Hello, this is such a great source of information! Thank you
My question is: Have any or is it possible to manage scitzoeffective disorder without meds? I have a 22 year old son just diagnosed in Sept. He went off his meds because he gained so much weight and was still hearing his “voice”…he has always struggled with his weight and worked out so this was a no no for him.
Also, he made a terrible decision to start to date my fiances 42 year old ex wife! We are all disgusted by this decision on both ends and he doesnt care! Told me to mind my own business! 
Could this be his disease or just a kid who has always been able to do what he wants with no consequences (hence, my ex raising him and the biggest reason I think his disease came out…stress!).
I have removed him from my life until that nonsense ends and has some remorse and apologizes to everyone involved. Thanks for your time!!
Well to be honest, it takes two to tangle…so assuming the ex-wife is dating him by her own consent, then who is anyone to judge? However, I want to get back to medication. I used to take Olanzepine which causes dramatic weight gains. I managed to lose weight by only eating 1400 calories a day. Since you say he has struggled with his weight, I can only assume he is always used to eating too many calories. Eat more vegetables and healthy fats and protein and he will be full and healthy. Get him back on medication and he will recover.
It is so disappointing when they still have breakthrough symptoms on meds.
Without meds is not the way to go. I speak from the experience of having a son that is unmedicated for his scz.
Meds help with symptoms, but don’t cure the disease, from what I think. I’d say it depends on how bad the symptoms are. Can he work?
After our son was first diagnosed with SZ, hospitalized three times almost back to back, and then stopped taking meds after three months, he actually acted fairly normal. We let him return to his apartment at college and he had some normal things lined up. We didn’t really understand the illness at that time and we had to give him the benefit of the doubt. But his wellness didn’t last. It was just a matter of time until he was hospitalized again. Repeat. Repeat.
SZ (or SZA) is not a diagnosis most people readily embrace. On top of that, @ 50% of people with SZ have a condition called anosognosia that make the person unable to recognize self as being sick or needing help. The side effects of many meds don’t help. SZA is typically even more challenging to manage. These are illnesses that do not have a cure, and managing them is not solved in a few months, if ever. However, there IS hope! I recommend learning all you can about the illness and utilize the free information and support from NAMI (National Alliance on Mental Illness… Home | NAMI: National Alliance on Mental Illness).
I think terrible decisions go along with schizophrenia. In my opinion, if he doesn’t have any positive interaction with you, she will likely become the greatest person of influence in his life. I would keep those communication lines open for when you-know-what hits the fan. Not many people can carry on love relationships with those who are unmedicated. I’m curious of her true intentions. Good luck!
Would it be possible to try a different medication with less weight gain side effects? I have seen another thread on here about medication alternatives like supplements, but as others have said, individuals with psychotic disorders need medication as part of the treatment plan in majority of situations.
If you need to cut off your son for your own mental health, then you do what you need to do. But I think if you are expecting him to “return to his senses” and apologize, it might not be the best idea. I don’t know your son or his symptoms, of course, but he might not have the capability to recognize his wrongdoing when he is unmedicated so it would be unfair to penalize him. I think maintaining your social connection with him will be invaluable as he navigates next steps in his treatment.
Thank you everyone for your feedback. After I last wrote my son went out drinking, I think he drank so much that my younger kids has to go and get him from the outside of the bar in the back pants down and having an episode. The words he uses are “hes done” cant take it, he starts saying mean things… I was not there, he was facetiming a girl and added my other son in thankfully! They were visiting grandparents (fathers parents) in another state. My poor daughter said it was horrible!!!
He REFUSES to go on meds. I still have not spoken to him from the other poor decision he made. Ugh
What about this disease makes them make terrible decisions?? Is it their addictive personalities? Age and still immature?
Oh and to add to it, He is addicted to his phone and just lost another job.
I always felt like he has always been this way growing up…so how could this be part of the disease??
Looking forward to everyones feedback. Thanks so much!!!
@Fauciface3 I’ve been reading I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment. The book introduces a technique called LEAP (Listen-Empathize-Agree-Partner). It sounds right, but no doubt takes a lot of practice and patience to get right. I don’t know what other choice there is. Involuntary commitment doesn’t solve anything long-term.
@hope How long has your son been unmedicated? My son with schizoaffective disorder just announced he’s stopped taking Seroquel, 300 mg, against his doctor’s advice. He’d been on it for many years. He probably secretly stopped some time ago, and that may have been what caused him to be hospitalized 3 weeks ago when someone called 911 because he was in front of their house looking and acting mentally ill. He’s still taking 900 mg. of lithium.
I guess only time will tell if he’s successful – i.e. staying out of the hospital and doing things that would make him more independent. Who knows, maybe his brain will adapt and he will will start functioning better. Unfortunately, the odds are against it. 
Hi @caregiver1 My son has always been unmedictated. He has anosognosia, the scz was gradual onset and features paranoia. My son confabulates the hostile voices to be whatever person is closer to him, even if they are quite far away. It seems as though he struggled more in his early 30’s. The psychiatrist who diagnosed him was good about suggesting things that would help him without fighting him about whether or not he was mentally ill. As a result, he did work with a therapist trained in CBT when he wanted to be able to grocery shop for himself again. (He believed I had started poisoning him through his groceries) He had stopped shopping a couple of years earlier because he thought everyone in the store was yelling at him and calling him names.
My son is pretty high functioning unmedicated, supposedly its not unusual for someone with highly paranoid features of scz to have more function. He can only work a couple of hours at a time and it has to always be with different people. Otherwise he becomes paranoid, he was deemed dangerous by his last full-time employer. He has purchased guns to protect himself once the delusions get going. I think its possible that gradual onset helped him be more functioning in day to day life. He had already lived on his own for several years before the psychosis increased to constant and disabled him.
We have not had the good luck to have him hospitalized for scz. He can pretty much pass himself off as someone needing a bit of assistance in day to day living for a short time. I’ve noticed that RNs will notice his behavior as not age appropriate - he hates it when they ask “Do you live with Mom?” When he has really bad days, he stays home.
My son does live in an area that has a lot of young artists and students - I think this helps keep him from standing out as much as he would in other places.
Like you, I am waiting for the passing of time and hoping it will bring better things.
@hope4us @hope Some people think that anosognosia is the major problem with SZ/SZA. If you don’t think you have a problem then why look to change anything? For LEAP to work you have to find a problem that everyone can agree on – like staying out of the hospital, or whatever might motivate the family member.
I agree, anosognosia is the major problem, its the reason for the homeless issue for people with scz, its the reason families kick their family members out of their homes.
LEAP is still how I deal with my son in every interaction. We used it to initially get him diagnosed - using a motivation, the diagnosis lead to ssdi, ssi, Medicare, Medicaid and SNAP. When he began to have issues living at home, he was able to find an apartment - if only he could get a section 8 apartment somewhere where he felt safe. He has to pick the apartment each time he moves. He is suspicious of any suggestion we make about housing.
Like many do before they know better, I originally tried to tell my son that the voices he was hearing weren’t real. What really amazes me is a person from my Family to Family class still begs with her son to go to a doctor because he is sick. She has read all of the literature and just keeps up the same useless nonsense.
Hello everyone! Thank you for all your feedback!
To answer some of the questions…yes he can work, he is high functioning I gather from some of your input. He is social, takes care of himself, his car and now I just saw on social media has a girlfriend. 
Has anyone ever heard of getting a brain scan? My son did…the dr told him and my ex husband that it wasn’t scitzofrenia…once he told him that he stopped his meds…he told him that basically the front and back of his brain is not commected and that he can have therapy to try to gain back brain function…i looked up this specific dr and his reviews were horrible! So I told him I would not pay for him to go back. I do however want to see if this is something I should pursue? Has anyone ever heard of this???
My son had a second DWI a few months back…i am petrified of something bad happening! He goes out with his dad all the time…they are both very social 
Sometimes I feel like hes a kid that has never had bounderies and thats why he makes poor choices and then sometimes I think it’s scitzofrenia. He hears “a voice”…not voices mom. The only time he freaks out is if he gets drunk…but mainly a drunken episode and I think hes behaved like that since his teens.
He lives with my ex in our marital home so I have not seen it, just heard.
He says he feels much better off the meds…I dont know what that means, I think energy wise. I just don’t know what to do…I have not spoken to him since he started looking for attention and gettibg it (shes 42) from my fiances ex wife!!! I am pretty sure he doesnt care or has any remorse of what he has done…I am so mad at him for crossing bounderies like that.
I just received this message about a workshop about post-psychiatric-drug withdrawal. It’s a workshop sponsored by Mad In America.
The workshop is: Psychiatric Drugs Post Withdrawal
It’s free unless you want to donate something.
I’ll probably attend it to see what the problems are, aside from what I’m already afraid of – i.e. doing something crazy that gets my son back in the hospital! And, really, more importantly, failure to get better – i.e. get a job, live independently and find a supportive partner.
Medicated or not, camouflage can be helpful. If you are treated with a measure of respect and tolerance, you tend to respond in kind. The unmedicated part of my recovery was no doubt aided by being a student, and working in the “nerd culture” of science and technology.
Later in recovery, I joined a community of creatives in art, music, theatre and dance. Acting is a transient advocation, and a certain degree of flightiness, unreliability, insecurity and melodrama is baked-in. In many ways I looked more stable and less odd by surrounding myself with such characters.
I settled into a somewhat eccentric “guru/wizard” role at work. I didn’t so much cultivate it, as it happened organically and it served my purposes. I only pushed back when they called me a “genius”. I choose to think of myself as a flawed, but creative thinker who blunders his way out of problems by thinking of things a bit differently. I think I could have found a path to recovery without drugs, since talk therapy got me part of the way, but the newer drugs are far less onerous than those of old, and near relapses off medication led me to consider medication as cheap insurance.
It never hurts to be informed. Please let us know what you think about the workshop if you do decide to attend! Although my personal opinion is that there are few persons with SZ who can manage well without some medication. But talk therapy is better than nothing at all, and it certainly could be an additional help to those who are on medication.
A brain can rule out other medical factors but I’m not sure what this doctor is referring to.
Your feelings are understandable. Does your ex help with your son’s care?
Regardless of his diagnosis, I second the recommendation to read the book “I Am Not Sick; I Don’t Need Help”. It teaches how to build a trusting relationship and use psychology to get someone else to do what YOU want for reasons that HE wants.