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Taking Another Look at Clozapine


#41

Clozapine is his last resort as he has been on all other psychotic drugs…


#42

It was the last resort for my son as well, after he had tried everything else…and so far he has done very well for the past almost 8 years…I wish you well.


#43

Six months have passed since my son on clozapine, My husband and I went away for two weeks, and was s much needed time away for all involved…My daughter med monitored during this time。My son did not disappoint…He looked after the three cats and dog. Took his meds everyday. We came home to a tidy house. we told him we where very proud of him for managing on his own…As long as he gets his daily meds the rest falls in place…Clozapine is slow acting drug , however when it works it works…


#44

I am so happy for you and your son, I know the feeling of seeing things go well and it’s great to witness …and the small improvements over time just keep coming, at least they have for my son and hopefully for yours as well. So glad to read your post, I wish you the best of the Holidays and New Year. :slight_smile:


#46

That was the well spoken and helpful reply I hoped for here and I am very grateful. Also I read your thread on Clozapine and found it very informative. This could certainly be a first step because that medication in particular is what she relies on the most to get through the day, but of course it’s a two edged sword in that regard.

To summarize honestly 10 min of the bottle being lost or “stolen” everything gets turned upside down fast. Convincing her she may not need it is simply out of the question. For me anyway.

Edit: I’m new here and this response was meant for another thread, but if it gives this one a boost that’s well worth it to all.


#47

I wish i could support this drug choice. (i don’t) its waaaay to risky. The constant blood tests and the side effects are hellish. Death. its not worth it. It just isn’t.

Try other options. (ask) !!

Thank You!!


#48

I understand the fears involved with this drug, I was fearful at first too, but my son has been sane for 8 years because of it. All of his blood tests for 8 years have come back normal. I know this will not be the outcome for everybody. I wish it could be. If I had not had the courage to try this drug for my son and stick with it, I feel certain that not only would he not have regained his sanity but he would not be alive. Everyone is very different and every drug has risks whether it be a psychiatric drug or a drug for diabetes or heart disease. I feel like in my case we had tried everything else and this was the last resort. I am so grateful it has worked and continues to work.


#49

I’m with you on this. Son has been on for 1 1/2 years, and it has saved his life. Gives me hope that your son has eight years under his belt. Of course we would rather them not have to be on anything mind altering but when your choices are to take this last resort, or lose your son…well, the choice is clear. I have watched my son slowly come back since going on this and I feel fortunate for that.


#50

This is awesome. I have to get him off MJ first. I think that would help a lot.
My husband smokes and it helps him but I don’t think it has the same affect


#51

My son never slowed down on MJ. He smokes constantly. But, him before clozapine and smoking and him after clozapine and smoking are two very different things. Would love to get him to stop but not much I can do. I’ve tried. I would rather him like this. He is way more peaceful, sense of humor again, and loves me and show’s it. I so wish I could have seen him with no pot before the clozapine to see how symptomatic he was. Not our path for now.


#52

Has he ever tried CBD oil? It is legal here.


#53

The doctors have never suggested it for him. Perhaps we need to push for it like other parents here.


#54

The problem is that it is an addiction, the way he uses it is part of the addiction. Was hoping the CBD oil would be an option, but unfortunately he prefers to smoke it, and can’t be swayed. For now. There have been so many changes that I am hoping that later he will be more open to it. For now, here we are. As I said, this is a much better place than the hell we were in before. Don’t get me wrong though…I am not giving up this battle…just resting until the appropriate time, and enjoying the bit of peace that we have gotten back for now. One day at a time :slight_smile: I wish you all the best Mom2


#55

Quick good news update:
My son was started on Clozapine January 2016. Had one hospitalization December 5-10 2016.
He hasn’t had any hospitalizations since then.

2015 he had 6 hospitalizations. The 3 years prior to that he was averaging 2 hospitalizations a year.


#56

I am so glad to hear the news @Vallpen that is terrific.


#57

My sad story. My beautiful son, Mark was on Clozapine for 12 years. Before that he tried different meds that did not work. While on Clozapine, completed Associate and BS degrees. He was doing great. In 2009 visited psychiatrist and complained about weight problem, being close to 270 pounds due to Clozapine. Psychiatrist convinced him to switch to Abilify. Huge mistake! He went into relapse and had to be admitted to hospital for one week, Following that, we switched him to another clinic/psychiatrist. Over four years, she over-medicated him with five different meds, and never checked for dangerous side effects. He died suddenly, while we were away on November 12, 2013. Cause of death was toxicity/heart failure from medications she prescribed at higher than recommended doses. He also had dilated cardiomyopathy. Be very careful and get other health care providers involved in the care and treatment of your loved one. DO NOT trust the psychiatrist! All they want to do is add meds, more meds, higher doses. Very dangerous. We are still mourning the loss of our beautiful son, Mark. He was the perfect patient. Never smoked, never drank, no drugs. He followed the instructions of his psychiatrist, to the letter, and died as a result.


#58

Thank you for that advice. My son and I recently selected a primary care physician for him so that we have someone else to track his physical health.


#59

It’s sad how often doctors make mistakes. Also that there are doctors who should probably not be practicing medicine.

Our family member’s current treatment team has a less is more policy with medications. They try to keep people on minimum effective dosages with only the needed prescription(s). They also require a primary care provider ROI so that ideally there won’t be a medical problem and if there is, they can work with the physician.

There is a large overlap of heart problems (congenital, genetic, and acquired) with schizophrenia. This means we all need to find doctors and ways to get our family members to the doctor when/ if possible.

I consider that the psych medications have a risk/benefit profile that benefits my family member overall. Yes, there are side effects that are not healthy. Also, my family member has attempted suicide and with medication is not constantly psychotic and does not self harm.

Our family members need the most effective medical treatments with the least side effects.

When something goes wrong in medical treatment, a doctor may be liable if they have made a preventable mistake. Overall, medical errors are now the third leading cause of death in the United States, according to Johns Hopkins: https://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors. This includes all medical fields. Anyone who requires medical care is taking a risk, not just those who require psychiatric care.

Just like there are terrible surgeons, there are great ones who save many lives. Just like there are incompetent psychiatrists, there are incredible psychiatrists. And in between are all the regular human beings who become doctors and make errors, but theirs may have far worse consequences.

For a long time I was frightened of the medications, but uncontrolled psychosis is terrifying and can be fatal.

To lose a child is the worst loss. I know this firsthand. My spouse blamed the first responders. And I understood this need to find a cause for the tragedy. I never argued because I also wished our child had lived, but I know that accidents happen. People are not always highly trained or they get tired or distracted by their own losses. Mistakes are made. Life is fragile and beautiful and beyond understanding.

Stan, you are trying to help us protect our children who are still alive. Thank you for reaching out to us in this way after your devastating loss. We need to know as much as we can.


#60

Excellent news Vallpen. Thank you for the update.


#61

That is great news! Glad you have found some peace.