New to this forum. My 21 yo son has SZ. He has been dealing with a host of mental health issues since at least the age of 5-ADD, ADHD, Bi-polar, anxiety. About 3 years ago he started becoming paranoid and has been spiralling worse and worse. He has had over 20 inpatient hospitalizations ranging from a couple of days to about a month. He has been on well over 30 medications over the years, now he is on depacote and quetiapine. He was just released yesterday from an involuntary inpatient facility and is still highly delusional. He was in terror in the hospital feeling that there was a serial killer there and everyone was in on it. The psychiatrist completely misdiagnosed him not even recognizing his psychosis. We had to insist that they release him because he was literally climbing the walls, in a 24 hour period he put his knee through a wall, his fist through a window, cold cocked another patient and pulled the fire alarm-all right before he went before the judge who ordered he be released to an intensive outpatient program. The medications are not effective at all on the psychosis. He combines SZ with uncontrollable rages destroying my condo-he broke a window 3 times in 6 months, every wall has multiple holes in them, there are no doors except the entrance. He starts his intensive outpatient program on Monday, but I have little faith he will be able to sustain it.
I guess I am just venting.
Welcome @caregiverd. I think you need to keep trying to find an effective psychiatrist.
Is your son medication-compliant? I’ve heard that clozapine is effective for medication-resistant schizophrenia. Not suggesting that particular drug, but I know in my son’s case olanzapine has done a world of good eliminating voices and delusions. It does have serious metabolic side effects, which he is experiencing.
He is generally compliant, just nothing works to mitigate the delusions and voices. Compound that with volatility and violence makes things scary. If we can make it to tomorrow he has is IOP intake and is seeing his dr tues. morning. Will ask about the other meds
For my son, Seroquel was about as helpful as aspirin. The only thing that has really helped was Clozapine. It took forever to find a really good psychiatrist. The breakthrough on that was after I called the heads of early psychosis programs at well-known teaching hospitals. One called me back and recommended a practice in Manhattan, which was the beginning of things looking up.
I will be sending you positive thoughts. This is a great group. I have learned so much from the people here and it has really turned my son’s life around.
Dear caregiverd,
My family had a similar experience. My son seemed to be treatment resistant and we could not get a handle on the illness, paranoia and psychosis. Most doctor’s believed he was treatment resistant and would end up in a state hospital. Life was very heartbreaking and challenging… We tried many medications including Clozapine with no results and began loosing hope.
What finally worked for us was finding a doctor that would do the medical DNA test… Ask your doctor about it.
My son’s DNA test was able to identify which medications were metabolized normal, moderate and rapid. The results showed my son was a rapid metabolizer for specific antipsychotics ie: clozapine. He was also determined to be double negative with the MTHFR gene meaning he could not absorb vitamin B.
We were able to select an effective medication from the moderate list that is also an injectable. We prefer injectable every 28 days, so he doesn’t have to manage oral meds throughout the day and there is no question of compliance. Since his medication is from the moderate list, we have a therapeutic dose test done every 6 months. For the vitamin B deficiency, we use Deplin and a prescription grade vitamin D as well.
For us, this has been an extraordinary improvement. Both positive and negative symptoms are gone! The only thing we have to watch is stress. That is his vulnerability. If he has stress, voices may return but we address them quickly by adding an anxiety medication and life resumes as normal.
My son is so well, he works 4 days a week at our business and keeps up with the other employees, no problem. He flies to visit other family members for summer and holidays which gives him a sense of inclusion. Feeds the social aspect he was lacking before.
I pray all families find a path to health and successful management for their MH crisis.
Keep talking and share your success stories. Your path may be helpful to someone else.
Regards…
Thank you for your wonderful response, can you let me know where you the DNA was tested. Thanks
This FDA link seems useful: Table of Pharmacogenetic Associations
@karegiver posted earlier that their son had the GeneSight Psychotropic test
This needs to be brought up with my son’s psychiatrist. Thanks @karegiver!
Genesight was the test my son had. His private insurance paid for it less his financial portion, $25. There is a financial worksheet he can complete. Well worth it. I believe if you have Medicare or Medicaid, Genesight states the cost is $0, per page 6 in their pamphlet. please check out their website.
Other issues to consider…My son although he is 29 years old, he is still carried on his father’s insurance. If you are a federal employee or work for a large corporation, sometimes they can remain on your insurance plan past 26. It is important to talk to your HR department and it must occur 6 months prior to their 26th birthday.
Hope this information is helpful.
Do some research on Clozapine!!!
I’ve walked in your shoes for many years. My son is 27 and his history is similar to your sons. The only catch is two years ago the hospital talked us into sending him to assisted care housing in the city close to our suburban house. Worst mistake of ours and his life. At the housing there, (DEPAUL) another client there introduced our son to crack cocaine. 
Well in 2018 and part of 2019 he was MHA 11 times spending g over a total of 100 days in the psych ward. The last time they let him out and sent him to DePaul
Housing he started using crack. Lol, since then he has only been hospitalized 3 times, and that three times was when he was in rehab trying to
Get off crack. I am sorry what you’re going through and you’re not alone. 
Well the weekend was a whirlwind, he came home on friday, didnt sleep friday or saturday night (after no sleep for 2 or 3 nights previously. totaled his car saturday night, finally got to sleep sunday night. Last night he was in serious pyschosis, seemed to be disassociating. Case manager came by and determined he needed to be rehospitalized-this was same group that discharged him friday. After several hours got him safely to ER. He seems calm and more rational in hospital today. need to see if we can get him a bed in an inpatient facility and see if we can find him a long term residential treatment facility, though this is tough with his history of violence.
Look into clozapine it’s a good med for treatment resistant psychosis. It worked great for my son fir 5 years til he went off it randomly bc he thinks he has chemical damage from mefs
I am so sorry for what you and your son and family are going through. Have they tried Clozapine? My son is 21 and first episode psychotic since July 2nd with a suicide attempt. We pushed to try Clozapine. He’s been on it for about 3-weeks and we started noticing positive results after about a week.
Do you have a support group? NAMI.org can help. You are not alone 
Our son tried several antipsychotics over a year and nothing was helping. It was so devastating seeing him go through that hell. Seroquel (brand name) they put your son on was completely ineffective. A psychiatrist in Utah put him on clozipine and within a few weeks he was better and within a couple of months he was much better. He is very easy to live with again. It’s not perfect but we feel we have much of our son back. He has had set backs, he’s not able to work, and the blood draws required are a pain but it has been worth it. Don’t give up. My thoughts and prayers are with your son and the family. Keep us informed on how he’s doing. 
This is very hopeful to hear. Glad your son is doing so well
Don’t lose faith. Your son sounds exactly like my son did ten years ago. He’s 32 now. Although my son had bipolar then Schizoaffective we didn’t know he was doing drugs and blamed everything on the schizoaffective disorder. Once we found out about the drug use which greatly exacerbated the mental illness and got him clean then we were able to deal with the MI. He was still treatment resistant but no violent behavior as before. More years of trying every drug until he finally went on clozaril which works mostly. He recently gave up nicotine and that’s made a huge difference and he’s much better. Not perfect but greatly improved. So there’s hope but it’s like peeling an onion - one layer at a time. Best wishes to you and your son!
Yay for a story of hope! Where do you have such test done?
Thank you for sharing your experience and as a
possibility for some of us to look into.