Family and Caregiver Schizophrenia Discussion Forum

Taking Another Look at Clozapine

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.

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

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

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

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.

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

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.

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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.

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.

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Excellent news Vallpen. Thank you for the update.

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

Oh, I am so sorry for your loss! How horrible that he lost his life because of negligence! My heart goes out to you!

Great! Make sure all team members are involved and communicating. There are many dangerous side effects of these meds. Be especially on the alert for a psychiatrist prescribing two or more meds. It is called poly-pharmacy and very dangerous. Drug interactions have not been fully tested and can cause harm/sudden death.

Thank you for your thoughtful and kind comments. You are so correct. Unfortunately, we have to on the alert for the incompetent psychiatrists who can cause harm or worse, death. It is one thing to make a human error, but when you totally disregard warning signs on the prescribing instructions, plus FDA warnings about the dangerous side effects of meds you are prescribing is reckless and unconscionable. So please everyone out there, get a team on your side. Do not trust the psychiatrist. Include the personal care physician, nurse, pharmacist, counselor and other family members.

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Good advice. Thank you.

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Mom 2
In your email to me, you mentioned the psychiatrist did not even weigh your son. Wow! That’s bad. Be ready to take your son for a second opinion. There are university hospitals that have a psychiatric staff. See if there is one near you. For Example, go to Johns Hopkins and check out there psch care and treatment department. They offer in and out patient services for a full evaluation and recommended treatment plan. I wish I knew of this when my Mark was living…I would have taken him there instead of trusting his psychiatrist. If I only knew then what I know now.

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My son has been seeing the same psychiatrist for several years. He does not prescribe multiple APs. He thinks there is not enough evidence that it provides acceptable results.

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Good for him. He must have read the following, or something similar about poly-pharmacy.
Kevin Pho, MD, an American physician of internal medicine, and founder/editor KevinMD.com., a website visited by medical professionals states this: “Polypharmacy has never been, and will never be, systematically studied in controlled clinical trials…… It is impossibly impractical to do studies comparing multiple drug regimen, because these would require too many cells and too big a sample size to test all the possible permutations. The result: Polypharmacy is rarely ever evidence-based, almost always a shot in the dark.”

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Stan, I look at the sudden switching of these major APs as a form of polypharmacy as well, do you? Not once has his doctor said, lets titration me this med to a new one, just bam new script. I know I’m not a doctor.

Mom2
I, too am not a psychiatrist/psychologist. My Ph.D. is in education. But I do a lot of research, especially since my son died, and I have over 25 years of dealing with a flawed mental health system. Selecting meds is a crap shoot. Not evidenced based. You see the psychiatrist for 15-20 minutes. “Tell me the symptoms… Here, try this since the other med is not working:, OK let’s increase the dose level. Or, let’s also add another med.” And they try to say psychiatry is a medical science. Really? Do not trust the psychiatrist. there is much information on the internet. Unfortunately, we must take a more active role in the treatment of our loved ones. And if you have any doubts, get a second opinion. I have written elsewhere there are university hospitals which have psych departments and offer in and out-patient services and give a complete evaluation, behaviorial and physical.

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