In this episode of Inside Schizophrenia, our hosts tackle the topic of early onset – or childhood – schizophrenia. Host Rachel Star discusses her personal experiences with schizophrenia symptoms as an adolescent and Dr. Joseph Gonzalez-Heydrich from Harvard Medical School discusses some of the latest research. Listen in now!
About Our Guest
Joseph Gonzalez-Heydrich, MD is Director of the Developmental Neuropsychiatry Clinic at Boston Children’s Hospital and an Associate Professor of Psychiatry at the Harvard Medical School. He did his undergraduate and medical school at Johns Hopkins, his residency training at UCLA, Stanford, and Boston Children’s Hospital. He has extensive experience designing and running clinical trials and other scientific studies with children who have psychiatric disorders co-occurring with developmental disorders or epilepsy. He has also assembled collaborations to develop computer applications to help patients and families facing serious psychiatric or medical illnesses. These include a series of computer games and technological toys designed to build emotional strength in patients as well as typically developing children. Most recently, he has brought together a multidisciplinary effort to study childhood psychosis and the developmental antecedents to Schizophrenia at Boston Children’s Hospital.
Computer Generated Transcript for “Childhood Schizophrenia” Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: Welcome to Inside Schizophrenia, a look into better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Rachel Star Withers: Hello, listeners, could a change in your schizophrenia treatment plan make a difference for you? There are options out there you might not know about. Please visit oncemonthlydifference.com to find out more about the benefits of once monthly injections for adults with schizophrenia. Welcome to Inside Schizophrenia. I’m Rachel star Withers here with my co-host Gabe Howard and, Gabe, I’m so excited about today’s episode because we’re going to be exploring schizophrenia in children, sometimes known also as early psychosis, childhood schizophrenia, very early onset schizophrenia, and schizophrenia childhood type. So you get all those written down?
Gabe Howard: It’s amazing to me that there’s all these different names for what is essentially the same disorder. You can understand why people are having a hard time understanding what’s going on when we have five names for what is effectively the same thing.
Rachel Star Withers: And it has been changed over and over and confused with other disorders. Yeah, and that’s kind of what we’re gonna get into is how it’s all meshed together and it’s hard to tell what is what.
Gabe Howard: Before we get into all of the research and the technical side, and of course coming up later on in the show we have an expert who’s going to answer some of these questions for us. I have a question for you, Rachel. Were you diagnosed as a child?
Rachel Star Withers: I was not. I was first diagnosed when in my early twenties when things were like really spiraling out of control. When I was growing up, and I grew up in like the Deep South, very religious, and in the country. So it’s not like I didn’t really grow up around other kids. Like I did but it wasn’t you know like a city sort of situation. So I don’t think my parents really knew how a kid was supposed to act. There were no big warning signs with me.
Gabe Howard: Did you have hallucinations when you were a child?
Rachel Star Withers: Oh yes. As long as I can remember I’ve had hallucinations and the first ones were I always saw faces. And things like faces in the trees, in the carpet, just in the wall, the ceiling. They would appear and like always scary faces. It’s not like happy. No happy butterflies. They were like kind of demonic, frightening creatures which goes back to being in the religious south. You know when I did tell people about it, they’d be like, “Oh well, that’s Satan manifesting.” Okay, yeah.
Gabe Howard: You told adults, “Hey I’m seeing scary evil demonic faces.” And they were just like that’s normal?
Rachel Star Withers: Yeah I think it probably freaked them out or they just thought hey this little kid is just really imaginative. And you’ve been sitting in church listening to the preacher holler for the past two hours about hell and brimstone. So of course, you know, everyone’s probably seeing scary demons.
Gabe Howard: Religious stuff aside how do you know the difference between a child’s imaginary friend and a child’s hallucination? I know lots of children who have imaginary friends who do not have schizophrenia.
Rachel Star Withers: Oh absolutely. And I think growing up it kind of freaked some people out that they don’t know how to deal with it. Like if your kid is coming with an imaginary friend and you’re like oh OK you know we’ll play along. But, well yeah, when do I stop playing along? When is my child too old for this? The same thing like when is my child too old to believe in Santa? So now my kid has hit 13 and they’re still talking to somebody imaginary. Maybe? Maybe this is bad?
Gabe Howard: You raise a really good point because some of this you know that the Tooth Fairy, the Easter Bunny, Santa Claus.
Rachel Star Withers: Yeah.
Gabe Howard: We want children to be fanciful. They always see and hear and do things that the rest of us don’t. As part of their imagination, as part of normal development. So now you’re a parent and you suspect. So now you Google to try to get some help for your child. What will they find?
Rachel Star Withers: So scariest thing when I was researching this episode I googled childhood schizophrenia and the first thing that comes up is the wikipedia link and it’s a picture of a child holding a gun. Like I got so mad. If you would have been on Twitter at the time when this happened, I just went on a little Twitter rampage of this is stigma and ridiculous. Because for me it’s like a little 10 year old holding a gun at the camera and we just last episode talked about violence and schizophrenia and the stigma and just how people see it incorrectly. And this is like actual kids. Stigma towards kids in mental health. That really blew my mind that you know even on the Internet we have that stigma towards children and getting help for mental illnesses.
Gabe Howard: And this puts parents in a very peculiar situation because they’re going to look at this picture of a 10 year old with a gun and then they’re going to look at their own child and they’re going to think, “Well, all I have to do is make sure that my child is not violent.”
Rachel Star Withers: Mm hmm.
Gabe Howard: Ipso facto my child does not have schizophrenia.
Rachel Star Withers: In today’s times we have the situations of so many school shootings and I feel like you have two sides of the parenting. You have the one side that’s going to be over protective and oh my gosh I don’t want this to happen and then the other side like I don’t want to say anything and have my child labeled. So it’s either I think go crazy and get help or don’t get any help at all.
Gabe Howard: That’s really an interesting point that you make that because of the stigma surrounding this, people are afraid that if they suspect that their child might have schizophrenia, they’ll get labeled as such even if they don’t. So people will become fearful of their child. Maybe their child will lose friends, or social connections, or standing in school, things that their child needs to develop normally if they suspect their child has schizophrenia. And if they’re wrong, they’ll put their child back a little bit and that of course is assuming that parents recognize it at all. How did your parents react to that knowing that even though you were symptomatic as a child they did nothing? What was that like?
Rachel Star Withers: Well, we’ve I’ve actually never asked them that because that sounds like a really sad question, Gabe. Why would I put my parents in the spotlight? I was a little weird kid and I think all kids are weird though and I was the first child and I just I don’t I don’t blame them or anything because I feel like they were amazing parents and you know Rachel’s acting weird. Let’s let’s go outside and play and that’ll help her. So I had a very awesome childhood and things.
Gabe Howard: It’s awesome that it all turned out OK, but you and I both know that it doesn’t always turn out OK.
Rachel Star Withers: No.
Gabe Howard: You know sometimes waiting too long can lead to a not so great outcomes. We’re talking about society not helping people who are sick.
Rachel Star Withers: And I had a family situation where my mother pretty much worked from home. My father worked full time and it was just me and my little brother. So we got a lot of personal attention. So even if I had, let’s say gotten worse, I feel like people would have noticed pretty quickly. So let’s actually talk about what is childhood schizophrenia? The simple definition is it is when a child interprets reality abnormally which I think is all children. Isn’t that all of them?
Gabe Howard: Well, but it’s abnormally.
Rachel Star Withers: Yeah.
Gabe Howard: But you’re right. Doesn’t that make it difficult? You expect a child to get it right?
Rachel Star Withers: Right. Yeah. So the mental disorder of schizophrenia overall. OK. They used to see it as different classifications. Now it’s considered a spectrum disorder similar to autism. So the criteria for diagnosing a child with schizophrenia is actually the exact same as a teenager or adult. So early onset of schizophrenia is ages 13 to 18 and if it occurs between age 7 to puberty it’s childhood. So I think that’s the issue, too. We got like OK well which one is it? And then they’re also trying to just call it early psychosis or psychosis in children which is even a more bigger umbrella term because I feel like that could cover bipolar and all the other disorders that kind of have hallucinations in it. Which autism has hallucinations and Down Syndrome also. There is not a definitive test and they’ve even done studies where they think schizophrenia can appear in a child as early as three months old. I have no clue how in the world you would figure that out. Like a 3 month old is just kind of there. But I just thought it was interesting that they think that’s how young that schizophrenia can be observed in a child. The only difference is schizophrenia for children versus adults is the delusions tend to be broader so they don’t necessarily have like a voice telling them specific things to do. It’s more they’re going to hear sounds, knocking, ticking, voices that are like calling their names, that necessarily don’t make sense. The visual hallucinations tend to be like flashing lights, seeing shadow figures. So that’s always like that just sounds to me like normal kids. And my little kid comes and tells me like, oh they’re all these flashing lights it’s an alien you know attacking. I’d be like OK cute you know you must have saw that on TV but yeah.
Gabe Howard: Children just have a real difficult time processing anything as an adult. You know, take for example all of the kids cartoons that have like sexual innuendo in them.
Rachel Star Withers: Oh I remember as a young prepubescent girl like we would watch musicals like Grease and I loved Grease as a kid it was so happy and fun and I remember they showed it to us in school. And now if I watch it, I’m like oh wow that’s really inappropriate. There’s so many things in that movie, that older movie, that is just like Oh oh that’s there’s a lot of sex jokes in here and yeah we miss things as kids. Like we interpret things completely different. If you don’t understand something you just kind of either gloss over it or you make up your own reality to it.
Gabe Howard: But that’s not an example of schizophrenia that’s just an example of getting something wrong. And again that’s something that happens to adults.
Rachel Star Withers: Oh yeah.
Gabe Howard: So now we go all the way back and like you said we’re not even necessarily talking about 15 year olds, we’re talking about 10 year olds or 5 year olds.
Rachel Star Withers: And remember, Gabe, even trying to go out there and get the right facts to learn about this disorder you’re met with a lot of confusion and a lot of stigma and I think a lot of stigma also can make you feel like, “Well, if my child is wanting you know to shoot up the school like in this picture that means I’m a bad parent and I’m not. I love my child.” And it’s just a lot of confusion and I think fear when you are looking at this disorder.
Gabe Howard: And we should probably address how common this is because I imagine this is not very common which means it’s not like you can just ask your mommy group, or your father group, or your own family members. I mean where do you go to get support with the people that you know in real life?
Rachel Star Withers: One issue when it comes to diagnosing this is that schizophrenia and psychosis in children is so closely seen from the outside as also autism. So there’s a lot of kind of confusion there where a lot of kids get misdiagnosed. They put them down as autistic and they’re really not and vice versa. And with autism, children are seen to be very internal, going inside of their heads. They don’t pick up on like normal social cues. They engage differently. Schizophrenia is they withdraw. They go inside themselves. They’re not responding correctly because they’re hallucinating. That sounds exactly the same to me. I feel like if I had two kids going through two different things, but that’s how they’re reacting, I would assume they’re both either autistic or schizophrenic. But you know there’s a very big difference in what the kids are seeing. We’re talking about a 10 year old though and they’re telling me they’re seeing shadows or lights and that’s so vague.
Gabe Howard: Do you think that the public is more accepting of a child with autism or a child with schizophrenia?
Rachel Star Withers: I don’t think anyone is scared of an autistic child shooting up a school. Is that a little too hard to say though, Gabe?
Gabe Howard: No I think that it’s
Rachel Star Withers: Ok, I was just being honest.
Gabe Howard: No. I think it’s a very
Rachel Star Withers: Ok.
Gabe Howard: Fair point.
Rachel Star Withers: Ok.
Gabe Howard: You know schizophrenia like you always make the joke it’s got a Z in it. It’s a scary sounding word. When we think of autism, we think of you know cute children trying their best to love their parents. And can you kind of speak to that a little bit because you don’t have the warm and fuzzy diagnosis?
Rachel Star Withers: No. And I actually had a family member who had very very serious autism who is no longer with us who is very young. And autism, it’s a very hard thing to deal with. We go back to that spectrum disorder. There’s a big spectrum. And unfortunately my family member was very very held back mentally by it and I don’t think anyone was ever scared of him that he would pull out a gun. You know no one was ever scared like that. You were more scared for him. You felt bad, you were worried about him. Whereas schizophrenia I think you’re gonna be like oh I don’t want my kids near him. I don’t want my kids near her like that. That’s gonna be the kid that just starts like stabbing people. But there’s fear that autistic kids will be disruptive in the classroom so there’s stigma on both sides. Another thing is that we go back to that whole getting a diagnosis for my child. There’s a lot more support and just help and programs for autism, you know. So if I’m googling, you know, help with psychosis there’s almost next to nothing for children where autism there’s so many programs. There’s books, there’s these computer games, there’s just so much stuff that you like oh wow there’s a huge support community that does not exist for psychosis in children even though it’s so closely related. As a parent that would worry me too. I’d be like well if I have to get a diagnosis how about the safer one even if it’s wrong I would get a lot more help.
Gabe Howard: It’s a really good point. There’s nothing to definitively prove psychosis in anybody or schizophrenia in anybody, let alone children. It’s all self reporting. So this does make it difficult and that does mean that you know unfortunately human error can get involved and a parent can steer their child, steer their provider into the safer diagnosis and it’s always difficult to compare and contrast illnesses. I don’t want anybody to think that we’re saying that autism is better than schizophrenia or vice versa. It’s just a conversation about how society is seeing these illnesses and why it makes it difficult to get the right diagnosis and the right help for a child when there’s all of these external factors.
Rachel Star Withers: And coming to getting the right help, right now with psychosis for children with schizophrenia the only help, the only treatment is the exact same thing for adults which is antipsychotic medications and which have really intense side effects. A lot of them aren’t allowed to be given to children to start with. But a lot of the side effects I have now, I would not wish on anybody else, but especially not a child. So you have that whole thing playing as well. OK, if I give my child this certain things might become a lot worse. And your other treatment options are going to be like social programs, individual therapy, a lot of family therapy so everybody in the family can kind of jump in. The treatment isn’t really a specific, OK I just give them this pill every day at this time and everything’s going to be OK.
Gabe Howard: Well let’s talk about that for a second because as you know in adults, there’s a lot of controversy about whether or not people should take psychiatric medications. There’s lots of scary stories. And now we’re talking children. So now a parent has to decide if they want to give psychiatric medications to their child knowing that adults are having this giant discussion. What is that like for a parent?
Rachel Star Withers: For just me, and you’ll hear other schizophrenics say it too, it is as if you’re playing Russian roulette with medication. So you’re constantly having to try things, adjust levels. And now we’re dealing with a child who isn’t very good at voicing what’s happening and that parent is going to have to be like really on top of things and charting and it’s just a lot. Because it’s going to fall on the parents when it comes to psychosis in children.
Gabe Howard: And it’s more likely than not that their friends and family in the general society is really looking down on them. Oh you don’t want to raise your child, you just want to give them a pill. This isn’t to say that children with schizophrenia shouldn’t be on medication, these are just the kids of things that parents worry about. There’s just an incredible amount of stigma in the treatment of schizophrenia.
Rachel Star Withers: Yes. And when I was researching all of this I went into researching specific therapists who deal with schizophrenia and psychosis and they’re all a lot more expensive than let’s say a normal therapist. So there’s also just the cost of all of this is insane, you know. Well one of the treatment sites suggested family therapy once a week, child therapy twice a week, you know. And we’re talking one hundred dollars a pop. Like that adds up on a family really quick. So you want to give your child everything, you want to help them. But there’s also that cost factor of trying to do all of this stuff and a lot of it’s not available in your area. If you’re in a big city you can probably find a therapist who specializes. But I mean, I’m out in South Carolina. No one came up on my google search.
Gabe Howard: And I think that it’s also important to remember that families are all structured differently. For example you can have a single parent family with three children. Well that means one child is taking up the majority of not only the financial resources but the single parent’s time. And then you’ve got other families that you know are two parents with one child. Well and of course we all understand the difference in health insurance and financial resources. And as you mentioned the difference between living in a big city and a rural area and it even varies state to state. We will be right back after this message from our sponsor.
Rachel Star Withers: It can sometimes feel like another schizophrenia episode is just around the corner. In fact, a recent study found that patients had an average of nine episodes in less than six years. However, there’s a treatment plan option that can help delay another episode. A once monthly injection for adults with schizophrenia. If delaying another episode sounds like it could make a difference for you or your loved one, learn more about treating schizophrenia with once monthly injections at oncemonthlydifference.com. That’s oncemonthlydifference.com. Thank you for listening to our sponsors message. And we’re back talking about violence and schizophrenia.
Gabe Howard: We are back talking about schizophrenia in children. Is there good news in all of this? What’s the success rate for a child who is diagnosed early and gets the intervention and help that they need? How do these children end up? Because I believe that society thinks that all of these children end up institutionalized or as criminals or in prison. What are the actual stats on this? Is there hope for these children?
Rachel Star Withers: It’s just like any other medical situation. If you have the right diagnosis and the right treatment you’re going to have a lot better outcome. Me myself like I wasn’t diagnosed till later but once I was that was such a huge weight off my shoulders for when I knew I wasn’t demon possessed anymore. Oh but like oh I have a real thing that other people in this world have and I knew how to at least had a road to go down for treatment. I knew that I needed to talk to a psychologist psychiatrist. Like I knew what type of doctors what type of medication I was going to need what type of therapy. And there is no like oh well this is the exact thing you need to do that’ll work for you because believe me over the past 14 years I’ve tried so many things and had to adjust. But at 34, about to be 34, Happy Birthday to me, things are going really well I think I’m as sane as I’ve ever been. I don’t know. But I have a really awesome life and I’m very lucky for that. So I think it’s just the outcome is whatever you want it to be. And just being able to support your child and push them to what they want to do and find ways. Yes it’s gonna be harder but you can totally find ways.
Gabe Howard: You can find ways if you get the right diagnosis and the right treatment. Just to clarify right?
Rachel Star Withers: Yes.
Gabe Howard: You can’t find the right way magically. That’s the problem with all of this misinformation and all of this stigma it lead you astray.
Rachel Star Withers: Yes, that’s correct, Gabe.
Gabe Howard: Let’s take a snapshot of your personal story, Rachel. Before you had the right diagnosis, before you had any treatment whatsoever, you went through a lot. Tell us what happened before diagnosis to help you with your hallucinations.
Rachel Star Withers: I remember multiple times in my life growing up in the church, going to different church leaders over me youth pastors things like that and talking to them about what was happening and a lot of the times they would just pray with you and suggest you know what to read in the Bible and that was it. And it kind of escalated to the point where I was at a Christian school at age 17 and they actually did an exorcism on me and it was not as cool as the movie. My head did not spin around and I didn’t you know throw up puke everywhere. So little let down on the build up of that, just saying. But that’s really scary that they did that to a 17 year old but that was their way of helping me. And they absolutely knew. I mean we’re not talking I was in the sticks, we had the Internet starting and this was a very large school.
Gabe Howard: I love your sense of humor and I love the fact that you’re well enough to look back and you know handle these things the way that you do. But if we’re being honest this could have turned out significantly worse for somebody in your position a vulnerable person with an untreated mental illness.
Rachel Star Withers: Yes I have a great sense of humor. I tend to be very upbeat about schizophrenia and mental disorders because so many people aren’t. And inside I might not be like super happy but this is my way of dealing kind of thing. So I did want to point that out there just as I make jokes about these things and other people might have went through them and think this is not a joke. Just so you can understand. But that was really hard, that exorcism. I didn’t talk about it for over 10 years because I was so embarrassed like who in the world has an exorcism? But I just did not want anyone to know. So it’s not that that didn’t affect me. It affected me really bad for a lot of years. And it took a long time to deal with that. So yes if you have people that are trying in their own ways to help but are actually hurting it really can set anyone back that has any sort of medical problem not even just mental.
Gabe Howard: And just to be clear it did not help with schizophrenia.
Rachel Star Withers: Yes to be clear my exorcism did not work and it was three days long. OK. So this was not an hour situation like in the movies. Got to wrap those up quick. A three day long exorcism and my hallucinations came back the next day and they pretty much gave up on me. They said I let Satan back in.
Gabe Howard: Ok. So there was a lot of blaming of the person?
Rachel Star Withers: Oh yeah.
Gabe Howard: Who was sick. And none of this, and I don’t think you think so either, we’re not trying to shame religion or shame religious people, this is just an example of where people didn’t understand and they used what resources they had available. But they did the wrong thing. They didn’t use a medical based model to treat you because you didn’t have a diagnosis. They didn’t know what to do. Now let’s compare that to what happened when you got to a doctor. How did your life change after you got a diagnosis and you moved forward?
Rachel Star Withers: Anyone out there who you know is looking to get a psychiatrist psychologist looking to go down this road you might have to shop around. I do want to say that because I’ve been to so many different therapists and medical professionals across the board. If you do have to find one that works for you. But the good thing is that you at least have a game plan. So I knew right away like OK I’m going to go I started talking to a psychologist that psychologists put me in contact with a psychiatrist and them working together put me on a medical treatment plan. In addition to this talk therapy that I was doing so yeah. And it was OK if that didn’t work this week then we need to work on something else we need to change something. Not, all right, we give up, we tried that one thing.
Gabe Howard: And that really is the difference. You now had a treatment plan. So as scary as it is to take your child to a doctor for this the treatment outcomes are significantly better. And as people who listen to all of these episodes know and people who know your work, Rachel, you really do have an exceptionally high quality of life. I mean you were in the movies for Pete’s sake.
Rachel Star Withers: I was, it’s pretty cool. I think now, Gabe, is a perfect time to bring on our guest. Today we’re talking with Dr. Joseph Gonzalez-Heydrich. He is the director of the Developmental Neuro Psychiatry clinic at Boston Children’s Hospital and an associate professor of psychiatry at Harvard Medical School. Welcome, doctor.
Joseph Gonzalez-Heydrich, MD: Thank you, Rachel.
Rachel Star Withers: So at the Boston Children’s Hospital in the Developmental Center, what is it that you do?
Joseph Gonzalez-Heydrich, MD: I’m a child psychiatrist and I evaluate children thought to be having very serious psychiatric problems then treat them. Hopefully you get them feeling better and back on the developmental on their developmental course again.
Rachel Star Withers: So when you say psychiatric issues, what would some of those be?
Joseph Gonzalez-Heydrich, MD: I would say since 2001 or so I’m mostly concentrating on children who are showing early signs of psychosis. Those are the children that are generally my new patients in the last I guess eight years since I’ve been working in this area. I would tell you that I’ve never worked harder or seen children who were more having more you know more severe problems and yet sort of the partnership with the families and and the kids themselves is really very strong. We’re all pulling together trying to help them feel better. And also I’m involved in research to try to understand why this is happening to them and find ways that are more effective than what we have now to really get them back to feeling better and back on a different developmental trajectory.
Gabe Howard: Rachel and I were just having a big discussion about parents are afraid of this diagnosis. They’re afraid of psychosis because society is afraid of this in adults and nobody wants to stigmatize their child with this. Are you seeing that in your practice where parents are rejecting the diagnosis or not wanting to work with you or are fearful of it?
Joseph Gonzalez-Heydrich, MD: Actually by having the kids come to see me often the parents are looking for an answer and have self blamed or blown off by the professionals often before that. And part of that is because psychosis in children is very confusing and difficult. A lot of kids will have just as far as normal development will occasionally have think that hear a voice their name called developmentally normal fears and and whatnot. And then distinguishing those from psychotic symptoms is hard and it’s something the field has been grappling with. So the kids are often been complaining of intrusive voices and images that are really scary and frightening and distressing to them for a long time. First of all, they also feel a stigma and often don’t tell anyone about it for a long time and then when they do tell their parents about it and the parents go to get evaluated an evaluation often as child psychiatric professionals we try and find any possible other explanation. In truth it is hard to distinguish what is a psychotic symptom. You know for instance voices telling the child to harm themselves or telling them terrible things about them from developmentally normal things and also symptoms of other disorders that might look like that. So childhood schizophrenia is narrowly defined exactly like the adults late adolescence of early adult onset illness. It is rare in children but children having psychosis that’s impairing and distressing is still rare, but that’s that much more common than schizophrenia. And so the other part is how you distinguish that from normal imaginative play, imaginary friends, just transient misperceptions that children have, nightmares, and how you see which those from normal developmental phenomenon from psychosis and then within psychosis you know which kids will go on to have schizophrenia versus some other sort of psychotic illness that may or may not last.
Rachel Star Withers: Talking about these kids, what are the ages that you see experiencing childhood psychosis, and what’s your earliest age that you’ve seen?
Joseph Gonzalez-Heydrich, MD: Typically the kids that have been getting referred to us because we’ve been concentrating on very early onset. So in about 20 percent of people with schizophrenia and with psychosis in general will have the first psychotic episode in adolescence after the age of 13 and probably closer to 16, 17, 18 and those are called early onset and that’s about 20 percent of everybody with this problem. Very early onset, which would be under the age of 13, is much rarer. And we’ve been concentrating on those kids because they’ve been getting referred to us at Children’s Hospital. So I’ve been mostly seeing kids who have the onset before the age of 13 but again that’s a rare event that because we’re a tertiary care center, these kids get sent here. We’ve enrolled in our research studies for the genetic study over a hundred forty of these kids and actually counting the studies we’re doing with biomarkers before that, closer to two hundred kids. Their ages, again because I’m selecting for kids, it starts under the age of 13 really are typically nine, ten, eleven, twelve but we’ve had I saw a kid this week who at age four went from having a touch of mild autism and they’re very verbal or engaged kid who would tell you lots of stories through a period of hallucinations. They were very frightening to him and basically have a deterioration in his functioning to the point now where he hardly talks and his interest in play and engaging people has markedly decreased. That’s an unusual case. And we see maybe five or six kids like that. More typically their onset is between eight and 13 so it seems like a very heterogeneous group. And the genetics are very heterogeneous and marked by a lot of very rare genetic events, more so than what you see in typical late adolescent young adult onset psychosis.
Rachel Star Withers: If there are parents out there and they’re suspecting that their child may have a problem with psychosis, what do you suggest that they do?
Joseph Gonzalez-Heydrich, MD: Well I would take them in to be evaluated by a professional and I’d also observe carefully, write down with observations that they have that are making you worry about this. If the child’s behaving oddly it is really helpful to get a video of that. So that a professional in office can view it with the parents to try and figure out what’s going on. And then depending on how gradually it happened etc., there might be some neurologic work up that has to happen. So again depending again if there’s been a very abrupt onset then we’ll worry about things that can look like schizophrenia but are autoimmune disorders antibodies attacking the brain relatively infrequently but those are things you don’t want to miss. The metabolic problems that need to be diagnosed in them could be treatable and so it’s important to take and get an evaluation. This should be a strongest consideration of medical or neurologic causes along with the psychological psychiatric evaluation. So it likely would be best to have someone who has a lot of experience evaluating childhood onset psychotic symptoms to really take a look and see. How typical is this because of how those sort of problems versus very frequently it might be not that. It might be misinterpreting things that are either due to another problem like a major depression or anxiety disorder or sometimes also just developmentally normal things. So I think getting an evaluation would be important and careful observations would be very important when it comes to treating the child.
Rachel Star Withers: Are there side effects with medications that we should consider?
Joseph Gonzalez-Heydrich, MD: There’s two issues with them and they the antipsychotics. As you mentioned they have side effects. The flattening and how people just feel sedated. They’re not fun to take. You know people often will take the medication because you know because I’ve learned that if they don’t they’re tortured by these terrible psychotic symptoms voices. But then the medication themselves do feel make you feel flatter and duller and harder to enjoy things and whatnot. You know it might be on the whole a plus if you’re getting rid of voices constantly telling you terrible things and whatnot. The things that are most difficult about, especially the second generation antipsychotics, is the weight gain and metabolic problems. So they increase appetite, some more than others, but they also increase appetite and make it harder for kids and for everyone who takes them to keep their weight healthy level. And so the kids will gain weight and then you know and then we worry this is going to put them at the longer term risk of Type 2 diabetes and metabolic syndrome and all the complications of obesity. So that’s actually the biggest problem is those side effects. To families, by the time they come to see me they are ready and they want some help. The other problem is these medicines always that they’re not completely effective. They’re treating symptoms or not treating the underlying cause. And so while you might be able to get hallucinations and delusions under control the other symptoms having to do with decreased motivation, decreased concentration, decreased ability to get up and do stuff. But those are really still there and we haven’t found any way to treat those. Part of the research that we’re doing is you’re looking for these rare genetic causes because the hope is if we understand the genetic cause we go from the gene to knowing what the gene makes to knowing what that protein does. And we could do these amazing things and it would sound like science fiction even ten years ago where we can take his blood cells and turn them into neurons and study the neurons in a dish and try to understand what’s wrong with the neurons and then screen lots and lots of medicines to see if any of them will reverse what is wrong with the neurons. So we’re looking for new treatments that might prevent the symptoms from coming up to begin with and be more effective and reverses symptoms than previous occurred. What we have now which would lessen symptoms but they don’t get at the underlying cause. The parents are usually willing to go with the medication in these events. They’ve seen a child suffer for a long time with very significant serious symptoms. We saw that with ourselves in terms of can we do this with a medication which has less side effects? We’ve had kids respond to Prozac family medicines where classically myself they would have needed an antipsychotic. Some of them will respond to that and that’s great. You have a lot fewer of those problems I just discussed. But often they do need the antipsychotic and then we had to work hard to maintain their weight at a healthy level. They should be getting exercise and then the other treatments of psychosis which are beyond medication which have to do with helping the school understand the child and how to teach them and support them. And then the people that are looking into things like cognitive rehabilitation and whatnot, trying to get back to normal functioning that might have been lost as a psychotic process took hold.
Rachel Star Withers: We were talking earlier in the episode about seeing this from an everyday person’s point of view but seeing it from a scientist’s point of view now that’s really awesome. Thank you so much for coming and sharing that with us, sir.
Joseph Gonzalez-Heydrich, MD: Thank you. Just for raising awareness because I think that one of the things that I think is really hard about this is lack of awareness and lack of understanding in our society. This makes it harder for kids to get the treatment, makes it harder on families who end up getting feeling blamed and whatnot for something which has a large component that’s biological and causation. Not in their hands.
Gabe Howard: Thank you again. We really appreciate it. And we’ve learned a lot.
Joseph Gonzalez-Heydrich, MD: All right. Thank you so much.
Gabe Howard: That was really awesome and I am so thankful that we had somebody from Boston’s Children’s Hospital associated with Harvard Medical School. They really do great research and they’re looking into schizophrenia to make life better for. Well frankly everybody with mental illness because this is this is cutting edge and this is important. And I’m so glad that he was willing to take the time. Rachel, how did you get him to do this?
Rachel Star Withers: Well he was talking about some of that research there that they did on genetics. They’d actually contacted me a few years back and I’ve been involved in some of those genetics programs. He was speaking about as far as them looking up the different I guess deleted chromosomes. That’s over my head. So what I thought was so interesting was actually hearing that side and him talking about the genetic side of things that most of us don’t, even like even doctors, it’s a lot over their heads and that’s I mean.
Gabe Howard: I know it’s we think that it’s only over our head it’s fascinating that this is so complex that everybody is struggling with it.
Rachel Star Withers: Exactly. But we do need to strive to be educated because there’s a lot at stake in this and constantly stay up to date. This isn’t something that, okay, I know all about schizophrenia now, goodbye. Like there are so many emerging things as they’re working on all the genetic side of it but also medications being developed therapies so we all need to stay current and the different treatments.
Gabe Howard: As somebody who experience symptoms as a child who is now an adult, was there anything that he said that was surprising to you?
Rachel Star Withers: He didn’t hit on it much but when he said the youngest age was four, that’s so young to me. How did how do you distinguish at age four what’s pretend and what’s not? And so it fascinates me that they’re able to do that. That they’re able to figure out you know the difference between which kids have autism, which kids are just over imaginative, and which kids have psychosis. It fascinates me.
Gabe Howard: I was really surprised by what he said about the parents because a lot of the things that we hear and read is that parents are just really rejecting this idea and they’re fighting hard against it and they’re scared to get help and all of those things are true. But his perspective is different. He said that by the time that they reached him they’re desperate and they’re scared and they’re looking for answers and that’s something that I hadn’t considered. How did that hit you as a person living with schizophrenia?
Rachel Star Withers: I really like then that he said that because it made me think Oh yeah. Because that’s kind of how I was. I didn’t know what was going on and I was desperate for help. At first I was I couldn’t find like a good counselor because I didn’t know I needed a psychologist. And I could just like as he was talking I could picture myself being in that situation of just I’m so worried. No one is helping me. I don’t know what to do and the fact that it’s about your child is so much deeper.
Gabe Howard: Are you encouraged by the amount of research and about the amount of knowledge that is going on in the country right now?
Rachel Star Withers: I found it so encouraging that he was able to tell us all these different projects that they’re working on all this different research that’s currently being done all these different like kids they’re looking at and trying to help. That’s incredible to me. And that gives me so much hope a lot of times when you do get the diagnosis of schizophrenia or another mental illness. It’s just like Oh no your world is ending and it’s just a lot of fear and I just like that he had so much hope for the future where this was all going. It wasn’t you know him talking at the research it wasn’t like Oh well give up guys. It’s like things you’re finding out that are different, that are new and I love that. So how I’m being treated right now could be completely different in two years who knows what could happen. And that’s so encouraging to me.
Gabe Howard: I liked his overall message of, listen, this is a medical illness and you need medical treatment because we’re doing medical research and we’re constantly learning and we’re constantly growing and we have a plan and if it doesn’t work out we’ll make another plan. And I think that’s very very important especially for people wrestling with whether or not to have their child diagnosed or to see a doctor. I really hope that people can listen to that and really hear that there’s so much going on and the outcome is a Rachel Star life right now. The outcome is adults living well in spite of their illness. And I think that that’s a really really valuable and important message for a parent who’s struggling whether to take the next steps.
Rachel Star Withers: And just on that note not even just so much living well but being able to live a lot of times when you have this diagnosis it’s hard to even consider the future at all. It’s hard to picture yourself alive next year. And for me I don’t know that gave me like some amazing hope of what he was talking that I don’t have to like be so worried about the future I don’t have to worry that you know my brain’s just going to fall apart and I’m going to end up in a mental institution like that’s that was just so cool though that he’s saying like all the different changes that are coming.
Gabe Howard: I think that that’s incredible. Rachel, where do you as a person living with schizophrenia fall on this? What’s your takeaways?
Rachel Star Withers: If this was the situation of my child had schizophrenia if I had a child, I would want them to get the best treatment possible and I would strive to help them in any way. I personally would still want them to have an amazing, awesome, cool, normal childhood. I wouldn’t want to just be like, Ok well, I’m dropping you off at the hospital see you in six months. But for me and people out there who might be scared of getting a diagnosis you can get a diagnosis you do not have to tell the world. I do know we’re on a podcast about it but you can’t keep it quiet. But don’t let the stigma and the fear hold you back from getting your child help or getting your self help. Thank you everyone for tuning into this month’s episode of Inside Schizophrenia. Subscribe, Like, and Share this episode on social media. My name is Rachel Star and I will see you next month.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at GabeHoward.com. For questions, or to provide feedback, please email [email protected]. The official web site for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening and please share widely.