Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman (Ep. 18)

In this episode, we talk meds with an MD. Specifically: Clozapine. Many of us are told that it’s the “last resort” medication, “when nothing else works”. Is that really true?

Guest :  Robert S Laitman, MD, is an internal medicine physician at Bronx Westchester Medical Group in New York. Over the last 10 years, he has developed a practice taking care of people with psychotic disorders after his son, Daniel, received a diagnosis of schizophrenia in 2006.

Dr Laitman, his family, and his colleague authored the book, "Clozapine: Meaningful Recovery from Schizophrenia."

We talk about:

1.       Why do you say clozapine should be the drug used first? Why isn’t it? 

2.       Why is clozapine used more in other countries compared to the United States? Why isn’t it marketed more here? 

3.       Why does clozapine take so long to fully kick in (a year in some cases) compared to other antipsychotics? Your son continues to improve, even after being on it for 9 years. In what ways does he improve?  

4.    How does clozapine can benefit patients, besides addressing the classic symptoms of schizophrenia, e.g., suicidality, illicit drug use, smoking. 

5.       Mitigating predictable side effects - e.g., weight gain, salivation, sedation.  (Med therapy management and how it works) 

6.      We need Engagement, Access, Treatment, Support 

7. What can families do, to advocate for their loved ones to get best treatment? What should practitioners know, and do?  What can families do? Educate yourself about clozapine and talk with your loved one’s psychiatrist. 

Links and explanations:

TeamDanielRunningForRecovery.org

Clozapine facebook page

Team Daniel facebook page

SZ 3 Moms Facebook page

Get on the mailing list:

rslaitman@aol.com

Dr. Laitman’s Book:

https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X

New finger-prick Point-of-service test

Psychiatrists were once referred to as Alienists - Psych. Today article

Deborah Levy was director of the Psychology Research Laboratory at McLean Hospital and an associate professor of psychology in the Department of Psychiatry at Harvard Medical School,

Transcript

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SPEAKER_02 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide, West Coast Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. This is episode 18. And welcome. We're so glad to have you here. Tonight we're going to talk about a medication you have heard us, well, more than just the medication, actually, but you have heard us talk about closerl or closopene a great deal as one of the most successful medical treatments for our sons. And Mimi has been saying from the very beginning, Dr. Leitman says, Dr. Leitman says, Dr. Leitman says, so we're so excited that he's going to be joining us today. So Mimi, since you brought him in and you know him really, really well, would you do the honors of introducing Dr. Leitman and we'll we'll get things started?

SPEAKER_03 0:58

I'll be thrilled with it. Uh thrilled to do that. I'll keep it short because he's got more important things to say than my gushing over him. But he really is what every doctor should be. You know, this is the guy that we've all been looking for. And um he he's actually a nephrologist. And when his done was diagnosed with schizophrenia at 16, they basically told him, this is it, there's nothing we, you know, there's not any recovery from this. And um, this is how he's going to be, and these will be the limitations of his life. And Dr. Layton, or Rob, as we call him, um he refused to accept that. And he basically ended up rediscovering this drug, Clozapine, that had fallen out of use. And I'll let him explain all of that, and basically saving lives left and right all the time. And I found him about a year ago through a couple other moms with sons who said, Well, you gotta talk to Rob Layton. And called him up on a Sunday afternoon when he was at a barbecue next door, and he answered the phone and called me back and talked to me for an hour that night and took Nick as a patient and basically returned my son to me. Um, which has not been the way that he is now since he got sick. He's back with us. And um, Rob does a lot of creative thinking and creative chemistry and advocating, and we need an army of Robs, but luckily we have at least him, and here he is tonight. So I'm gonna just be quiet and let him talk.

SPEAKER_02 2:44

All right. So um, and here he is.

SPEAKER_01 2:48

I will meme me, and that was way uh way too much, way over the top. But I'm used to Mimi. So yeah, this has been our year together.

SPEAKER_02 2:59

Um well, you know, you had me at he answered the phone on a Sunday. So there you go.

SPEAKER_01 3:04

I yeah, people get really shocked at that, but you know, I've my wife and I, and you know, give me all the credit, but it's really uh my wife is Dr. Ann Mandel and I really did this together, and we both didn't accept what was considered the status quo. And you know, we we got lucky in so many ways. Um, you know, we were very fortunate that you know we we ran into some brilliant people and the late Deborah Levy, who uh ran the Harvard uh research lab, uh, the first words out of her mouth when she heard about our son Daniel was clospine. Why isn't he on closapine? So we really didn't rediscover the drug, but you know, uh we were certainly uh pushed in that direction. And then we we kind of took the ball and ran with it because we found uh yes, you know, it was underutilized. Yes, a lot of people are afraid of it, and yes, it has tremendous side effects, but boy, does it work so much better than anything else.

SPEAKER_02 4:14

We always say we are not doctors, but you are, so that's a really good thing. And I will, I don't know how much you know about us. I know certainly you know Mimi. I will briefly tell you that my son, who I call Ben, uh in in my experience, and he's 39 now, so I don't know how old your son is, about 30, 30. So what I always heard was clazapine, oh yeah, that's the last thing we'll try. That's the last thing. Let's go through all the other things. And and again, we're not talking, this is we're not prescribing for our listeners, we're not prescribing for your children. You have to go through your doctor. But I know, Rob, that you wrote a book with other colleagues, Clozepine, Meaningful Recovery from Schizophrenia, and maybe talking about it as there it is, the first thing to try rather than the last thing to try.

SPEAKER_01 5:04

When you do medicine, when you take care of someone, first you always have to get to know who that person is, but then you always assess what I can do to improve that person's life, what are the benefits that I can, you know, give this person? How can I take care of them the very best? And what are the risks involved in that caring? And depending on how sick they are, you have to decide on taking certain risks. You know, I grew up as Miriam said in the in the field of nephrology, and I grew up with the the sickest of the sick, I would take care of the lupus patients. And one thing I learned when you had very serious illness, you had to be aggressive. Otherwise, you were just really uh you're you're you're giving up to the disease and you're not letting them live their life. Schizophrenia, psychotic spectrum disorders are the same thing. They are severe in left to their own devices, neurodegenerative illnesses left to their own devices, associated with a very early mortality. Um, right now, the average lifespan, as most of you are aware, is anywhere from 15 to 25 years less than the general population. And we were told Daniel's life was basically over because he started very young, he had catatonia, and he had neurodevelopmental stuff leading up to that. So he had all the poor prognostic factors. Well, over the years, we've learned a lot what these psychosis spectrum illnesses are. And we know that they're polygenetic, they're very complicated, they're very heterogeneous, but there are certain genes that are incredibly prevalent in these populations. If you go back and they've done this in the gene-wide analysis study, and there's this one gene called that basically, if you're going to look at what's called a Manhattan plot, so you look at uh genes and risk for schizophrenia, you'll see this one gene that looks like the biggest skyscraper of all, and it's called the complement uh C4A gene, and it overexpresses that gene. And what happens in the brain is normal neurodevelopment, you have a big fuzzy brain at age 12 or 13, that's as big as your brain gets, and then it starts to prune down kind of like a bush that's overgrown, and you want it to make it look pretty. Well, people that have this one gene get extensive overpruning, and there's only one drug that's been shown, again, in experimental studies. We're not in humans now, but in rats. So this is this is experimental, but there's very good evidence for this, and it's accruing now in you know subhuman species and in you know in humans in autopsy studies, that clozapine can slow that process down, that over-pruning. It blocks the overstimulation of the brain's immune cells called the microglia. So, bottom line is the earlier you use this drug, you can actually change the trajectory of a considerable number of these people's illnesses. The that gene is responsible for a quarter of all psychotic illnesses, you know, as well.

SPEAKER_02 8:30

So, why why isn't it the you know, I think we know because we all study why isn't it the first one used?

SPEAKER_01 8:37

Well, let me keep going to support why it should be first, also, okay so we know that in the first year of psychosis, the mortality rate is 50 times that the general population, and a lot of that is suicide, drugs, and accidents. And what drug is the only drug that's out there that significantly has the FDA indication for suicide prevention. It's not used, so we're losing three to five percent of our population in the first year because they're gone, because no one uses clospine in the first year. So, why isn't it being used? Those are the the two most compelling reasons. One, it keeps your kid alive, two, it potentially can abort the process, and and uh three, if I want to keep going on, another really important gene that uh Robert Freeman always talks about is the nicotinic receptors, the ability to be able to concentrate and focus on something. A lot of these kids will have a tremendous difficulties, you know, sorting through external stimuli. So, if for instance, many years my son could not sit at the dining room table and engage in conversation, and that's part of what we call gating, the ability to get rid of extraneous circumstances and information and focus. Clozapine uniquely works on that gene set too, on the nicotine receptors. And you want to start that early because if you keep limiting, you keep letting all this sensory stimulation get in, what happens with that? You get more dopamine dysregulation, you get more stress, and that also cascades the psychosis, and it's worse around the prodrome early in the illness. That's when you have the most to gain. So those are the three big compelling reasons why you want to use it early. Um, there's more, but we'll we'll stop there for now. Why isn't it used early? Well, a lot of the reasons is, and this is kind of sad because the United States leads the world in its lack of use, is we are slaves to the pharmaceutical industry. There is absolutely no money in closapine. And if you're going to use clos soap, no one's gonna promote it, and everyone's gonna say, Why are you gonna use this difficult drug? People are afraid of it. It's been mandatory blood monitoring uh because of a uh a cohort of six Finnish women that uh were affected by something called agranulocytosis, which is a very low white count, a severe neutropenia, a white count of less than 500, and they in fact uh died. This is in Finland, 1975. Nothing like that has ever happened again, but the FDA took it off the market and it only came back to the market back in 1990 after it was apparent that this drug did indeed work better than any other drug, especially in the group of people that were not getting any benefits from what at the time was only the first generation antipsychotics. What happened in Finland? We reviewed this. These people were on a whole other series of other medications that can also cause the severe neutropenia, and the clozapine really wasn't the drug at fault. Not that it doesn't happen, it does happen. It's three in 1,000, but most psychiatrists are unaware of this information, no one talks about it. You know, we we why? Because it's a hard drug to do right, it's a lot of work, no one pays for it. And if you're gonna do clospine correctly, it's not about the neutrophil count and doing the white count. That's become very easy because now there's a point of service care, which most again, psychiatrists are entirely unaware of. It only came out in the last year. So I don't blame them terribly for that. So you don't even need the blood work anymore to get the closopene. So the deal is the first 26 weeks before this year, before this point of service finger stick device was approved, you had to go get blood work. And people weren't willing to do it. And most psychiatrists unfortunately don't know their patients that well, don't know their families that well, and just thought it was horribly inconvenient, and also are not convinced that the drug is that much better than the others. And that's that's because they don't have the experience, they're not taught it in med school, they're taught all these other drugs are much easier to use. They're all told that the metabolic side effects of clospine are so horrible that they're going to shorten people's lives. Well, we have studies that have come out of Finland, the FIN11 and the FIN20 studies. So, first one, FIN11, came out in 2011, FIN20 in 2020. But it's an 11-year and 20-year experience where they looked at the entire uh group of people with psychotic spectrum disorders, schizophrenia, bipolar, anyone who's on antipsychotics. And what they found, and and people not on antipsychotics, just with a diagnosis, they found the people that did the worst were on no antipsychotics. The people that did the next best were on the injectables. All the orals underperformed the injectables, but the people that did the best, that had the best survival, best psychosocial rehabilitation were on clozpine. They lived longer despite the metabolic complications. Now, psychiatrists are used to be called alienist. They were really looked down upon by the medical community because they wouldn't do medicine. And that still, unfortunately, is a problem. If you're going to use clozepine correctly, you have to do medicine because the reality is, along with the lanzepine, it does have the worst metabolic side effects. That said, if you're a doctor and you pay attention, you can mitigate pretty much all the side effects, but you have to be clever and you have to be willing to do medicine. So doesn't pay, it's more work, you have to get blood work. People are afraid of it because they don't realize that the actual risk of dying from agranulus cytosis is about one in 10,000 individuals. Actually, 0.3% of people will develop the very low white count. But of those 0.3, 0.3, excuse me, percent, so three in a thousand, only five in a thousand have historically in the worst, in the worst uh case scenarios been shown to die. In you know, very in a variety of uh before we got what's called the National REMS closapine site, we would have regional sites in Texas, the the incidence of death was zero. Um I've still am waiting, and I just looked over, and we have had uh 202 active patients. We're still waiting for our first um true a grand. And that's and I've been asked to challenge two people that already developed a grand, documented, and I've been able to re-challenge both of them, doing it, you know, in a in in my fashion, which is basically saying, what's the mechanism of developing agranulocytosis? Well, we know it's immunologic. So, what do you do in an immunologic situation with a drug you really need? You develop tolerance. So I started with micro-dosing, giving them 6.25, taking the smallest Closine pill, cutting it in quarters, and doing that for two weeks, and then going up to 12.5. And you know, I'm two for two, it's hardly a large sample, but it it shows you can use this drug. But I'm committed, and why am I so committed? Because my people get better.

SPEAKER_03 16:42

And you know, let me uh let me ask you to explain something to our listeners or talk about something to our listeners, you know, all these side effects that that we read about or that I read about before Nick started waking, salivation, all these things. Now, when I look, you know, Nick is not that you know, Nick's like you're immune to every side effect. But he's not really, it's because Dr. Leighton started him with a um a regime that had these things off at the past, and I want you to talk about that a little bit so people understand how you put together.

SPEAKER_01 17:22

You gotta mitigate predictable side effects, and there are predictable side effects. Clozepine, along with the lanzepine, as I said, will cause weight gain, hyperglycemia, highest blood sugar, really terrible triglycerides, sedation as you go up. Yes, excess of salivation, constipation, every single one of these things.

SPEAKER_02 17:46

These are all things my son complained about. Right, but won't go back on it for that reason.

SPEAKER_01 17:52

But they're all so easily fixed and all so predictable. And it's just as long as you treat them, it's not this, but psychiatrists is the problem. They have to be retrained, they're not trained as doctors. It's much easier to prescribe Latuda, which has no side effects, doesn't do can I curse a little? It's pretty doesn't do shit, but but it doesn't make them worse and doesn't you know cause any problems or a vral or or a calypta or any of this garbage that's out there, but they don't work. They don't work in the same way, they're not nearly as robust, and it's it's not easy. Psychiatrists want one, two, three. I'm gonna be a psychopharmacologist, I'm gonna combine three different antipsychotics. There's not one shred of evidence that shows that supports that. Uh, and you know, there's this tremendous literature with closine. That's why there's 600 articles a year that still come out about closapine. So, you know, when I'm talking to my you know, people at Brain and Behavior Research Foundation, the people that really know what they're doing on the whole, they say, of course, yes, we do this, but try to get it out to uh, you know, Johnny Public uh psychiatrist who's seeing people every 15 minutes. You can't do it like that, it just doesn't work. You really can I can I ask a question here.

SPEAKER_04 19:20

So I'm sitting here with a son who actually has had a granulocytosis. He's terrified he's going to get it again. He has a psychiatrist who spends three to five minutes with him once a month on the phone. And um started out with with clocine um when he was like his second or third year into schizoaffective disorder.

SPEAKER_01 19:48

Pretty damn good because the usual is almost 10 years.

SPEAKER_04 19:51

Yeah, but that was because he was doing so very poorly. So they finally uh let him do it. He gained 120 pounds and had a granulose cytosis. He got nothing for the side effect.

SPEAKER_01 20:03

Right. So that's the problem. Right.

SPEAKER_02 20:08

So the question, Mindy, is what?

SPEAKER_04 20:11

Yes, when he got it, they told him he could never go on it again.

SPEAKER_01 20:15

Right, it was called a no-challenge list.

SPEAKER_04 20:18

So he wasn't on it for 15 years until he did very poorly again, and now they've let him go back on it again. So, Mike, I have a couple of questions. One of them is what is the current thinking?

SPEAKER_01 20:30

If you get a granulocytosis, instead of telling people you can never go on it again, I know your patients haven't had it, but what do but they were referred to because they were they were a grand and no one else is willing to do it.

SPEAKER_04 20:46

So, what would how long do you make them wait before they can try it again? Six months, not 15 years, like six months.

SPEAKER_01 20:55

Six months, six months is the teaching. Um, and believe me, that is not rocket science, and that has very little data. That was just what people were comfortable with in terms of, you know, that's given us a trial that clearly this kid is not doing well and he really needs it. Um, and then doing it like I just mentioned it, you know, doing it as if it was tolerance, and you build up and the success rate with a grand of rechallenge is well over 50 percent. How much over 50? We don't know. The literature is tiny. We're talking 50 patients so far in the literature, it's about 60 success rate. So 30 out of the 50 so far.

SPEAKER_04 21:36

If your patient got it again, would you also wait uh six months and try it again, or would you be afraid to try it a third time?

SPEAKER_01 21:43

I think if they got it again, I probably would at this point, but you know, I would have to see how they're doing. Are we really? I would have to, you know, I will try certain things that would make sense to me. Um, you know, Herb Meltzer has talked to me. About uh combining, for instance, nuplizid, which was derived from clozepine. It's a drug that's used for Parkinson's. And there's two drugs out there, uh Zyprexa, which has got some activity that I think is somewhat reasonable, and a new drug, anzepine, that just got approved, which is actually amylali sulpride. It was only available in Europe, and that's actually a little bit more effective than clozepine. So, my my take, God forbid it happens, and it'll probably happen because I'm going to treat enough people. I would probably do a combination, and this is the only combination I tried with amisulpride with uh nuclizid. And the reason I would do that is because I nuclizid only works on 5HT to a certain serotonin receptor. That's really important in terms of the prefrontal cortex and very critical for the psychosis that we get with Parkinson's disease. The only other drug that has a significant amount of that action is clozapine. So in Herb Meltzer's hands, and Herb is the one who brought clozapine to the US with John Cain back in 1990, and this is unpublished stuff. So he said it really can boost the other antipsychotics in terms of their actions, because the amisol pride is the second most active antipsychotic and seems may have some negative symptom control, may have. Again, compared to clozpine, none of these are in the same ballpark. But as I said, you know, I would I would take that six months and explore that possibility. And then if the kid was still no good, I I probably would, and I would just go slower and I would do like 6.25 and microdose them for two or four weeks and just follow it because I would be in an uncharted area, uncharted water. And before I do this, also that's the other thing you should know is I put all my patients on lithium. Okay. And why I put them on lithium is not because of its properties as a mood stabilizer, but lithium is granulocyte stimulating factor, but the cheap version. So you can do uh you can uh inject granulites, granular granulocytes stimulating factor at a cost of a thousand to fifteen hundred dollars a month, or you can give lithium, and that stimulates bone marrow production of white blood cells. So those are the two things I forgot about.

SPEAKER_03 24:37

But do you guys see how he is thinking outside of the box and making his medicine in a way that but that's because we go see psychiatrists and they're not looking at the whole picture and they're not looking at the medicine side of it. So here we have this drug where all three of us who have been or are on it, and we know it's a good drug for them. And we have a situation where people are not, doctors are not telling us. I mean, I did not hear about this until I was three years ago, 20 almost 20 years into this with Nick, and it's not like I was under a rock. I mean, I wrote a book for God, and I nobody talked about it. So, Rob, what do we do? How do we change right?

SPEAKER_01 25:22

Well, I need an army and I need to keep going. I mean, you know, I was talking all over the place, as you know. I was going doing grand rounds all over the New York area. I did one for California. I'll do it wherever they have me go. I did one in Houston, I went to Tulane. I COVID kind of stopped me a little bit.

SPEAKER_00 25:41

Right.

SPEAKER_01 25:41

So you're still I am still on these things. I'm still a voice out there, I'm still part of uh there's a treatment resistance in psychosis panel, which is basically a clospine panel, because when you're talking about treatment resistance, everyone agrees that clospine needs to be the drug of choice. So we're all out there trying to promote it in our respective countries, and it's just getting to the base people and showing them the details. The biggest thing that will finally come from this, Miriam, is when um my statistician and and good friend uh yes, Rachel Streif comes and finishes our data, and we put our information in the literature because our, you know, we have uh about a hundred kids that are out a year now with clozepine. Um, and we've Rachel, you know, as long as they are adherent to what I'm I want of these hundred kids, in other words, they'll take the meds as prescribed, and they they need the support as well. You have those two things in place. You need supportive for you to use clozepine. They got to do it right, they can't skip doses. The repercussions of using clozapine incorrectly, as you found out, the 150 pounds of weight and all the rest are enormous. So you have to do it right. It's when I started out, Team Daniel, our initiative was just to use clozapine, but it soon became apparent as more and more of these kids came to us just for management of their clozapines, that none of these people were doing it right. I'm still waiting for a really good regimen. It's getting better. Columbia, uh Presbyterian and Harvard are much better. I mean, I've lectured there, I have people that I've talked to there. Lieberman is at Columbia, you know, there's some great people, a guy by the name of Muffson, who was another big proponent. Deborah Levy was at Harvard. There are some great people there, so they know a lot of this stuff.

SPEAKER_02 27:41

Right. So, Rob, Rob, this is how do we spread it?

SPEAKER_01 27:44

We have to teach it early on. They were listening to medical students.

SPEAKER_02 27:49

Right. So, yeah, now that's the moms.

SPEAKER_01 27:52

The moms have to be insisting. That's why I wrote the book. You know, you just have to get this information out there. But the the key is, and what is really critically important is if you can get them to use it, psychiatrists, and they get a few, they get hooked. Why doesn't the drug company that's going to be better?

SPEAKER_04 28:14

Why doesn't the drug company that produces clozapine help with use it?

SPEAKER_01 28:20

Generic. It costs pennies. It's absolutely an orphan drug. So there's about eight different yep, eight different so what I've gone back to is said, you know, what would be the perfect drug? It would be clozepine in a long-acting injectable formulation.

SPEAKER_02 28:43

Oh, that would be amazing.

SPEAKER_01 28:44

Yes. And you know, there is now a good injectable formulation, but it's only available in uh Denmark, England, and Israel. Um, as far as I know. There might actually have gone to Finland recently. And, you know, I'd like to try to bring that here because it doesn't take much, you know, and I keep fantasizing about how I can make that a long-acting injectable, because you can use drugs to block clozepine's metabolism, which we do with Nick. So you can probably make it so that you'd only be able to inject it maybe every two or three days. Again, we'd have to figure this out. This has never been done.

SPEAKER_03 29:23

Injecting our listeners, Rob, like you know, all these mothers down here who have not heard of clozepine till right now when we're talking about it. Well, I can't give everybody your phone number and tell them to call you on Sunday. So that's what I have to do. What do they do? Where do they go?

SPEAKER_02 29:41

I mean, what advice would you give the families of people who are who would who are now going, oh wow, we've never tried this. What can they do?

SPEAKER_01 29:52

You go to your psychiatrist, but you educate yourself. You get meaningful recovery from schizophrenia experience, mental illness, and you get the clozepine handbook. The clozepine handbook's a little dense, it was designed really for clinicians and mine. Um my whoops, my section of uh of the uh meaningful recovery was kind of you know, like the way I talk. I, you know, I I go back and I talk medical ease and slap me around. If my wife was here, she'd be kicking me because I, you know, everyone has a different level of expertise. But honestly, we do not have a meaningful coherent system to take care of people with psychotic disorders. Oh, we know that so you have to be your best advocate, and you just have to pester them and tell them I'll talk to them because I will, I'll talk to psychiatrists. Um, you know, I have I put calls in um all the time. A lot will not talk to me because they say, Why would I talk to that nephrologist?

SPEAKER_03 31:02

And that's you know, can't control listening, you know, um the the people in our group, the parents of the kids who are treated by Rob, we have a meeting once a week, and everybody there says the same thing. We all have like copies and copies of these two books he mentioned, meaningful recovery from schizophrenia with the college, which is Rob's book and the college being handbook. And you know, I hand it out to people. I would say, get a few copies of the book. And the first thing you do is you go to your treating psychiatrist and give them these two books and say, This is what I want. And you know, when you're approaching them with a book and with you know data, they can't just say, nah, nah, it's nothing. And so it's it is very, and also read the book yourself.

SPEAKER_01 31:48

I never got through the handbook one, but the other one read the handbook, especially the beginning, especially the stuff about efficacy. Yeah, but the incredible thing is they keep going through one antipsychotic after another antipsychotic. Well, we know damn well if you've had an adequate trial of one antipsychotic, the odds of any other drug except for clozpine working or remote. The the incidence was 7% with allanzepine. And that is a level of recovery that does not approach clozepine on the whole.

SPEAKER_02 32:19

No. And clozepine, you know, in my experience with my son, and he was on it quite some time, uh, had gotten to only one month, you know, once a month blood draws, but he always hated the side effects. However, he got to the point because it works on the negative symptoms. Uh listener, if you've never heard this negative symptom is what's taken away from your loved one. And it worked on that in my estimation, uh, because he was able to participate in his own care. He worked full-time as a as a restaurant server and paid his own bills and actually got off disability all the while completely hating the closer. Like he he we like kind of said, it you can't live here tomorrow if you don't take it tonight. That was our one uncomfortable moment.

SPEAKER_01 33:08

And he took it in combination with a different mood stabilizer, depicte, and you know, so it's the worst drug to use with clozepine as a mood stabilizer because it accentuates clozapine's negative uh side effects, it increases the weight gain and it increases sedation. It's very this is where the clozapine handbook and my book differ. You know, he says, use depicote. Oh, yeah, it does increase the risk of agranulocytosis. So if he got eight grand on depict, you should be able to re-challenge him.

unknown 33:39

Right.

SPEAKER_02 33:39

Well, he didn't get it. He didn't, I mean, he just did very well, but then COVID came, he lost his job, he crashed five and a half months in the hospital, and now the only thing he'll do is a howl doll inject injection, and it is what it is for now.

SPEAKER_01 33:52

For now, but you should re-explore.

SPEAKER_02 33:54

I will re-explore convincing him. Uh, we we'll see, but I can certainly educate myself on different ways to do closer L so that he wouldn't have the side effects that he hates.

SPEAKER_01 34:06

And that's the thing getting rid of the negative symptoms, the amazing thing that is so different about my kids is they look like everyone else. They're back as part of the tribe, they're just out there doing their thing. You know, I have a kid who has a I don't want to call it a major motion picture, but it's it's a motion picture and he's making money from it. It's on Netflix, and no one knows that he's got serious mental illness and he's got clozapine levels that you're aware of in six, seven hundreds, which is a fairly robust amount of closapine. And he's just sailing along, or Daniel does a stand-up. Everyone knows Daniel's got schizophrenia because he puts it as part of his stand-up routine, but no one believes it. They think it's a joke. He says, No, this is what I've got. You know, that's not in fact, even when we went to Deborah Levy, God rest her soul, 15 years ago, said Daniel can't have schizophrenia. He's because he's even doing stand-up comedy before closetine, because he has a sense of humor. So there's that's that other part to defeat is that nihilism of what these psychotic spectrum disorders are. What can be accomplished, what could be achieved. I've got three kids now that have babies. I have two Liams and uh oh my God, I'm just an athelia that just uh from closopene uh unions as it is.

SPEAKER_02 35:29

I love how you call them my kids. That's very well, they are my kids.

SPEAKER_03 35:33

I mean Can I tell you something about him? When you say, Oh, the doctors tease your tongue indie for you know three to five minutes once a month. Here's Dr. Leitman, who you know, I call out of the blue, and then COVID hits. We've never been in the same room together. He has met this last year. He meets with Nick once a week on FaceTime for a minimum of a half an hour. Nick has never engaged with a doctor in his office for more than a couple of minutes until he shuts down or walks up. The FaceTime and they do their push ups and their jumping back together. I mean, it's it's beyond just the quality. So in a way, I mean these two are their gifts. And and it's it's changing, it's changing lives in a big way.

SPEAKER_04 36:28

I'm really jealous. I'm really, really jealous. You know, my son psychiatrists I've never spoken to her and has been going to her for several years. Uh, she doesn't do emails, not to mention take a phone call on Sundays. So we call this um regulation for gentlets of charge. She gets to talk to the psychiatrist, I have a release, a universal release that includes our face, but still I can only talk to the case manager. I'm a pretty aggressive person, but I'm so glad Jen is on closet that he has a psychiatrist that he's taking this med, that I have decided to pick my battles, that I just um can't stand it. Finally, we got through with the medforman. After I read your book, I just needed to be on medforman. I was going to pick weight gain, it's such a problem for Jen. So he went to the psychiatrist. I just said that one thing. Don't forget that, don't forget that. He did not, and she said she couldn't prescribe that. He would have to go to his physical doctor for that. And so he did. So we haven't even gotten on to the other drugs that mitigate weight.

SPEAKER_01 37:36

Well, there's so many things that can mitigate weight gain. I mean, our data is pretty amazing in terms of anyone who's come to me overweight, you know, almost and nothing's universal. I would say 80, maybe higher percent has lost weight.

SPEAKER_03 37:51

Um you should talk a little bit about the running thing, Rob, about that aspect.

SPEAKER_01 37:55

Well, that's but that's the whole thing. As Randy alluded to, the negative symptoms get better so the kids can start to participate. All these kids couldn't do a regimen. I mean, Daniel, before we had him on closapine, he was gained maybe 30 pounds, 40 pounds on all these other antipsychotics. And I try to get him running, he would just break down in tears and he couldn't participate. Got him on closapine. I got him, he's run seven half marathons now. I have another two kids that are kicking my butt. Now it's two of them.

SPEAKER_03 38:26

Of course, Rob has them to his house every Sunday and runs with them.

SPEAKER_01 38:30

Yeah, but now they're running me into the ground or discouraged.

SPEAKER_02 38:34

But I mean, it's that kind of engagement that's I need to I need to know, and our listeners need to know, there's got to be more people out there like you, Rob, because they can't all go to New York and come to your house on Sunday.

SPEAKER_01 38:49

So I you know, I wouldn't try to I'm trying to come up with a and this may sound selfish. So I'm trying to come up with a lot of people. We need to know what's someone in Minnesota gonna do. You can you have to start paying these people to do this. I I I'm very fortunate. I I have some intergenerational wealth, so um, you know, so I don't I don't begrudge psychiatrists from making their money, you know. There is what I do financially, you can't do it, but I'm being a little tougher these days, and um making people actually pay. And I think the government has to recognize the value in this. Uh, there was just a great study that came out from England. Uh, they have this uh thing called NICE. I like that. Um, it's National Institute Health Care Excellence, kind of NICE, you know, national care excellence. Um, and they looked at three things that would save England the most money in terms of taking care of psychotic illnesses. And what were those three things? Well, number one, of course, was if clospine was used correctly, far and away would save on the average of 20 to 30,000 pounds a year. And I think pounds are still worth more than the dollar. So I don't know, it used to be it's just a little bit, it used to be like two dollars and something.

SPEAKER_02 40:14

Two dollars and forty cents, yeah.

SPEAKER_01 40:16

Something like that. Yeah, those are the days, but uh now it's better. Yeah, and when I go to England, I went to England a few years ago, it's great. What a great exchange rate. But that's one. Number two is, and this is why Mindy, I disagree that we about our platform we were talking before we started recording. Cognitive behavioral therapy in the prodrome is incredibly useful and working on um just processing speed in the prodromal illness because you have a high risk of psychosis individuals, and about a third of those will go on to full-time psychosis. So we know that if you use CBT and you use things that increase processing speed and you work with the kids, you can dramatically decrease the number of these kids that go on to develop psychotic disorders.

SPEAKER_04 41:04

How much and let me just put in here, so in case the listeners who didn't hear us ahead of time, I strongly agree with that. So when you say we disagree, it isn't about the importance of early intervention.

SPEAKER_01 41:15

Oh no, early intervention is critical.

SPEAKER_04 41:20

Um that we were talking about earlier, but we agree early intervention is key.

SPEAKER_01 41:25

That's right. And the third thing, which it shouldn't surprise surprise any of you, is in the first episode, psychosis involves the family. Get the family in and get them supporting. So that psychiatrists don't talk to families, I think is one of the greatest sins of all. Absolutely, it's just not the closetine, it's everything around it. I always talk about engagement, access, treatment, support. You need them all. So you got to engage the kid. A lot of that is just having a good psychotherapeutic relationship with the kid and the family as well, because that's where the ultimate support will be. Where I've failed is when I can't get the family involved. And the kid is kind of half there, half not there. I, you know, I have no way of knowing what he's taking, except I do levels every time they come in. And you know, the level keeps coming back as non-detectable. So I know I'm not getting anywhere. You know, so these are the kids I can't get better. But where you guys are, you're out there, you're willing. And I do believe most doctors, psychiatrists even included, sorry, watch what I'm saying, um, are well-meaning. I think they're a little put upon. Um I know the bottom of my class with the psychiatrist, and they were not thought that kindly of, you know, the people going to psychiatry. Now, I some of the people that were in my class, I'm actually very good friends of. I don't, and you probably know Carol North. Do you know Carol North? She uh she wrote she supposedly, well, she has schizophrenia or so, some form. It just shows you what the heterogeneity of the illness is. And she got dialysis as an experimental therapy. I'm not telling anyone to do dialysis because there's no rhyme, reason, or wherefore why she got better. But she got better while she was doing dialysis. Voices went away. And if you look at her history, it really looks, you know, DSM5, classic psychosis, long-standing, no mood component, really detached, really delusion, really tortured by voices. And everything got quiet. And she's a total doll. So I won't say all psychiatrists are bad because she was in my Washington University med school class. And I have only tremendous respect. There's other guy, Reagan's also, who's also very good now in California.

SPEAKER_02 43:49

Yeah. Will you be able to, because we we're actually only have about five minutes left.

SPEAKER_01 43:55

Oh my god, I I what else you want me to talk about? I well, sorry.

SPEAKER_02 44:00

There's well that that's how you operate, which is wonderful. So and we did we just had these questions just in case we okay. We had a lull, but we haven't had a lull. So it's fantastic. I would like to I but there's there's so much, and I I'm hoping that you will be able to provide us with some links to the nice study and to maybe other nephrologists or other people who think this is a great study.

SPEAKER_01 44:37

You have to buy it. I bought it.

SPEAKER_02 44:39

Okay. Well, you know, afterwards, maybe in an email, we can put some of the links in the description.

SPEAKER_01 44:44

Yeah, but what you really need if they got if they really want the information, because there's there's I mean, if you really want me to talk about everything, it would probably take me 10 hours.

SPEAKER_02 44:54

Exactly.

SPEAKER_01 44:55

Uh, but if you just go to, and this is one long link, Team Daniel running for recovery.org. There's a lot of my talks on there, there's a lot of things like this, the Zoom sessions.

SPEAKER_03 45:10

I've done blogs, and they asked I'll give you some stuff, Brandy, that we can we can uh post.

SPEAKER_01 45:16

And then there's the Closapine Facebook page, which is also the Team Daniel Facebook page. And that's by there, you have to go, you have to answer some questions and make sure that we're legit because we don't want anyone um you know cause causing a ruckus. We're pretty particular there. Um, those are two good links. Obviously, the book, obviously the handbook. Um, if people want, they can use, they can email me at rslateman at late m-n at aol.com, and we'll put them on our listserv. And Mimi knows I put out my rants and my other articles, and I go all over the place because I love medicine. So I'll talk about COVID, I'll talk about clozapine, I'll talk about psychosis. I put out a little thing of history of significant medical inventions, but then I ranted about look at this 60 years later, and we're still not using clozapine. What good's with this? This is ridiculous. Um it's insanity, it's truly the insanity. And you know, if I had my way, I would have a national AOT assisted outpatient treatment, because there's some kids I cannot engage, no matter what. They're so detached from reality, and you can't bring them to the table. If you can't bring them to the table, you can't get them there. I would revise the HIPAA laws where they would be liable if they did not corroborate and talk to the parent, as opposed to saying, um, oh, I would love that. Oh, yeah. That is, you know, how many kids have walked out of the ER? A lot of people don't understand psychosis. These kids can hold it together. They are psychosis is not being, you know, in the nether worlds all the time. Psychosis is maybe having a persistent delusion that is affecting you and negatively affecting your life and impacting you or other people. But a lot of these kids can talk a great game for a short time in an emergency room and talk your way out of it. All these people had to do was call the parents, get on the phone, and say, you know, he tried to kill himself last night, he threatened to stab me. They just don't get that information. And they think the reality is they think they're stymied by HIPAA. Um, I was at a conference eight years ago, uh, nine years ago, is one of my earlier talks, and I got up there and I said, I always talk to the parents, I don't care what the kid says. And damn it if this gets me into trouble with HIPAA. And it happened to be the woman in the audience said, I'm the commissioner of HIPAA for New York State, and you're not in any trouble for what you just said.

SPEAKER_03 48:06

Oh my gosh. Wow.

SPEAKER_01 48:08

I said, Okay, that's good. And um Janet, um, oh my god. Hayes. New Orleans NOLA, what Hayes Hayes, thank you, did a great thing with uh HIPAA, and it's one of the podcasts. I did one with Eric Smith, who you guys have already had on. Yes, um, you know, uh, where we were asked questions by Janet, but her NOLA series has a lot of good information on it as well. Treatment Advocacy Center, you gotta go to the that site, TAC. That's all about AOT, but they also have a lot of good information and a lot of references. They talk a lot about anasognosia, the unawareness of the illness. Um, uh cure SC is another good site. Um, and uh that's Bethany's site, cure sc.org, I think.

SPEAKER_02 48:57

Right, and I will put all of these in in the description.

SPEAKER_01 49:01

They're all good sites. Oh, and I should probably mention my old formerly sarta. What is it now? Sarta it's not a chance.

SPEAKER_04 49:11

The name changed, but I can't remember what it's I know.

SPEAKER_01 49:14

I wish they I was not one of the things that I've got to do. I don't know why they changed. I was not thrilled with it.

SPEAKER_02 49:18

I know Sarda, but it's like the artist for it has a decent website.

SPEAKER_04 49:27

Before we go, I have one question. I'm burning to get in here.

SPEAKER_01 49:31

Okay, good.

SPEAKER_04 49:32

Okay, this is our last question, then we'll do a sum up. Okay, and this is for all the rest of us who know Dr. Lateman. Do you think there's any chance that med therapy management will become reimbursable? Because the other psychiatrists use that uh and they don't get paid for it. And I think that's a big problem.

SPEAKER_01 49:53

Oh, that was my point. That that was where I was going to talk about being selfish. Yeah, I think I have to go to SAMSHA. I think there should be a research project. Uh, a lot of well, if you get on my webserve, there's one article I send out called uh surviving and thriving in schizophrenia, where I propose what we did in nephrology, because in the beginning in 1967, dialysis, no one would get it. So what they did is they bribed nephrologists. So we would get $500 a month for managing dialysis patients. So all of a sudden, these pain in the ass patients, and they are pain in the ass patients, believe me, worst patients I've ever taken care of. Um, they were gold because you get $500 a month just for managing them. You have to do something like that with clozepine management. And what I proposed is because I think it's twice as hard and twice as much work, but there's also God knows how many times more to be gained. Most of these people on dialysis are, you know, older diabetics. They're going, they're approaching the end of their lives, most of these people. People with first episode psychosis, they have their whole life in front of them. And if you would do this right and you would use clozepine and we could promote that, you know, we would save the government billions, billions of dollars. So you gotta be generous, you gotta bribe the psychiatrist, should be a thousand dollars a month for the first six months. I'm serious because no, it's it's really, and that's believe me, the return on investment would be amazing, but we have to show this in a in a research, you know protocol. They will not do it, and then move it down because after the first six months, the risk of eight grand goes down. And the reality is it usually takes about six months to build the regimen and get it right, and then it gets easier, then it's then I would tone it down so there'd be 500 in maintenance. After that, I went 750 for six months, six five hundred. I don't know what the number should be. I just made those up as I went along, but I thought it would be something that would draw them in. That's what we need is to have them drawn in and listen because think about it, they give they give this stupid uh in Vegas shot $1,200 to $1,600 a month. Closamine costs pennies. What a waste of money, and you just don't get the same kind of recovery, and you're gonna bring these kids back in the workforce, and it just insanity, just but people don't know. There's a nihilism that they don't see this degree of recovery, and it's because they don't do the work. There's a lot of the thing is the studies only go out six months a year with clozpine because so much of clozepine is not the changing the chemical, you know, it's always about dopamine and the receptors. Oh, so much of clozepine is changing genes. And when you change genes, you change protein synthesis and you're changing pathways, and then you're changing what are called harmonics because everything's in a rhythm. That's why you have the EEG, where things then come into harmony and things are working better together. These things take months to years to really have significant impact, and that's why kids get better over such a long period of time.

SPEAKER_02 53:09

Right. The longer my son was on it, the the better he got, even with the debacode. We have to wrap it up, unfortunately. But uh Mimi has just texted me that it's uh SARTA is now schizophrenia and psychosis action alliance. Yeah, so now we have that. Can we um I'm gonna end with you, Dr. Leitman, but maybe we can each go around and just give one uh piece of advice or something that struck us from this conversation. And I would since I'm talking awesome. For me, it's just that uh it reinforces for me. I always say when I speak to groups about the families' involvement that families need certain support, education, acceptance, resilience, uh, communication skills, and hope and humor. And that again, educating yourself as a family member is so important. So in in the description and in this podcast, there are a lot of places we can go to educate ourselves so that we can then say to the psychiatrist, listen, I know about this and I want you to try this and encourage our psychiatrists to think outside the box and to learn more themselves. My son started on CloudRock because I insisted on it. And for nine years, he got to the point, again, it was a slow build because he had had seven hospitalizations. It wasn't early, caught early. But by the end of the nine years, he was a taxpayer, not a social security recipient. But chutes and ladders, he's back down and no longer on it. But I you I could see what could happen that if he had the right mix, it would have been so educate yourself and insist on on trying it if you feel that works for you. Mimi and then Mindy and then Rob will end with you.

SPEAKER_03 55:00

Okay, yeah, I would just say get the books. If you're you know, if you're at all interested in getting your kid on this medication, and believe me, I look at all of Dr. Layton's kids, who a lot of whom are a lot younger than Nick. And I look at Nick who's 35 and has been sick for almost 20 years. And you know, I lie awake at night and just think about what if I found this in the beginning. So if you're out there and you're interested in this, get the books and be a pest and go to your doctor and don't give up until you find a doctor who will help you do this. I mean, just keep trying because it's all right there, all the ammunition, all the data, everything is there to for you to take with you. You know, go on a crochet, give it a try. I mean, it's not gonna do everything for everybody, but it certainly is your best chance.

SPEAKER_04 55:53

And like Randy, um Jim got on it because I was aggressive. I knew about it, but what I didn't know was if you got uh a granulocytosis, you could go back on it. And they told us well, you couldn't. And Jim did 15 years before he finally got to go back on it again, and now he's doing wonderfully well. So I thank you, Dr. Layteman, for your book. I only read it this year because I didn't even know it existed. And now I know what to advocate for. So we got the medforman, I've got my whole list, and um, I think I'm going to be aggressive enough to try to meet with this um psychiatrist. I have just been so happy that Jim's working with her that I haven't done that, but I just feel like there's so much ground he could be gaining if she would be listening to what I wish I could get her to read your book. I feel I wouldn't be able to I could buy her one, I could give it to her. That's a really good idea.

SPEAKER_01 56:55

I think another dollar goes to Keith Daniel. We get a whole dollar of every book.

SPEAKER_04 56:59

Okay, I I better get her the book, and then I'm gonna, if she doesn't do anything about it, then I'll think of my plan B.

SPEAKER_01 57:06

Okay. Yeah, so the the key is that you guys are the key. You're the ones in the trenches, you're the ones that live with them every day. And all I'm saying is why not use the best available medicine, give the best support, the wraparound services that you need, and voila, a lot of these kids get dramatically better, and the longer you stay at it, the better that they will get. So don't settle for the nihilism. You've got to be aggressive and educate yourself. You gotta start with the educating yourself and then educate the community around you, and um look at our websites, uh, see some of our kids. You're all welcome to um, and Mimi can get you on to the Zoom. They getting they get a little unwieldy at times, but you know, when we have 40 people on, but there is help, you know, the old line where there's hope there and there's help. And this provides so much of both.

SPEAKER_02 58:28

Okay. And as we've certainly explored in this podcast, you know, stop the insanity. Remember that from years ago. It we're trying to stop the insanity in the system so that we can stop psychosis from affecting our loved ones. And there's a lot of work to do. We can do it. Rob, thank you so much for joining us today.

SPEAKER_01 58:49

Me, you know, and Mimi knows I like talking about this stuff.

SPEAKER_02 58:53

It's a pleasure. I hope to meet you in person one day.

SPEAKER_01 58:56

I hope so too.

SPEAKER_02 58:57

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at Miriamfeldman.com, mindygryling.com, or randyk.com.