 month injection. He has high anxiety… he will hang out with his friends and go to the local bar (he doesn’t drink), drinks water or soda… he seems to be hung up on Sweet Tea. We take him for a physical once a year and blood work to keep up on the diabetes scare. His anxiety keeps him from working or functioning in a social work setting… he is on disability, has medicare and for all intents and purposes you would think there wasn’t a thing wrong with him. That is of course until you realize that he hasn’t had a shower in days, hasn’t brushed his teeth and has the same clothes on that he has had on all week. He loves sweat pants and hoodies. He used to be GQ. I miss that kid, but I love my son and if he wants hoodies and sweat pants, so be it.
I think with my son now he accepts or is aware that he has a mental illness. But he also gets angry and irritated with me if I try to discuss it with him. He usually just gets up and walks away if I try to talk to him about it. This is how he has always dealt with it. He does not belong to any support groups, just prefers to handle it himself. Thats the hard part I feel being his parent, seeing him suffering so much and getting no where. But he knows I love him and I am here for him and I guess in time I hope he will feel that he can talk to me about anything.
My son also could sleep quite happily till midday, up most of the night. He is living in an apartment now, so that makes everyone get a better nights sleep. He has lost most of his school friends now, and has not made any new real friends. He social life is usually spent being with us parents and siblings. He does smoke much to much and drinks alcohol. He is on Closapine which I thought was going to be the wonder drug and would fix everything, but it has not. His negative symptoms have remained the same. He is on disability pension. Like your son I know he has anxiety and not comfortable being in a social setting.
Telling him to do the basics like showering, clean teeth and changing clothes is also an issue. I think as parents we just have to keep reinforcing and pointing them in the right direction. I hug him and treat him as normal person.
Hi, I’m new here:)). My son is also young and on clozapine for 6months. He is light years better than 6months ago. Went through hell for a year trying to find the right tx. He is 18. Did not complete 11 th grade this year because he was so ill. He seems to be without positive symptoms now but does have very little to say all day and never reads anymore. Conversations back and forth are difficult for him so he won’t talk. He’ll answer questions or ask questions only. He wants to do things with me or his dad all day; listens to music, a little online or you tube. Likes to get out and go but no interest yet in working, friends or volunteering. He used to be AB student, varsity tennis player, et…This has rocked our world. So glad to have found this site for support!!:))
There is really nothing you can do but continue to love him. If you can talk to his doctor about it - maybe he’s on too much medication. Its this lack of wanting to do anything productive and constructive that I find very hard to deal with. My daughter has gotten better but her energy level will never like her sisters or me. It’s all so very sad.
Yes it is the fact that he does not want to or more than likely he does not know how to do anything thats productive or meaningful that is so devastating as parents to deal with. The clozapine has made him calm and its not making him so sedated now like it did when he first started it. I still believe the illness effects males more severely then females. I really do not know why Closapine is rated so highly compared to other antipychotics.
Yes my son had tried 3 other antipychotic medications prior to clozapine. Also my son became unwell when he was around 14 years of age. He started self medicating using cannabis at that time. He unfortunately continued doing that till he was say 19 years old even with medication. He does not use cannabis anymore. Perhaps he damaged his brain so severely with his use over that period, that even clozapine does not seem to help much. Interesting his relative has just been diagnosed also. I live in hope that one day he will be able to function better and do more with his life.
Hi, I’m new here and have an adult son that sounds just like yours. We would love for him to move out but he does not want to sign up for disability, says it could ruin his chances of getting his own business. How did you get your son to sign up? Is there assistance for housing available? He can not hold down a job let alone stay clean. It is so stressful with him in the house. He is on meds but I would love to know if there is a place he could live. We are in Oklahoma.
