Not that its an ideal solution, but perhaps your son would be interested in using CBD instead of smoking pot. At least it would be more controlled.
We have taken a similar pathway for a housing solution for my son, it really does seem to work out better if it can be managed financially. Sometimes I feel sad that it has to be this way, so it is nice to see others who have found this to be the best arrangement. It is so easy as parents to slip into feeling guilty.
There is not ONE right way to resolve our concerns and sometimes we just have to pick our battles. Living in separate quarters does not preclude having a healthy relationship! There is something to be said for a independence, although so often we (family) are the ones that carry the financial burden, when we are able.
How did you find a case worker to check on him?
My son lives independently and works but not sure he is fully med compliant.
He also abuses drugs.
As so often with this disease, there’s been a setback. My son admitted himself to a residential program this week to reset his medication management and get help with his marijuana addiction. No matter how much support we put in place for him, it wasn’t enough to prevent this relapse. He has a great, sober roommate with no MH issues. He also has a private psychiatrist, a very involved therapist and case manager. The case manager was referred to us by his therapist and is private pay. So all of this is very expensive and not sustainable long term. We were just hoping to get him well enough for him to go back to school and start to support himself. Obviously, we aren’t there yet but we haven’t given up. He is too functional to live in a group home and probably won’t qualify for disability but his cannibis use disorder is a huge problem and if he can’t beat it then the prognosis is poor. He has a lot of psychosis when he is using mj. He held a full time job for 9 months but has let his addiction take over the last 3 months. The good news is that he recognized that the mj was a problem and went willingly into treatment. Also, he is still miles better than he ever was before previous admissions. He continues to take Clozapine and wants to remain on that; however his lab results are not always consistent so a closer look is needed. He has also lost a ton of weight and is nothing but skin and bones and the dr. is looking into that as well. That is not normal for patients on Clozapine. He is 25 and the dr. says part of this is getting him through this age period as well. He still has a lot of promise so we are still pushing and not ready to consign him to a life of few options and low opportunity. We hope this round will provide the magic turnaround he so desperately needs.
Try looking under Planned Living Assistance Network” or “PLAN of” followed by your state name. They offer private pay care management and other customize able services, if there is one in your state. A psychologist may be able to offer suggestions for care managers. Or contact NAMI in your state and see if they can suggest resources.
I am so sorry to learn of your son’s relapse but what a great sign that he recognized it and sought help voluntarily. I agree with you that there is hope! Darn the MJ and the ease with which people can get it! Keep us posted…
My 24 yo son on clozapine was gaining weight and even put on metformin. Now he has low back/hip pain and is skin ajd bones. Lost 40 lbs ! Been to many drs even accused him of adderrall abuse bc he’s not sleeping well or eating but he passed drug test . Scared I’m missing something
@Sandy1234, hey Sandy, has your son changed his eating habits? Has he been trying to eat less? The back and hip pain can be caused by the weight loss. When I was young I lost 30 pounds and had all kinds of strange “bone” pains. I googled back, hip pain and weight loss - there are lots of frustrated people that have severe back and hip pain after losing weight. Some of them attribute their pain to skeletal changes from the sudden weight loss.
If the hip and back pain came first, pain might be why he is losing weight. I saw you said his drug screen was clean, did they do an overall physical exam?
Thank you. I think back trouble came first then nausea and lack of sleep. He had CT, MRI, chem screen all normal. Tried PT and flexeril with little relief. Refused any opiate bc has addiction issues. Seeing neurology in a month then rheumatology. Wonder if he has stomach ulcer on top of all this. He has been working a lot. Worried all this will cause psychiatric crisis.
Neurology and rheumatology yet to come, your doctor is being thorough. Our family members can be quite complicated medically. My son was recently referred to a gastroenterologist, I can’t help but wonder how much anxiety affects my son’s health issues.
You said he worked a lot, does his job require a good deal of physical work, could he have injured himself?
My son lost 40 lbs plus also, after initially gaining weight It has not been determined why he lost so much weight. He has been taken off Clozapine and is currently being switched to an injectable. We are not happy about this but he was not taking his meds consistently enough on his own. However, we tried to figure out what was causing the weight loss and never found an answer. His dr. works with Clozapine all the time and has been working with it since clinical trials and he is puzzled so this must be extremely rare.
Our small frame son lost weight that coincided with when he started on Clozapine…to the point we were getting concerned. However, he gained some weight back within a month or two and has been a very healthy weight ever since (16 months total on Clozapine). He is very conscious of his weight and does not want to gain. He works out at a gym and walks a lot. Clozapine makes him hungry so he takes his med just before going to bed.
This post is from July 2019. I am new to this forum. Just scrolling through. What caught my eye was he has not fully accepted his diagnosis. My son who is almost 38 has not hardly at all accepted his either. He has above average IQ & had gone to college for a bit. Social anxiety is one big obstacle. Has he always lived away from home?
@sophie53 - hello!
My son lived with his dad for a while, but when he returned to where I live, he has always lived on his own - partly by choice, and partly because it was the best arrangement for me and my husband, his step-father.
My son also is intelligent, and had just a bit of college before full onset. He has tried to return since, but never succeeded.
Within the last couple months I have seen a shift to more insight into his diagnosis and illness. My son is an interesting mix - he definitely tries to socialize, but often misses the mark in understanding social signals, understanding how to open a conversation, and how to adjust his conversation for a setting and the person he is addressing. I think people often interpret him as mentally disabled and/or on the autism spectrum.
My son also carries things with him for a long time - he is certain the is a nationwide ban from him entering a Starbucks - at one point in his illness he was told to stay out of one. And he worries about riding the bus for fear of how the bus drivers might react to him if he talks to himself - which makes me chuckle since we know bus drivers don’t pay attention to that behavior unless it is disruptive or threatening.
Welcome to our community. We support each other and gain ideas and knowledge. And sometimes just vent or cry. I am a firm believer in hope for a better future, although this illness is very challenging. The best advice I can give on lack of insight is the book “I am Not Sick; I Don’t Need Help”. A must read. I also found the book “Surviving Schizophrenia: A Family Manual” to be very helpful.
My daughter is finally back to where she is enjoying her life.She was put into one of major mental health hospital in Canada and they started her on Clozapine.She has not had no relaspe since she was put on this drug.She actually got a volunteer job in the hospital where she was in lock down.She delivers mail and what ever she was needed to do.The nurses where in Total Shock to see how well she was doing.They all clapped for her.She has always been a nurturer when she was younger.Her girlfriend also has schziophernia to and she lives with my daughter and her x a long story but there are back together.Her girlfriend was put on Clozapine to but she wouldn’t get off the pot and booze and her white blood count drop.So they had no choic ebut to take her off the drug that was really helping her.My daughter and all volunteers are now at home.Till they get some control on this new virus.My other daughter is an ICU nurse and I really worry for her at this time and my other daughter is worried for her to.I see a real change in her feelings towards her sister.I hope and pray that she has turn the corner but she always phones me to ask if I think she has turn a corner.
This is good news that your daughter is doing well on Clozapine and is volunteering! I’m sorry about her friend. Are the two of them still living together? I hope the friend is taking a different A/P medication to help her.
Please tell your ICU nurse daughter that I have today prayed for her protection and for her stamina to get through this. I thank her for her work on the front lines.
That is a low dose for clozapine. Has his doctor ever checked his blood for a therapuetic level. They csn give her lithium to raise white bloid count
You know if they give lithium it can raise the white blood count and help the schizophrenia also. My grandson wbc was dropping and this is what they did. He got off tge lithium about 6 months later and has been fine. Now on very low dose of clozapine
A quick update and an answer to the above question.
My son is still on Clozapine. Since the last update was August 2019, and it was a year, he’s been on this medication consistently for 6 years. He hasn’t had any more psychotic breaks.
His symptoms are gone except for a few mild delusions that I think he believes are absolutely real - mostly that he’s met or spoken to on the phone a few celebrities.
He only mentions it a few times a month now. I just don’t say anything and he moves on in a few minutes. Now & then he does say that no one probably believes him, etc.
No abnormal paranoia. He did have one paranoid delusion that an “axe man” was going to break into the house and kill us. I can’t remember the last time he brought that up - it took years to very slowly decrease in frequency.
I still have to remind him to bathe and put on clean clothes sometimes. And, he has to be told to clean up after himself most of the time. He’s getting slightly better about doing that in the kitchen. It would probably help if I could figure out a way to give him a lot more positive reinforcement and stop nagging - not sure how to do that when nothing happens if I don’t nag. But, I really need to do it. Maybe just praise the tiniest thing?
I don’t see any signs of him seeing or hearing anything that’s not there.
His social anxiety was the absolute worse thing. It’s still a problem, but I’d say there’s about a 25% improvement.
I think his presentation is a lot better. Not sure what else people would be interested in. Ask if you’d like to know anything - I’ll eventually see it.
His full drug regimen is 300 mg Clozapine, 30 mg Prozac, 900 mg Gabapentin each day.