I wept when I read your comments. My husband and I have been living this nightmare with our now 21 year old beautiful son. He went to college at 18 on a full academic ride. Extremely intelligent and athletically gifted. We had no idea he had been smoking weed and using hallucinogenic drugs for the previous 6 months. At the end of his first semester he didn’t come home for Christmas break but called me and said he was lost. He couldn’t find his way home. He had taken 90 mg of Vyvance to study for a final and had smoked pot every single day for weeks with some cocaine thrown in with his fraternity brothers. Completely wreck less. Looking back I believe he had already had signs of psychosis and used poor judgement because of it. We had him put into a psych unit and they put him on 20 mg of Olanzapine. He was a zombie. We reduced it after 3 months ourselves and he began to come back to us. We took him to a psychiatrist who was a quack. Eventually we took him completely off of all meds to see how he would do. He went into remission of all symptoms for over a year. He returned to school and work but gradually started smoking pot again. Guess what? His symptoms came back. We got him a counselor and he went back on 10 mg of Olanzapine and within 4 weeks he wanted to work again. He had been out of school the previous semester. But he went back to work and held down a job until just 2 months ago. He began smoking wax form of THC and couldn’t live on his own. We had to go get him because his behavior was clearly confused and psychotic. He had to quit his beloved job. He had been taking just one course in a junior college this last semester. My husband, myself and my 75 year old mom took turns driving him to school and my husband even sat in the back of his class room. He managed to pass his exams and came out with an A. But it was stressful for all of us and him. Right now he’s back home with us. We’ve all used vacation time, called in sick and had my mom come stay for weeks at a time. He’s now on 5 mg of Abylify and it’s helping. He’s having more aggression and impulsive actions. He calls me filthy names, has thrown things at me and punched me in the arm and has broken doors, lamps, and many of our things. He is delusional and believes we think we are superior to him. Yesterday he kicked his 20 year old sister who was home from college. We have another daughter in graduate school who is married and a son who is an Engineer and married out of college. We feel like our other 3 children are grieving the loss of their beloved brother. I plan to help them all receive some counseling to better understand what has happened. As yet, my son still has no diagnosis. We have believed this was psychosis from extreme use of THC at a young age as there are many studies that correlate the causation. I am confused about Schizophrenia and the process of the disease. I am worried that my son has it and is in the developing years of the disease. We live in an area of the U S that has no good treatment centers and no early psychosis intervention units. I know he will need a diagnosis to get disability and benefits later. For now he is still on our health insurance. To this point we have been able to take time from work or work from home to keep him out of inpatient treatment. I am not sure if that has been the right choice or the wrong choice. I’ve read that supportive caregiving is the key for best recovery. But it is taking a toll on our marriage and our health too.
I want to start a local support group for individuals with this illness and for their loved ones. If you live in the U S A call your senators and governors and local leaders and demand research and services for our children and loved ones with this debilitating illness. We have so much for other diseases like breast cancer but nothing for the individuals living with and bravely battling Schizophrenia. We need to fight for them!
@swillis I was an active over achiever too before sz brought me down. Medication is the only solution for sz. The ability to handle stress goes way down when you get sz, I know. I used to work 16 hour days, ran a team of 13 people across 3 continents and when I got sz I had to stop working.
Stress is what causes violence because sz suffers are under another kind of stress all day. I think if your sensitive to stress it will help. Routine can help too
@Moonwalker thank you for your insight. We have seen that stress affects how well he is doing. Once the medication has become effective my son usually wants to return full force to work, school and living on his own. He has now made 3 attempts and each time he uses pot again. We are trying to get him to remain at home, stay on medications, maybe take 2 classes a semester and online, and find some activities he enjoys.
I will spare the details but by the time my son turned 25 and had hospitalizations in the double digits, I thought we would never get him back. As a last resort he has been living in a group home on the campus of the mental hospital, attending a schizophrenia rehab program 3 days a week and prescribed clozaril among other things. It has been a game changer. I have my son back! Not 100% but sooo much better. There is hope.
My heart goes out to you Dino. Like many on this thread, I’ve been there too with my son in very similar circumstances and behavior. My son was diagnosed in 2013 at age 20; a college athlete at the time. His symptoms were similar to your son in the beginning. He was in and out of psych care in California for years, over medicated and periodically missing and homeless. I tried board and care with wrap services, home care, independent living near home until he had an accident while psychotic that led to near death and long term hospitalization. I’ve moved my son to a residential care home specifically for Schizophrenics in Southern California. He started Clozapine 9 months ago- huge improvement and the daily therapy, psychiatry and scheduled routine have helped him tremendously. I could never provide this type of care working full time. He’s safe, content and presents better than I’ve seen him since his diagnosis 6 years ago. I highly recommend residential care. There is hope. Your son is newly diagnosed and it takes time to figure out what medicine combinations work best and those change. Once figured out, you will start to see your son’s personality return. Give it time and take care of yourself. I went through trauma and acceptance therapy for a year- it helped me cope with this new reality and accept this illness.
Where do you live in U.S.? Do you have a NAMI affiliate?
We live in Arkansas and there just isn’t much here. We are about 2 hours from Tulsa. I just found an amazing website called Strong 365! They have resources and information like I’ve never seen before. There is an early psychosis intervention program in Tulsa and we are calling today.
Hello , thanks for sharing your story, apparently clozapine is the gold standard medication in the uk , with my son there is great improvement with it , however he has so many negative side effects with it he hasn’t got on a therapeutic dose , every time it is increased he has so many physical side effects in the last two months he has had two episodes of seizures which has lead to him now being prescribed anti seizure medication , my son is 20 diagnosed schizophrenia and bi polar and has been detained coming up for two years next month , he has also has 22 episodes of ECT , with no good outcome , there are great outcomes from clozapine, but as I said lots of physical negatives , good luck going forward x
Firstly thank you for all of your responses and so sorry have not replied or done replies on an individual basis yet. But its been a very difficult week. I am away from my son right, he lives in Denmark me in the UK.
His mood and overall well being seems to be getting worse. They have upped his meds from 4 to 5mg of Risperidone. He was trying to do exams but failed them or did not attend. Hi care worker said its his link to normality. But worse than that is he is not engaging with his team on any level and now they are saying the Commune (council) who pay for his hospital are saying they will make him leave. I am so angry right now! Denmark you pay very high taxes as its a well fare state. But seems they are saying if he wont accept help then they will let him go.
My argument is he wont engage because he is sick! with severe negative symptoms of the SZ. He met his mother today for lunch with his Grandma , he is totally anxious shaking, its terrible and im not there until next week. I really am struggling to cope with this right now but need to be strong.
Sorry for the long post and that im giving nothing to this forum at the moment, my head is all over the place with this right now. This is just me venting. I do not know what the future holds or where this all leads. 
… thank you Dino
It is heartbreaking when the very system set up to help refuses to do so saying they are “non compliant”. I share your frustration and anger. They want to treat it as they would a non compliant diabetic–take control of your illness and treatment or else!! That works with someone who has sound judgement. When are LOs are at their worse they lose the power of reason and isolation is so common. And they do not improve with ultimatums --at least I have not seen in work in our case. SMH at the medical community in his area.
Do not worry about venting or not contributing. This forum is for us on our good days and our lost days. You are not alone and you have the support of people who are frustrated right along with you. Hope that helps.
Hello its been another very very difficult few days with my son who was diagnosed with SZ last November. He is on now 5mg of Risperidone up from 4mg. His anxiety has shot through the roof. His Dr says it is the side effect of the meds. He says not, he says he has had this for years. They wont prescribe any further anxiety meds at the moment aside from low dose of Oxaprax.
Its heartbreaking to see him in pain in this way. I am trying to get him to relocate to the UK with me so I can have him to take care of him.
My heart goes out to you all here who are facing your own battles which I can see for many has and is a tough road by what im reading here. Thank you all for your support. I am sorry I have so little to give back yet.
Im so tired of this right now. I talked him down somewhat.
Is severe anxiety something anyone else sees in a person on Risperidone ? …
I’m sorry about the trouble you are having with your son. Would he be willing to try another med besides riseperdone ? BTW a one mg dose increase makes very little difference.
Would it be possible to switch doctors? You need someone who will work with you to eliminate disabling side effects.
Hi Jan I think he would be willing to try anything right now. And I get a real sense his current medical team over in Denmark are loosing patience with him. Talk of releasing him and so on. They have been good but im starting to see failings in the system. Im flying back out there Thursday and am talking and trying to get him to come to the UK to live with me. But its a battle to get him to agree. But I know getting him here I could really be there for him and I know the health care system here much more than Denmark.
And yes I need someone to work with this and the disabling side effects which I dont feel they are doing now. Thank you for your reply
I hope you can get him to come back with you, too. Continue to advocate for him; some psychiatrists hold onto old ideas that you can’t prescribe an anti-anxiety med or antidepressants with an AP. Sometimes both are needed.
Good luck!
Yes Jan I was trying to search if it was safe for him to take propranalol with Risperdone and to see what the interactions would be … but its confusing as get very mixed information.
@swillis I really feel for you … and know some of the stresses your facing. And yes if you can get support for yourself and others this can really help. So right we need to fight for those suffering with this terrible disease. Im not in the USA but the problems and challenges I am sure are so so similar .
You could suggest buspar. Studies Tm have shown that it decreases negative symptoms after 6 weeks of use
Swillis - I read your post and wanted to comment. I have two sons, one is 21, the other 19. Both have smoked pot since an early age, like probably 14, unbeknowst to me. The 21 is fine and does not have any mental health issues. My 19 year old has early onset schziophrenia. He started hearing voices around age 7 1/2. So, whether the pot had something to do with his mental illness, not sure, but he wasn’t smoking it at age 7 1/2. My son has been violent in the past and I feel it was largely due to the ADHD medication he was on at the time - Adderall - and was told so by the head of the pscyhiatric department where he went in patient at the time. The doctor promptly removed him from it; Adderall is like legal meth. Terrible drug. Some may disagree with me and that’s your right, but for my son, it made him violent. He attacked his dad and me, then proceeded to cut himself to ribbons, trying to commit suicide. He will always have scars on his arms and legs from that terrible day in July 2017. Anyhow, the good news is he is on a better mix of meds these days, no longer violent. The bad news, my son was always extremely intelligent, had A/P classes in school, wanted to be a doctor some day. Those dreams have evaporated because of his illness. He is almost a hermit, rarely socializes. Most of his so-called friends have turned their backs on him because they don’t understand or care to understand his illness. This illness is the most heartbreaking of all mental illnesses. It robs the individual of their dreams and for the most part, their life. My son has horrible hygiene. I have to beg him to shower. He rarely shaves. He wears the same clothes for 3 - 4 days. He wasn’t like this until his illness progressed. It is completely stressful for the family members who are caretakers. I had to call in last Friday because he was suicidal and agressive. By the grace of God, I have understanding bosses who give me lee way. Thankfully. He has tried to commit suicide 4 or 5 times now. So I totally understand what you’re going through. It does put a strain on a marriage and your other kids and your entire life. I feel for you. Sending you hugs today and prayers that your son will improve.
There is a lot of good advice in this post. Don’t rule out Clozapine. It has helped our son who experienced multiple bouts of catatonia and 10+ hospitalizations in 2.5 years. Now hospital-free and living independently with some oversight (no job yet), for 11 months! NCBI is a great resource for medical information. Here is a link to an article stating that Clozapine helps with negative, as well as with positive, symptoms of SZ. Clozapine: Improvement of Negative Symptoms of Schizophrenia - PMC
Thank you for the link LisaS very informative !!!
and thank you to everyone else who responded to my post. I am so sorry I have had not time to respond. It has been … a difficult month