← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
Dr Laitman: A Fathers Journey to Transform Schizophrenia Recovery
00:30:31
In this episode, Dr. Robert Laitman shares his journey and expertise in treating serious mental illnesses like schizophrenia and bipolar disorder, which he began due to his own son's struggle with schizophrenia. The discussion covers various aspects of managing mental health conditions, including the challenges of finding effective treatments, particularly the use of Clozapine.
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- [00:01]
A
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C
Welcome to why Not Me? Embracing Autism and Mental Health Worldwide hosted by Tony Mantour, broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys Journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantour. Welcome to why Not Me. Embracing Autism and Mental Health Worldwide. Joining us today is Dr. Robert Laitman, who is a distinguished physician with extensive expertise in internal medicine, where he has built a strong foundation in diagnosing and treating a wide range of complex medical conditions. Specializing in serious mental illness like schizophrenia and bipolar disorder. He seamlessly blends his medical precision with compassion, making him a trusted leader in addressing patients complex needs. He has a wealth of information for us, so before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors.
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is sponsored by Talkspace. Last year I went through many different life changes. I needed to take a pause and examine how I was feeling in the inside to better show up for the ones who need me to be my best version of myself. When you're navigating life's changes, Talkspace can help. Talkspace is the number one rated online therapy bringing you professional support from licensed therapists and psychiatry providers that you can access anytime, anywhere. Living a busy life, navigating a long distance relationship, becoming a first stepfather, Talkspace made all of those journeys possible. I could speak with my therapist in the office. I could speak of my therapist in the comfort of my home. I was never alone. I Talkspace works with most major insurers and most insured members have a zero dollar copay. No insurance? No problem. Now get $80 off your first month with promo code SPACE80 when you go to talkspace.com match with a licensed therapist today at talkspace.com save $80 with code SPACE80@talkspace.com this message is brought to you by the Capital One Venture X card. Venture X offers the premium benefits you expect like a $300 annual Capital One travel credit for less than you expect. Elevate your earn with limited double miles on every purchase, bringing you one step closer to your next dream destination. Plus enjoy access to over 1000 airport lounges worldwide. The Capital One Venture X Card what's in your wallet? Terms apply.
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A
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C
Thanks for coming on.
- [05:20]
B
Oh sure. No, it's my pleasure. You know, thanks for having me. I mean this is something near and dear to my art.
- [05:26]
C
It's great to have you here. Could you share with our listeners a bit more about what you do?
- [05:31]
B
I am a internal medicine specialist. I was trained in nephrology and geriatrics, but for the last 20 or so years I've devoted my practice as well as my wife who just walked out the door to taking Care of people with psychotic illnesses. And the reason I'm doing that is because my son, 20 years ago developed schizophrenia, and we just didn't find adequate care. We thought there was tremendous nihilism in the psychiatric community. We were told, for instance, you know, more than the loss of your son and your expectations. And I just didn't find that to be an acceptable solution.
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C
Yes, I think that's very understandable. So when you decided to take this on, what confronted you? What were some of the bumps in the road, so to speak?
- [06:15]
B
Well, initially, the biggest bump was actually my wife. And she's right, because, you know, again, we're both physicians. You're not really supposed to take care of your own. But I pointed out to her that I'm not traditional. I've been taking care of my mother and father because I was, as I said, a nephrologist and gerontologist. And, you know, and I. I've done a pretty decent job of that. In fact, my dad ended up living to 101, as I already mentioned, and my mom lived to 99. And I said, look, I'll make every attempt to find good care for Daniel. But after we started to read the literature and we kept going and being referred to one psychiatrist after another, we never found anyone, first of all, for the first year or so, actually six months, that was willing to prescribe clozapine. Finally, we met Lou Oakler, who wasn't taking new patients at the time, and he referred us to another physician. But it was still going to be another year for clozapine. This guy was reasonably said, yes, I'll consider it. Let me fix Daniel's regimen. Because by that time, he was already on three antipsychotics. I was chomping at the bit for my opportunity to take care of him, but I deferred, because, again, you're not supposed to take care of your own, traditionally. Eventually, he got to the point where it was, you know, just he needed to be on clozapine. And we finally prevailed on the treating psychiatrist to start him.
- [07:36]
C
When you finally had the psychiatrist change his mind, what happened next?
- [07:42]
B
Over time, it got to the point where it was so difficult, and fortunately, we've made the prescribing of clozapine easier. Easier because we'd gotten rid of the requirement for the blood. But back then, it would take me hours every week just to get Daniel's supply of clozapine. I'd have to call up, get it approved by the insurance company, make sure I had the blood work, and I even had my own in office lab. And then I would send the results to the psychiatrist, waiting for him to write the prescription, because for the first 26 weeks back then, it was weekly. And I just. I got tired of it, you know, and I found it a situation almost guaranteed to fail because he wouldn't give more than the absolute number of pills that Daniel was on. So I just eventually just took over. And it was much easier after that. You know, I wrote for adequate amount of medication. I did the required blood work. It was much easier because I had the blood work right in front of me. I took steps out of the way.
- [08:43]
C
Yeah, that sounds like it was very much easier. Were there any other issues that you had to deal with?
- [08:48]
B
Also the lack of knowledge on how to prescribe clozapine correctly. So six months into Daniel's illness, he developed a sizable aspiration pneumonia, an abscess on his lung, because no one had really talked to us or explained how to take care of the excessive salivation that comes with clozapine. So we ended up treating him with IV antibiotics at home. My wife and I took turns putting an intravenous in every single day, sending him to school, taking the IV out, putting a new IV in, and 28 days later, we had him with clear lungs. And in the meantime, we started to treat dysalivation. So it became very apparent to me that if you're going to use clozapine correctly, because I kept reading and reading about it and all the terrible side effects, which is why people weren't using the drug.
- [09:33]
C
That is a big question. How do you handle the side effects? Because one thing can lead to another, and then all of a sudden, it could get out of control.
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B
Every one of these side effects is predictable. You can give predictable pharma, you know, pharmacology. Just using pharmacology, for instance, with the excessive salivation, we took care of that, doing the simple things, propping his head up, obviously, and making sure that we diminished the salivation using just. We used something called a Ipatropium nasal spray, and we would just squirt it under his tongue at bedtime. That diminished the salivation, and aspiration no longer became a problem.
- [10:15]
C
Yeah, that's great. Were there any other side effects or anything else that you was concerned about?
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B
Also, as you start on Closbine, the heart rate goes up again. Normal physiology. So we would put them on a very low dose of a beta blocker, and that took care of that. And you just go down the side effects. Weight gain, almost universal with Clozapine. Why allow it? You know, unfortunately, clozapine has effects on appetite. It's very something called antihistaminic and anticholinergic. So it actually stimulates, greatly stimulates appetite. You know, it's not the kids being a pig. The kid is almost driven to eat. So what do you do? You give them metformin. It's not that hard. And these days we are really well equipped because we do the injectables, which Daniel did not require. And of course the beauty of this, where Daniel was really sick and at his worst was almost catatonic, he got better in terms of his ability to comprehend, to think, to participate in his own care, something that would make you happy. Tony. He started to actually watch his diet and now has become basically a pescatarian, not a vegetarian, but a pescatarian. And he exercises regularly. And that obviously, you know, helped his health almost as much as all the other medicines that we typically add, you know, to assist kids.
- [11:37]
C
Yeah, that's great. It's all about the end results. Now this was 20 years ago. Has anything changed the medication? The way you look at it, just the overall procedures that you use compared to 20 years ago.
- [11:52]
B
We've expanded the medications and we've expanded our approaches. So we really emphasize the diet and the exercise right away. And we do a lot of cognitive enhancement treatment. Anything you can do to improve their ability to think and to participate in care makes everything else get better. So we always talk about top down control of your psychosis. So psychosis is not only delusions and hallucinations, but there's a very strong component that is cognitive and that is also the negative symptoms. The inability to get started and working on those cognitive symptoms allows the person become more aware. So let's say they're still having auditory hallucinations. That's a processing problem. They're actually hearing those voices in their brain. But if you can improve their cognitive abilities, they can recognize that as being internal and therefore not listening to voices. And also as their cognition improves and often, you know, get more involved in social situations because what it takes, the most difficult thing anyone ever does in terms of cognitive abilities is social interaction, especially with multiple people. You need a lot of processing speed. So that tends to be diminished in these illnesses.
- [13:12]
C
These are all great points. Now what did you do with your son? How did you approach that with all these things that you've just mentioned?
- [13:21]
B
So with Daniel, we did a lot of cognitive enhancement treatment, did a lot of exercise. All of these things improve cognitive ability. So there's the feedback as far as the medicines, and also we did cognitive behavioral therapy, because once you can think about your own thoughts, you have a thought that one tenet. And I'm sure you've heard this before because you've been doing serious mental illness before. You say, never challenge a delusion because a delusion is a fixed false belief.
- [13:48]
C
Yes, I have definitely heard that.
- [13:50]
B
Well, actually, with psychosis informed cognitive behavioral therapy, you can start to edge onto the delusions and start to challenge them. As you're doing that, they're more in touch with reality and their abilities improve. So that's what we're using more of in terms of the medications, you know, the medications for clozapine side effects, they're old. One of the modalities that we use a lot of for the salivation that's relatively new, is we use good old Botox.
- [14:21]
C
Really?
- [14:21]
B
Yep. Botulinum toxin. So you can go to an ear, nose and throat doctor or a neurologist typically, that specializes in taking care of Parkinson's patients because they have problems with the salivation and they'll often have aspiration. You just inject the salivary glands. You start low dose. Everyone's individual. These doctors are really adept at this. Basically, Botox lasts as long as the salivary glands, and they turn over about every 90 days or so. So you go to your ear, your nose and throat doctor, and you get injected every three months. And that's really important if you're doing Closby, because as it turns out, aspiration and pneumonia is probably the most dangerous thing about Clozapine and that you really have to pay attention to.
- [15:06]
C
Did you have any issues at first with him agreeing to do any of this? One of the issues I've heard from several different people is when someone is in psychosis, they are unwilling to take any help, get any help, and they just don't want any help. So how did you deal with that? Was that an issue at all?
- [15:26]
B
Anosognosia. Now, we were fortunate. Daniel was 15 when he got sick, which is a bad prognosis. Right. The earlier you get sick, usually the worse the prognosis. That's why we were told, you know, mourn the loss of your child's expectations. Of course, that did not turn out to be true. We'll talk a little bit more about that. But fortunately, we were able to get guardianship, which we did, which we maintain to this day have never used it, because Daniel has always been aware of his illness. He skipped clozapine once, one time by mistake. He just missed it. And he felt horrible the next day. That was enough for him. So he's always been aware of his illness. Anosognosia is a really interesting condition. So we always talk about unawareness of the illness, but it's actually more complicated than that, you know, so Daniel does have some anosognosia, because when you're talking about anosognosia, it's actually also refers to your ability to self assess. And people with psychosis are notoriously bad at self assessment. He underestimates some of the things he can do and grossly overestimates some of the things that he can do. And that remains a problem. You always have to work on his self esteem and you know, this affects everyone. It also affects their ability to interact with other people because they will not get a good read. What we call theory of mind. They don't usually understand exactly what someone else is thinking.
- [16:51]
C
Can you expand on how they view that and how they interact that way?
- [16:56]
B
They will if they're very psychotic at the time and their self esteem is poor, you know, they're going to look at someone and they're going to interpret, you know, their interaction in a very negative fashion. Ideas of reference, you know, they're going to hear something and that's walking by. The other person may have been in the conversation completely unattached and not even aware of the patient. But the patient say, that person just said I'm fat and I'm terrible. It's a real cognitive problem, you know, anesthagnosia. It's interesting. It does get better over time. So clozapine, the one nice thing about it is it changes the trajectory of the illness. And a lot of kids who have had really terrible antipsychotic disease where they've absolutely no concept that they're sick and think everything is hunky dory and why would I ever take any medicine have over the years gotten to accept Clozapine. So the beauty of Clozapine is it quiets your mind as opposed to deadening it. And if you follow kids that have been on Clozapine and you've got them unestablished doses, the acceptance rate with Clozapine is in the high 80s. Now if you look at our data, we have at one year and we now have over 200 patients, clozapine, our acceptance rate is in 94%. Yeah. No. So it does, it does get better over time. And if it doesn't and there are a lot of kids that so sick, then we use court mandated treatment. So that's the ultimate way of getting past anosognosia. Not where I start. I usually start with, you know, Javier Amador's approach. Reflective listening, you know, empathizing, trying to agree with them, partnering with what they want. But sometimes that doesn't work and you don't want to. You know, these are illnesses that need to be treated. It's a brain illness. You know, if you had someone like grandma with Alzheimer's disease and she didn't want to take her insulin because she said she doesn't need it anymore, there wouldn't be a second thought. Of course you'd give her insulin. And the same applies to this population.
- [19:04]
C
Yes, absolutely. We have to find a way to take care of everyone. Here's an unfortunate but interesting fact. I've spoken with those that are autistic and those that deal with serious mental illness. One common thing they both have told me is some have taken up to 10 years to get their life completely figured out.
- [19:25]
B
Yeah, that's what I'm trying to stop. So we have an approach, you know, called ease. I wrote a paper with a guy by the name of Matri Keshavan who loves acronyms. E is early because all these illnesses, all these psychotic illnesses are to a certain extent genetically based, neurodevelopmental, and when not appropriately treated, neurodeterative. We know that untreated psychosis or poorly treated psychosis leads to loss of brain. Henry Nazarelo's former whatchamacallit chair, I guess chair, president, probably president of the apa, always likes to say that psychosis is like a slow moving stroke and you lose about 1% of your brain per year. Early treatment with the most effective medication, that's all I'm proposing is the way to go. I mean, no other field would this be controversial. And ozapine is the only drug that has the FDA indication for resistant schizophrenia and loosely defined as, you know, people that have failed two other antipsychotics without really getting even close to their former status. It's the only drug that will work in any significant percentage. There's always the anecdotes where someone does get better because there's literally trillions of ways to get the psychosis. But if you look at statistics, it's well, less than 5% will be successful with any other drug, whereas with Clozamine, just by Closbine alone, that group will get 50 to 70%. So a decade's ridiculous because people have failed earlier than that. I can't argue, I don't have the data to argue that if you get started on another antipsychotic that's not as difficult to manage because clospine is a lot of work. You do have to manage the side effects. Some of these antipsychotics really don't have appreciable side effects. And if they return to their former status, they go back and they are fine. I can't argue with using that.
- [21:20]
C
That makes perfect sense. You are a strong advocate for this. What are your thoughts?
- [21:25]
B
Would I do that? No. And the reason is because usually that same group will respond to very low doses of closbine, which then will have less side effects. And we know clozapine is, as I said, distinctly useful at changing the trajectory of the illness. And we don't know if these other drugs will hold them. Because what you've also heard, I'm sure, is, oh, that drug used to work great and then it stopped because it's a partial response. And I don't take this with tremendous data because the data really doesn't exist the very first treatment. But I would use clozapine and I have used clozapine right at the inception of illness if I could. Daniel. It turned out it was a year and a half before he started clozapine.
- [22:08]
C
So you have strong beliefs that it's just as good to start out right from the very start.
- [22:13]
B
We've had people start much earlier. I just started a fellow with bipolar with psychosis within two weeks, the start of his illness a few months ago, and he's on a tiny dose of clozapine with no side effects. And I've done this multiple times with other people. I'm the literature. Unfortunately, not many other people are doing it. There's a study that's coming out that Dr. McCabe in King's College in England that's going to repeat a lot of this in first episode psychosis programs. But it's also very interesting, your point about the 10 years. The most successful first episode psychosis programs are the programs that quickly go on to Claspine. And this is just a paper that just came out also King's College in England. You know, this is the wave, I believe, of the future. And we're starting to get more and more inertia. 10 years is way too long.
- [23:05]
C
Yes, I definitely agree there.
- [23:07]
B
You lose brain and you know, the recovery, you can still get really good recovery, but it's never quite. I shouldn't say never, but it's almost never complete because there's never a never, as I keep finding out.
- [23:21]
C
Okay, you've been doing this a long time no matter what's going on, there's always a bump in the road. What's one of the bigger challenges you've had to face? Then you kind of finally figured it out and moved forward?
- [23:35]
B
Ah, you know, I haven't figured it out yet because probably the biggest challenge is engaging the psychiatric community. And that's something that we're still working on and getting an adequate workforce to basically take care of these kids. Probably the biggest obstacle besides that is the finances of it all. It's a lot of work and I think that's also why it's really tough to engage people because treatment of serious mental illness is very undervalued. Again, I made, I made a very good livelihood when I was a nephrologist and you know, I'm working just as hard doing, taking care of psychotic individuals as an internist that I'm actually making about a third of the amount that I was making back then. And most of it is non insurance based. Insurance will not pay for that. So at this point, yeah, I think our biggest obstacle is the inability of the insurances to recognize the value in treating serious mental illness with a comprehensive wraparound approach and pay for it because, you know, it's great. So I live in upper Westchester, northern Westchester, right on the border with Connecticut in Westchester county, right next to Fairfield in Greenwich, Connecticut. You know, I'm Bedford. It's a beautiful area, it's incredibly affluent. I'm probably one of the poorer people that live there and I am not poor by any estimation. So we have that group that will pay and they paid literally hundreds of thousands of dollars for inadequate care. So we've started something called Doramine the last two years to you know, get, this is the biggest bump in the road, access to our treatment plans. And how can I get access at a reasonable cost? Well, we decided we would use nurse practitioners because they're a little more economical than physicians. You know, the rates are lower and their income expectations are lower because they don't come with the half a million dollar loan from medical school that most of the early psychiatrists come out with. And so I don't blame the psychiatrist for wanting to be paid.
- [25:39]
C
No, absolutely. They spent a lot of money in college and they want to get paid. So how is it all working and how are you training them?
- [25:46]
B
So we've started with this group and I've trained four nurse practitioners. Three are employed right now. I supervise them regularly. I've got the two original founders who had worked for a Firefly and Athena Health and roles of I think chief technical officers and the chief operating officers in those roles, but they had loved ones with serious mental illness. So this is more their passion. They understand the finances. And we are slowly trying to get. And slowly getting insurance companies to value it, and they're valuing it probably too low. And we are far from a profitable enterprise. In fact, we're still on the bleeding money side, but we're starting to see more and more. And also because we have the data. And the reality is, is it all comes back to our health care system. Right. So private insurance is, if you do poorly, you can't afford to pay the premium. You go to another insurance company. If there was a universal care, you would see that just treating people with clozapine. And they've looked at this in the VA system, they've looked at this in a Medicare and Medicaid environment, they've looked at this in England is a tremendous cost savings because instead of the revolving door of hospitalizations, it costs more to use clozapine. It's true. As an outpatient, the drug itself is dirt cheap. And you stop the hospital and that's the usual cost. So coming into my practice the year before, 94% of our individuals. 94, 93, actually. Sorry, I don't want to exaggerate. Were in the hospital at least once, and most of those were multiple times. After coming into the practice, we've only had 15% go back in the hospital. And that extends from one year to as long as 15 years. So much longer periods of time. So the revolving door stops and expenses go down.
- [27:38]
C
With the expenses going down, the revolving door stopping, you would think that would be a situation everyone would love.
- [27:46]
B
The problem is getting all the individual payers on board. That's our pride. Biggest bump in the road, you know, because it's the affordability issue. People come to me and you know, if you can afford it, great, that's wonderful. And then they can get care. I've trained these NPs, I supervise them. They do a great job. My wife and I are over 200 patients. We're personally. And I always like to put this on every podcast, not taking any new patients because I'm 68 years old and I think my mission right now is to take care of who I've got and train other people because this approach works. Oh, let me finish my approach. Ease. So early use of closbi A is assertive management and a wraparound service. Not only giving medicine, but we talked about before, diet, exercise, cognitive behavioral therapy, socialization. I have these Kids come to my house. Normalizing relationships, taking it out of the medical environment. The worst part of it, people will tell you, is what's the worst part of the psychosis is the loneliness, the being alone, the isolation. So we really work on that. And then slow, when you introduce your medicines or you titrate off another medicine, take your time, it really does help tremendously with the side effects. And also slow because as you already mentioned, right, it takes 10 years sometimes for people to get to me. Guess what? It's going to be a slow, long road. I always tell people it's not a sprint, it's a marathon. And then e. Engagement. We engage everyone. We don't only engage the patient, we try to engage the family. Often the families are left out of the cure of serious mental illness and that's, that's just a sin. Or as I like to say, sorry about my Judaism, Shonda Ashanda, which is even a bigger shame. And, you know, you gotta engage, you gotta use all the resources you possibly can and you should never let hipaa, you know, something that gets in the way. Again, coming back to the anisia, I've had kids tell me, don't talk to my parents. You know, I'm not permitting it. HIPAA actually gives the doctor permission to use his best judgment when the patient is, as we would say, not of their right mind. So if you think the patient is clearly in psychosis and you have met the family and they're not toxic, and some families are, and sometimes I don't say it. I mean, again, there's no absolute. But most families are out there trying to help their kid. And I engage the family.
- [30:16]
C
Yeah, that makes total sense. In closing, what do you think is important that our listeners hear on what you're doing and what they need to know?
- [30:24]
B
So as I said, the nihilism in psychiatry, the belief that, you know, your kid's life is overwhelmed. My son is, you know, a stand up comic, which of course most people with schizophrenia are, you know, has a decent career in New York City and has finally engaged the serious mental illness community because they need to see. So we were just at an event in Vallejo in California, I think, south of San Francisco, and Daniel would get up and did a 20 minute set of stand up comedy. Then we showed our movie, which is into the light meaningful recovery, a little plug for that. And then I do my usual talk and the sponsor said, now you know what schizophrenia can look like. That's what people have to understand. It's not easy. It really is. Not easy. But again, any other illness you would use the most effective treatments. You pull out all the stops. Schizophrenia kills people, psychosis kills people. The suicide rates are up around 5%. Ospium reduces that by 90% or 80 to 90% or so. I don't want to exaggerate again, you know, long term survival. The Fin20 study, the entire Finnish population where they they have actually a national health care system and a national database. So they have less than 6 million people. They have 62,500 people with psychosis and they followed them for 20 years. People not on antipsychotics that have psychosis, 46% had passed away. Almost 50% mortality. People on a non clozapine based antipsychot, almost 16% or no, no, it's 16%. 25.8% died and then with clozapine it was 15.8%. Still not perfect by any stretch of the imagination, but a hell of a lot better. So my message is don't settle. It's not good enough. Demand. If your kid is great on whatever antipsychotic they're on, fine. But keep an open mind. As I said, these illnesses tend to progress, demand the best treatment. That's all on the asscape and that is a clozapine based regimen. Coming out in the next few months will be our fifth edition and it's going to be an extensive disposition. I've gone through each book. At first I just wrote it for the general public. Each edition I've kind of increased references and made it not only for the general public but also for the physician. We've expanded the book originally to this little thing that was a hundred pages. Now it's about 500 pages, probably too long. So it's meaningful recovery from schizophrenia and serious mental illness with clozapine. That'll be the fifth edition. It'll be out before the end of the year. And you share that with your treating psychiatrist. That's it. Just demand the best for your kids, that's all I'm saying.
- [33:07]
C
Absolutely. Well, this has been great, great conversation, great information. I really appreciate you taking the time to join us today.
- [33:15]
B
Tony, thanks so much. Thanks for taking the time with me.
- [33:18]
C
Oh, it's been my pleasure. Thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at WhyNotMe World. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world.