EPISODE 6: CAROLINE AND MATHY DOWNING
[Andy Miles] Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Chicago's Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
In this sixth episode of “Akathisia Stories,” we hear from two amazing women: Mathy and Caroline Downing. Mathy was Candace Downing's mother and Caroline her sister. When Candace was in 6th grade, she began experiencing anxiety related to test taking at school and her math homework. When Mathy consulted a psychiatrist, she says that "it did not take him 10 minutes to prescribe the antidepressant Zoloft." He told Mathy to have Candace take the tiny green pills and said she could give the rest to her husband, Andy. Candace ended up taking the pills for about six months, her mom writes, but what really helped decrease her anxiety was physical exercise. Nonetheless, when seventh grade started, the psychiatrist decided that Candace’s dose of Zoloft should be doubled. Mathy was against this, but the doctor insisted, saying that kids take 100 to 200 milligrams a day without any problems.
In the beginning of January of the following year, Candace had a severe negative reaction to taking an extra pill, something the psychiatrist had told her she could do if she was concerned about taking a test the following day. “We now know that Zoloft is never to be administered in that way,” Mathy writes. The additional pill put her in a downward spiral. She began speaking loudly. She became paranoid. Mathy called the pediatrician who, in turn, told her to call Poison Control. Their judgment: Candace was suffering from serotonin syndrome and should be taken to the hospital immediately. In the car, Candace became feverish and very nauseous. She vomited almost as soon as they pulled up to the hospital.
Instead of just monitoring Candace once admitted to the ER, the doctor gave her an IV of two different sedatives, which were contraindicative to antidepressants. Her pulse rate went up, her heart rate doubled, her fever went higher, and she began hallucinating. She should have just been monitored until the medication left her system, but instead, she ended up in pediatric intensive care under constant watch. She was so terrified that her mother never left her side and stayed on the hospital bed with her.
Candace went home at the end of the week and went to school on Friday. She also saw the psychiatrist, who advised her to not take any more Zoloft for another two weeks.
Mathy continues: “Of course we now know that the abrupt withdrawal from these powerful drugs can lead to death, which in Candace’s case is exactly what happened. Candace died less than 24 hours later by hanging herself from the valance of her bed. She had never been depressed or suicidal. She was just 12 years old. We knew immediately that her death had been caused by the medication,” Mathy writes. “We trusted the medical establishment, and they destroyed our family.”
Candace died 16 years ago this month. Her older sister, Caroline, is now 30 years old. She's been outspoken about drug education since losing her sister in 2004. Just a child herself at the time, she co-wrote and narrated the documentary "Prescription: Suicide?" Winner of the Citizens Commission on Human Rights Award for her advocacy at just age 18, Caroline remains passionate about her sister’s legacy. As a young adult, she knows that knowledge is power and encourages others to learn as much as they can about medications and their health before making any major decisions regarding their health care. Her blog, although mostly focused on style, doesn’t shy away from talking about sensitive issues such as mental health and losing a sibling. Caroline works in D.C. and lives in Maryland and hopes to write a book about her experience of losing a sibling to SSRIs.
We’ll spend the first half of this episode listening to her story, recorded late last year via Skype. Later in the hour, we'll hear from Mathy.
Caroline, I know that you’ve been involved in awareness-building activism, like your mom has. Can you tell me how you got involved with that, how that developed, and what that looks like today?
CD: OK. So it started when I believe it was a lawyer put Robert Manciero in touch with my family to do a documentary, got us involved with a documentary about children who had suffered either death or just awful side-effects from being on antidepressants. And it kind of evolved from there. So the name of the documentary is “Prescription: Suicide?” And I’ll be completely honest: When we first started working with them, I hated it — (laughs) — because I was, you know, in high school. High school’s miserable already, but I was a high schooler who had also lost a sibling, so not only, you know, do you feel like a freak already when you’re 15, 16, but, like, I felt like a super-freak. (Laughs.) And we had this documentary team that actually came to school with me, and Bob — I actually — I saw Bob this past fall and he was like, “You know what? You were really difficult to work with for the first couple of days,” because I was just terrible. But I ended up really — now I call him Uncle Bob. Like, I ended up really, really loving them and they got me — they kind of decided that Candace would be the thread of the documentary, kind of her story interwoven with all these other kids, and they actually asked me to narrate it. And I then ended up with writing credit and narration credit for this documentary by the time I was 18. And I loved having the power to be able to speak to so many people about what my family had gone through. And then from there, we got involved with the Citizens Commission on Human Rights, and I became — I don’t know if you would call me a child advocate at that point. You know, I was a little bit older, but I was a young advocate that could speak to this experience that was so awful. And I think I just — I feel like I kind of brought a fresh voice to it that wasn’t, you know, politicians or parents. It was like, hey, this is what it looked like from a kid’s perspective, and it was terrible.
And I think my role now is just to be an ear and talk to people and help lead them to resources, such as, you know, Know More About Drugs, which I think is awesome; you know, letting people know about the med guides; letting people know that they can educate themselves and they don’t have to just take a medication because their doctor tells them to. There are so many more resources now than there were available in the early 2000s. And I tell people all the time when they’re like, “Oh, your parents really — you know, they put your sister on antidepressants; she was so young” — well, yeah, because the doctors told them to, and this was before the time when everybody was Googling everything. You know, now I got put on eye drops and I was like, “Oh, let me Google the eye drops to make sure they don’t have, you know, hormones or something in them.” Yeah, I think people are much more cautious and much more aware now, and I really feel like my family’s had a lot to do with that.
AM: You mentioned Know More About Drugs and it occurs to me that there’s been an evolution in drug-awareness messaging over the years, because, you know, 25, 30 years ago, organizations sought to inform people about the dangers of cocaine and illegal drugs like that, which they still do, but over time there’s been a lot more attention given to legal drugs that we’re being prescribed every day and that they are potentially very dangerous for us.
CD: Oh, absolutely. And I think that also came with this over-medication of kids. Like, I — you know, after what happened to my sister, my parents never wanted me on anything. My high school actually recommended that I be put on ADHD medication after my sister died, because they were like, Caroline’s not focusing. And my mom was kind of like, “Yeah, no duh.” (Laughs.) “She just lost her sister.” And she actually did take me in for testing and they were like, “Well, she is showing symptoms of ADD, but it’s mostly in subjects she’s not interested in.” Well, again, no duh. Like, I was failing math because I hated math. (Laughs.) But, you know, rather than put me on medication, I was basically — I joked that I was prescribed extended time, so I had that option, you know, if I needed to take longer to take my test or if I needed, you know, a break to go get a water. Honestly, I never ended up actually using it, but knowing I had it made me more confident. And I ended up, you know, back on honor roll, and then, you know, went to college, graduated Dean’s List. You know, I didn’t need the medications. And honestly, it was so rampant in my high school.
Like, I remember one time in high school I was sitting in — we had a senior lounge and I was just doing my homework or something, and I overheard this conversation that was like, “Hey, I’ll trade you a Xanax for a Ritalin.” I was like, what?! It wasn’t drug dealing; it was drug trading. You know, it was bizarre. And I knew how bizarre it was because I knew how dangerous the stuff was. But it was just crazy to me that kids were just trading these drugs that they had legally, and it was kind of just glossed over. That was never something even my school talked about. You know, when they talked about drugs, it was like, oh, don’t smoke weed, you know; don’t do cocaine. But it wasn’t, you know, anything about the legal drugs all these kids were on. (Laughs.)
AM: Backing up to something you said when you were, I think, answering my first question: You mentioned that when that documentary was being shot it felt like a freak show for you. Can you elaborate on that?
CD: Yeah. I mean, like I said, you know, being in high school is hard enough, but when I went back to school the day after my sister died, it was like, it felt like everybody was whispering about me. And it was bizarre for me because this is my first year at a new school when I’d been at the same school from second grade through eighth grade and this was, you know, halfway through my first year. So when they came to start filming the documentary, they wanted the B-roll shots and they were literally following me from class to class and into the stairwells. And I get it. I ended up going to film school after being in the documentary. But it just made me feel even more isolated than I already felt, because it was a weird thing. I went to a really tiny private school. Everybody knew everybody, so I was, like, not only now add, like, new freshman but new freshman whose sister died, who has a film crew. (Laughs.)
AM: So going back in time, how would you characterize the relationship that you had with your sister, and how would you describe her just, you know, as a young person?
CD: Because we were so close in age, we really were close. And our cousins and everything didn’t really live all that close to us, so it’s kind of like we had each other. We were very close. I mean, we fought about stuff, but it was like, you know, stealing each other’s makeup or stuffed animals or whatever. But we did everything together. I mean, we even had some of the same friends. Like, her best girlfriend was a little sister of my best guy friend. So it’s like our entire families, you know, went on vacation and everything together. We were really protective of each other. She had one friend that — I say “friend” — little brat that she went to school with that wasn’t always nice to her. And if I knew that she was being bullied, this girl would call and I’d hang up the phone. It was like, “No, you’re not talking to my sister.” (Laughs.) Like, that’s not — “I’m the big sister. I’m the gatekeeper. You’re not going to do that.” But I think because we were so close in age and it was just the two of us, we really were very close. And she was just like this little, like, ball of sunshine, you know. She did all these sports so she did soccer and lacrosse and we both did swim team, basketball. She was really into basketball. And you know, she wasn’t the best because she was kind of a little runt — (laughs) — but she just always had enthusiasm and spirit and all of her coaches absolutely adored her. And she also was an advocate for other kids who were being bulled. So she couldn’t always stick up for herself, but she was always there to say like, “Hey, we’re not going to mean to this person; like, this is our classmate and, like, we’re going to include them.” And that’s just the kind of kid she was. Everybody loved her.
AM: Yeah. So during the time when she was having these struggles being on the medication that she was on, how would you describe her sort of everyday demeanor at that time? Do you remember sensing that there was something wrong, and did she share that with you?
CD: She never shared it with me. You know, if she shared with me, like, how her mental health was doing, it would be more like, “Oh, I’m feeling nervous today because I have a test,” or whatever, but it never was like, “Oh, this medicine’s making me feel weird.” Looking back on it, we didn’t realize it at the time, but there was a period where she would get violent with me. So we would go home after school — we had a carpool and a key, once I was in middle school, so that we could just go home after school, do our homework, or whatever. And we had, you know, one family computer in the basement and we would fight over it. But her fighting with me got really physical. Like, she would grab my hair and, like, slam my head against — (laughs) — whatever was available, just kind of like cat-fighting. And I didn’t know that was a symptom of — you know, the violence or the irrational behavior. I didn’t realize that was a symptom of the medication. I just thought she was being a little brat. So it didn’t occur to me until afterwards. Like, oh, that wasn’t her. That was the stuff she was on.
AM: And did you have a sense toward the end that things were definitely worsening?
CD: Yeah. So when she came back from the hospital, she had started hallucinating. And that was the weirdest thing. So we had this cat, Cookie, and she would just see Cookie popping up in places where the cat was not. So like on top of our TV in our living room or on the mantle of the fireplace, she just kept being like, Cookie — she was really confused. And she was like Cookie is everywhere. Like, Cookie is, like, up on the TV, and we’re like, no, Candace. And we thought it was maybe her vision was off, but she was actually having hallucinations. And we actually realized — she had said that one of the moms on her basketball team came up to her — she went to the game; she couldn’t play but she wanted to go support her team. And she had said that this mom came up to her and said you’re not supposed to be here. Like, if you were really sick, like, you wouldn’t be here; like, you should either play at the game or go home. So my family was obviously livid, but we realized, like, that didn’t happen. There’s no way; nobody left her alone for any period of time where this woman could have come up and been nasty to her. So the hallucinating really what was the scary part when she really started declining.
AM: And that was alarming to you and your parents at the time?
CD: Oh, yeah. And I, like — the first couple of times I tried to, like, brush it off. Like, oh, she’s just tired and her vision’s bad. You know, again, because I was 14. (Laughs.) You know, I didn’t know from hallucinations, but she was definitely hallucinating.
AM: And I believe that your mom told me that the day of her death, Candace had been out happily playing with some friends, and then things just kind of darkened from there.
CD: Yeah. So what it was, actually, I’d had a slumber party the night before. I had an annual slumber party with, like, five to 10 girls. And Candace actually came down and had been with us, you know, watched a movie and all this stuff. And she was being — pardon my French — she was being a little pain in the ass the next day. She’s like, oh, you guys made such a big mess; you’re going to have to, like — you know, this is going to take you forever to clean up. You know, if you give me $30, I’ll do it for you because this is such a big mess. So she was definitely, like, being a little, like, imp — (laughs) — that day. You know, was watching “Animal Planet” with my dad. It was, you know, a very normal day. She was acting very normally and we kind of thought she was coming out of it.
AM: And then what else do you remember from that day?
CD: I don’t like this part. Sorry. So, when she was being such a pain, I told her to “shut up and go to your room,” because I was a little kid too. And that’s when she hanged herself. Sorry.
AM: How does a 14-year-old like yourself process what has just happened? Do you remember that, or is it just kind of a haze?
CD: No, I actually do remember. So my mom found her and screamed. And for some reason, my first reaction was to go downstairs, back to the computer, and I had been IM’ing a friend of mine, instant message, and I IM’d him, “I think my sister just died.” And then I hid in the bathroom in the basement. I don’t know why that was my reaction. And then the cops — when the cops came, they forced me out of the basement because they didn’t want me anywhere locked; they wanted to keep an eye on me. And so I sat at the counter and one of the cops actually asked me if it was my fault. And that’s a whole other issue. And I remember sitting — because my dad had been baking crème brûlée and we had this big cookbook out on the counter and this cop was just awful. And I was thinking, I wonder if I’d get in trouble if I threw this cookbook at the cop. And then somewhere in there, our friend, a family friend came to pick me up. I don’t even know where — I think my dad was still there until Carol came to get me, but she picked me up and I was at their house and I stayed at their house for, I don’t know — I thought it was a couple of days. It might have just been overnight, but I just didn’t want to come home. But I spent the night with these friends, and it was actually Candace’s best friend, and then all of her friends came over the next day, and I was like, “You know what? I’m just going to stay here.” And my grandma came and was like, “You need to come home.”
AM: And you said you went to school the next day.
CD: So I went to school — I guess this happened on a — I think she died on a Saturday, and then I went to school on Monday.
AM: So you didn’t miss a day of school, but it wasn’t the next day.
CD: No. Like, I actually, when my parents told me she died, the first thing I said to them was, I’m going to school. And they were like, uh, OK. (Laughs.) And I don’t know. Like, I think back on some of my reactions and it’s just like, I have no idea where they came from. But I did — I was in my friend’s playroom. They, like, took me upstairs to talk privately. And they were like, “Candace died.” And I jumped up on the couch and I was standing on the couch, and I was like, “I’m going to school.” (Laughs.) It was like, “Uh, OK.” But no, I didn’t miss a day of school at that point. And then a kid told me that I was lying, that if my sister had really died, I wouldn’t be at school and never forgave him for that.
AM: But otherwise, it sounds like you had a fair amount of support from friends and teachers?
CD: Oh, yeah, absolutely. And I was especially close with my school’s chaplain, Rev. And he’s the one that — I didn’t really care for the guidance counselor. I don’t even know if she’s still there anymore. But I would end up in Rev’s office, like, every time I got really upset. And little things would set me off. Like, for some reason, every time we got yearbooks, I would throw an absolute fit and like have to go talk to Rev, like, just someone nice to calm me down. I’ve always had great advisers. I still keep in touch with one of my teachers, you know, fairly regularly, and it was just a lot, a lot to go through at that age.
AM: And what about the yearbook was triggering you?
CD: I think it was like — in the back of my mind, it was like, Candace is never going to get another yearbook.
AM: And how long a period of time would you say that you were deeply affected in that way and were prone to those emotional outbursts and that sort of thing? I imagine at that age and with the gravity of what you were going through, it was a long process.
CD: Oh, absolutely.
AM: Does it continue, in some way?
CD: It’s still there. There are things that — I can’t even think of anything specifically, but there are definite times that are harder.
AM: Like this?
CD: Yeah — (laughs) — like this. Steve Irwin dying was a big one. (Laughs.) She loved Steve Irwin, and his daughter is getting married, and for some reason that’s really hard for me — (laughs) — just because Candace absolutely adored him. But Steve Irwin dying and Robin Williams dying, because she just loved the Genie. “Aladdin” was her, like, favorite Disney moving. So it was like, no, the Genie died. So there are certain, like, other deaths, especially that really, you know, hit close to home. That was a really sad one.
AM: And is it the case that you still miss her in this way that you can almost sense her presence?
CD: Yeah. And I talk about her all the time.
AM: I was going to ask you that, yeah.
CD: Yeah. One of my best friends from high school, actually, recently — well, like, semi-recently, within the past couple years, was like, “I love that you talk so much about Candace now,” because I think in high school it was really hard for me, but now, like, you know, I’ll talk about stuff we did as kids. She’s like, “I really like that you talk about her, because I feel like I got to know her,” because she — I don’t know if this girl ever even actually met my sister. Maybe briefly.
But I do. I talk about her all the time. And when I first went to college I was — so I was in a sorority and we did these kind of getting to know you interviews with the sisters, and I had a really hard time dealing with the “Do you have any siblings?” question, because I didn’t know what to say, and I didn’t necessarily want to talk to these girls who I barely knew about losing my sister. But now when people ask me if I have any siblings, I’m like, “Oh, no, my sister passed away when I was 14.” And usually they kind of drop it, unless I want to talk about it, which is great.
I find the most awkward response, and I know it’s kind of just everybody’s default, is when they say, “Oh, I’m so sorry,” and it’s like, what do I say to that? (Laughs.) So usually I’ve just stopped answering when people say they’re sorry, and then we move on and we talk about something else. But I’ve kind of gotten over the awkwardness of telling people that I had a sibling who died.
AM: And when you say you talk about her frequently, what sort of things are you sharing? Will something trigger a memory and you mention that, or —
CD: Oh, yeah, like — I don’t know. Like, you know, I’ll be at a bar and Nelly will come on, and I’ll be like, “Oh, my sister loved Nelly!” You know, that type of stuff. It’s not always morbid and gloom and doom and what happened to her, because that wasn’t her whole life. You know, she had a childhood before that happened.
AM: Is there a component to you talking about her in certain contexts where you’re trying to raise that awareness that other people might benefit from?
CD: So I always tell people, you know, if we’re talking about mental health: I am not a doctor, I am not a psychologist, I am not a therapist. But if people have questions for me or if they come to me with concerns, my — there are times when, like, I’ll bring up Candace’s experience. So, for example, this girl on Twitter was like, “Oh, I want to, like, stop taking my antidepressants; I hate how they’re making me feel, blah, blah, blah; like, I want to go cold turkey.” And I’ll be like, “Hey, from my experience, going cold turkey off of these is not good for you. Here are some resources. But, you know, my sister was prescribed a ton of stuff, was given a ton of stuff and then went off it and it killed her. So just be careful.” So I always try to frame it like I’m not a doctor but here’s what happens, so do some research. That’s kind of my thought process with that.
I think my main goal as — I don’t know if I even want to call myself an advocate but just as someone who’s been through losing a sister, I just want people to be able to be informed. Like, that’s my — that’s what I bring to the table. I’m just like, educate yourself, because there are so many resources now that you don’t have to go blindly, and you should not go blindly, into, you know, taking your mental health seriously. Like, I am not anti-drug. I’ll just say it. I’m not, because I think that, you know, there are cases when they do help people. But I do think that everybody has a right and really a responsibility to themselves, to the families, to be informed, to make informed decisions. And I think that, you know, there are so many resources out there now that it’s almost like you don’t have an excuse. Like, do your research. Take care of yourself. Take care of your loved ones. And just know what you’re putting in your body and what they can be doing to you.
AM: And would you say that’s what motivates you to do an interview like this?
CD: Oh, yeah. Yeah. And I also — I don’t know if you’ve seen “Hamilton,” but the last song, it’s “Who Lives, Who Dies, Who Tells Your Story?” I’m telling the story because she didn’t get a chance to, and I feel like that’s my responsibility as her sister.
AM: And have you felt like that for a long time?
CD: I have felt like that since I got used to Bob filming me. Once I like got over that hump of being like, “I don’t want to be in this documentary, I just want to be normal,” I was like, you know what? No. I have a chance to tell Candace’s story. I have a chance to, like, help people and to prevent this from happening to other people.
AM: I’d like to talk about the process of being a public persona and doing that at a young age. How would you describe the impact that that had on you and the adjustment that you had to make in going public with that story?
CD: It was bizarre. (Laughs.) It was really strange because so many — going to the CCHR events, for example, especially the year that my mom and I won the Citizens Commission on Human Rights Award together, was super surreal, because I had people like Laura Prepon, who plays Donna on “That ’70s Show,” come up to me crying in an elevator telling me that, like, our story moved her. And I was like, I have been watching you every week, you know. (Laughs.) I know who you are. I made you cry? You’re the celebrity. And that was a little strange. And then I’ve had — having our story be on YouTube was also weird because I, like, fell down a rabbit hole of reading the comments once and there were, you know, thousands — well, maybe not thousands, but hundreds at least of people judging us and judging my family, and I started responding to the comments, and I was up to like 3:00, 4:00 in the morning, like, just answering these people back. And I think setting boundaries for myself, like, OK, you really — you can’t do this. You can continue telling your story, but you don’t have to respond to everything that anybody says about you.
AM: And what were some of those judgments or what were the ones that you really felt compelled to reply to?
CD: The worst types were the ones saying, like, “How could this parent, like, drug their kid? Like, everybody just wants to drug their kid and make their kid behave.” And it’s like, well, OK, that might be the case, but in my family, it was because she had anxiety and they were trying to help her. It had nothing to do with making her behave. And that really, really upset me. Its like, how dare you talk about my parents? I’m extremely protective of my parents. So the fact that people were coming for them in Internet comments just absolutely infuriated me. But the worst ones were really the ones judging my parents, because all they wanted to do was what was best for their child.
AM: And all of those comments are coming from a place of ignorance because they don’t know your family. They don’t know Candace. They don’t know any of you. They don’t know the circumstances. And yet, in an anonymous comment, they can let the world know what their opinion is, and that can be very enraging, I have no doubt.
CD: Yeah. It was absolutely insane to me that these strangers on the Internet could be judging my family. But then it was like, OK — (laughs) — think about how, like, not to compare my family to the Kardashians, but it’s like, think about how the Kardashians feel — (laughs) — every second of every day. And when I was little, I really — I wanted to be famous; like that was my life goal. I was like: “I’m going to be a pop star. I’m going to be as famous as Britney Spears.” And thinking about how mad I was at this, like, you know, handful of hateful comments about my family, I was like, oh, maybe I wouldn’t be able to take that criticism! (Laughs.)
AM: And is that something that you still have to contend with, or was that something specific to that documentary and to that period of time when it was released?
CD: I think it was more specific to the documentary, to be honest, and “The Candace Downing Story,” which is also on YouTube. So it was more of that time. I think people now — you know, because more information is readily available about what has happened to her and to so many other families that I don’t think there is so much of a judgment.
AM: Yeah. And something you said earlier, when you were in school and they wanted to prescribe a drug and that — and you said, you know, “Of course I’m suffering right now; my sister’s just died.” I think there is a mentality that people have, including people who write these prescriptions, that “Hey, you don’t have to feel that pain. You can take this drug and just make it go away.” And that’s just not how humanity works; it’s not in us to mask something like that, because it doesn’t go away.
CD: No, and what I said even before I, like, fully understood, you know, mental illnesses was I believe that depression and anxiety — I’ve actually — my therapist diagnosed me with anxiety. I believe they are very real things. I know they are very really things. However, I don’t think they always need to be treated with medication. I mean, the way we’ve been dealing with mine is I quantify where my anxiety is and how clear my thinking is. And then I re-evaluate, you know, after taking a few deep breaths, where it is. And actually, quantifying my anxiety — (laughs) — I know that sounds really weird, but it’s like on a scale of one to 100. Apparently it, like, connects two different parts of your brain that actually does bring you more awareness and brings your anxiety down. So that’s like the coolest little trick that I’ve learned, and it has helped me immensely. And every little thing that I can do like that just makes me feel better. Like, hey, I did this without having to take anything. I’m not masking anything. I’m fully dealing with my feelings.
AM: So what would be the most important thing someone listening to this could take away from our conversation?
CD: I think the most important thing when dealing with mental health and medications and mental health is, like I’ve said, educate yourself and listen to yourself, and if you are — you know, if you have decided after doing your research, like, hey, I want — I think that maybe this medication could help me, help me with my issues, if you’re not feeling right, if it’s not making you feel better, if it’s making you feel not yourself, then talk to a doctor about safely — safely — removing it from you and, you know, try something else. Try talk therapy or art therapy or, you know, something where you can fully feel what’s going on but that you deal with it in a healthy way.
We’ll have my interview with Mathy Downing in a moment. First, I have a brief update provided by Kristina Gehrki of MISSD.
MISSD ended a successful 2019 and began 2020 with a strategic advertising campaign in the Big Apple. The New York City subway ads ran during the holidays to reach residents and international travelers during peak tourism season. MISSD founder Wendy Dolin said the ad campaign also included phone notifications linked to zip codes near major hospitals.
“People experiencing akathisia may be unaware they are exhibiting symptoms of adverse drug effects," said Dolin. “People who may be suffering from akathisia, or have a relative or friend experiencing akathisia symptoms, should specifically mention the possibility of akathisia when seeking medical attention."
Currently Mathy Downing is a nonpublic school teacher working with grades kindergarten through fifth grade, in subjects such as math, reading fluency and comprehension, writing, and counseling. She remains an international child advocate, a position she's had since 2005, the year following Candace's death. Mathy is an active member of Alpha Delta Kappa, the international Outstanding Women Educators sorority, and is on the boards of Empathic Therapy with Dr. Peter Breggin, Episcopal Church Women, African Palms, and is the United Thank Offering coordinator for the Diocese of Washington. She is also a member of ISEPP, the International Society of Ethical Psychology and Psychiatry.
Advocacy has played a major part in her life beginning the year Candace died. It began with her testifying in front of the FDA in the summer of 2004, which led to numerous television, magazine and newspaper article appearances. She has spoken internationally about the rights of children with informed consent, drug transparency, and over-medication. She has also been heavily involved in numerous documentaries in which Candace's story has played a key part.
Mathy is also now a key member of the Know More About Drugs alliance. KMAD alliance is an informative website for parents so that they can make informed decisions about any drug prescribed for their child.
Last year Mathy and I spoke first by Skype and then, when the Internet connection wasn't ideal, by phone. You’ll notice the change in sound quality pretty early in the interview. During the interview, Mathy references MISSD founder Wendy Dolin and national drug safety advocate and MISSD board member Kim Witzcak, both of whom have shared their stories in this podcast series. She also mentions her husband, Andy.
Mathy, could you start by telling me and the listeners about Candace, the kind of girl that she was?
MD: Candace was a beautiful little girl, probably the most popular child I’ve ever met, and as a teacher I’ve met a lot of kids. Everyone called her their best friend. She was an honors student. She was an athlete. In summer she was on the swim team. Fall was soccer. Winter was basketball. And spring was lacrosse. She was tiny but she was mighty and a true leader. I think one of her best traits: She was probably one of the most compassionate and understanding children that I’ve ever met. Her idols were Dr. Martin Luther King, because of his belief in equality and fairness for all people. So even at 12 years old, this child was wise beyond her years. She was a little sister. She had a close relationship with her sister, Caroline, who is a couple of years older. She was just an absolutely great kid that had so much to offer. She was always happy. She was cheerful. And she was the person that her friends went to when they were sad because she always knew how to make them smile.
She loved to sing, pretend she was a singer. You know, she – her activity – I mean, she was a beautiful artist. But her activities were just fun activities. You know, the last day that she ever played with a friend, they dressed up in funky clothes, got on their scooters and rode up and down the street singing at the top of their lungs, laughing like crazy, and then four hours later she was in the hospital.
So it’s just – there’s just no warning. And honestly, when Wendy started listing all the different side effects from akathisia, and I’m going yep, Candace had that, Candace had that, because even in, you know, the discovery phase, it was in very general terms, but thinking back, Candace had so many of the symptoms, but nobody – we couldn’t connect the dots, because we didn’t know what the dots were. And you know, to find out after the fact that we could have avoided all of this, we could have just said, you know, forget it, we’re not doing this.
And I will tell you that a local mother, who never would tell me her name, called and said, I just want you to know your daughter saved my son’s life. And I’m going OK. And she said that her child had OCD and a lot of, you know, anxiety, and she was referred to a doctor, who ironically was Candace’s doctor. And she went in and with 10 minutes, there she was with her prescription of Zoloft. And she said, “I want to talk to you about Candace Downing,” and he about fell off his chair. And he said, “Well, every child’s different and, you know, not your child; your child will be fine.” And she just said, yeah, right. And she walked out. She told me she walked out of his office tearing up that prescription for Zoloft and put her child in cognitive therapy behavior, and she said, “He’s great. No drugs. He’s great. And I owe it to you.”
So it is why I’m speaking out. And you know, people go, how can you do that? It’s because I can be a victim and just wallow in what I’ve lost. I can be a survivor meaning, OK, I can get out of bed today; I can walk outside today. Or I can be an advocate and say dammit, I don’t want this to happen to another family. I want people to know what happened to us so that it doesn’t happen to them, so that they have the warning that we were never given, that this is not a good thing. And, you know, it was very prevalent for a while and then people just kind of got desensitized to it. I mean, you look at the drugs they talk about on TV and all the side effects. Nobody listens. And they’re said so fast you can hardly understand them. And people aren’t really paying attention. With this interview we did for ABC in January, it’s bringing it to light again. And I’ve been getting calls every single week from people all over the United States who have lost a loved one, so it’s still happening. People have to be aware. People still aren’t aware. And if they understand akathisia, if they understand what’s going on, if they understand what side effects may occur, to look for those so that it can be nipped in the bud. You know, it’s helping all of us to advocate, to be activists, rather than just sitting back watching it happen to other people, saying “poor me, poor me.” That doesn’t get you anywhere.
AM: It’s been 15 years since you lost Candace but your advocacy work continues and has really never stopped, it sounds like. What does that look like now and how did you initially come to be a public advocate for this cause?
MD: What happened was one of our neighbor’s mothers read an article – she lives in Florida — saying that there were going to be FDA hearings about children and antidepressants. So we went to our first FDA hearings about three weeks after she died and we sat there for eight hours listening to person after person tell our story, because when it happened, we didn’t know anyone else had ever experienced the same thing. But to go to those hearings and listen and listen and listen, and one family had a situation so similar to ours that when they were done testifying, you’re given three minutes, I literally went over and I hugged them. And I just said, “Oh, my god, it’s just like our daughter.” So the next time they had hearings – that was in February of 2004 – the next time they had the hearings in September of 2004, you better believe we were on the docket.
But because I was local and because I had a very strong testimony, they did not want the press there, so they made me Speaker 71, hoping that they’d all be gone. But they weren’t. So it was picked up in the local news, what had happened to us. Gardiner Harris picked it up and talked about my testimony in The New York Times. And it kind of backfired on them. There was a press conference where Tom Laughren, who was head of the psychiatry for the FDA, held a press conference and he had daughters the same age as my daughters who attended the same school. And I mentioned in my testimony, you get to watch your daughter graduate, and I will never have that chance. And the FDA said that was really unfair of me. So that came up in the news conference. In the press conference he kicked the reporter out of the press room, told her she couldn’t be there. And she fought it and they let her back in, as long as she didn’t mention Candace’s name.
We were just – we were on all of the stations. We were on CNN. When the black box warning was announced, CNN called and said, “We want you in D.C. in an hour and a half; we want to put you on the news when this is announced.” She’s been on in every way imaginable because our case fits the profile of all these different pieces of it. And so it just kind of mushroomed from there. I began doing lobby work with different groups. And when I gave testimony on the Hill, I made sure that my written testimony was in color, and the front page was a picture of her with her birth date and date of death. So when you went into these hearings, the first thing you’re going to pick up is this beautiful picture of this little girl, and there’s my testimony.
I took every possible avenue I could to get the word out. And I’ve met incredible people through it, and we, you know, Kim and Wendy and I will all say, we belong to this club that nobody wants to belong to, but it’s made up of the most incredible people you will ever meet anywhere. So it will ebb and flow a little bit, but it has been incredible, and it’s just completely picked back up again.
AM: And do you think that will sustain itself for some time to come? Because you’ve been at this for a long time and you’ve seen the ebbs and flows, and I assume you would attribute some of the ebbs to just the force that is big pharma.
MD: No, that’s true. They’ve got a lot of money. But the thing that’s interesting is there are certain people they haven’t been able to shut up. It’s funny to me and to Kim that Pfizer knows us by name. You know, we’re forces to be reckoned with. It’s the same thing with Wendy and Glaxosmithkline. She is a known entity to them. And there’s almost a little bit of humor in knowing that a corporation knows who you are, because you’ve fought them so strongly and you’ve not let them beat you down.
You know, intimidation is such a big part of these pharmaceutical companies, and they haven’t been able to intimidate us. They haven’t been able to shut us up. And we continue to go out and say be careful. And I do make myself available to people that need support. You know, a lot of it is just being an empathic listener, because there are a lot of people in similar pain. So not only am I listening to them, I understand from a very deep, emotional level.
AM: Was it difficult to go public with your story? You mentioned in the materials that you emailed me that you and your husband were questioned as to whether you had “overdosed” your daughter. Were you afraid that in going public with the story you might expose yourself to that sort of questioning? And was it ever the case that you were exposed to that?
MD: Actually, never. No, because it was always clear from day one; it was clear what it had killed her. And we never had any backlash from anyone, from the community, from anyone. No one questioned what had happened to Candace.
We had one incident with the police department where Caroline heard me screaming and Andy crying and 911 and all of the sudden our house was full of police and, you know, emergency vehicles, and they even sent, you know, a firetruck. And it was horrible. She’s terrified. And she locked herself in a bathroom. And one of the police officers told her she needed to come out and she came out and the first thing he said to her – now, Caroline’s 14 – “So are you a mean sister? Are you the reason this happened?” And it was so horrific; it took her a week for her to tell me what he had said to her, but it was so damaging that we started her in art therapy immediately. We put her in therapy immediately. And I contacted the police department basically to say, “How dare you? How dare you do that to her?” And his sergeant said, “Well, what do you want? Do you want his badge?” And I said “No, I want your officers to know how to deal with kids in trauma and, you know, we expect there to be some kind of training so that these guys know what to do,” because you know what? Candace wasn’t the only young child in this area that hanged herself on Zoloft.
And they never said anything; they never had any follow-up with us, so we waited two years and then threatened to sue the police department for the damage they did to my surviving daughter. And I got a call from the police chief, “Please come in and see me.” And I did. Well, it turned out they had developed a crisis program for officers in dealing with children and trauma, but they’d never told us. So I met the person that designed the program. They showed me the, you know, the pamphlet that they had created, and it’s like a 360-hour program that they went through. They never told us. So there also has to be a better understanding on how police officers react or treat people involved in these episodes. There has to be a deeper understanding at a law enforcement level. They’re quick to blame, and they did make that officer, plus the one that was with me who was great – they did go through the training themselves.
AM: So you mentioned the support that you got from your community. And I was going to ask you: In the work that you do and the conversations that you have, would you characterize most people that you talk to as prescription drug skeptics or just ignorant to the risks? Because it seems to me that conversations like the one we’re having are very poignant and have a lot of force, but to go out into the more general public, I think a lot of people wouldn’t really have any idea that the side effects that they hear spoken of in those commercials are very real and can have deadly consequences.
MD: Well, people know that I’m approachable and I think that that helps, that they don’t have to be afraid to approach me. And what’s interesting is, you know, being a teacher, I know warning signs. In fact, I had one child that had developed a tick and started having sight problems, and I had the mom come in and talk to me, and I said, what drugs is she on and what is she on them for? And she gave me this litany of prescriptions that this seven-year-old was on and she was on them because the parents didn’t have a good marriage, were very violent with each other. This child was having nightmares so they gave her medication for sleeping. Then she was agitated because of it and they gave her something else. And she was on, like, four or five different medications and it had created a tick. So I called Dr. Breggin, told him what she was taking, told him what I was seeing, and he told me which drug was actually causing the tick, and I met with the mom again and told her what I had found out and she started crying. She said, “You think I’m a bad mother.” And I said, “No, I think you care very deeply; you’re doing what the doctor told you to do, but you have to be aware, if she doesn’t get off these drugs, this tick is going to become permanent.” I asked the mother to take her for a vision test because the tick was so bad with her eyes. The mom was able to get the child weaned off all the meds, and she was fine. And she said, “Well, she doesn’t get her work done at school.” And I said: “Your daughter’s a perfectionist; it takes her longer to do it because she wants it to be perfect. She’s very bright. She just has her own way of doing it.” And she said, “Well, she’s really talkative,” and I said, “She’s an only child; she can’t talk to her parents because you guys are fighting. She talks to her dog that you got her. That’s who she talks to.” And I knew this just from the child having told me. So I’ve been able to use my knowledge, as well as, you know, the counseling degree, to better understand kids and approach parents.
I had another mother call me and say that her daughter had been great, she was a really great kid, and all of a sudden there had been a change in her behavior. She was having outbursts and they didn’t know why, and she was angry and they didn’t know why. And of course, the doctor said, “Oh, you know, we’ll just drug her,” and the mother, because of knowing what happened to Candace, said “No, I’m not going to allow it.” And it took four months, and finally, in one of these outbursts, the child said to the mom, “My best friend’s dad raped me.” And when she was able to say what had happened to her, then it was this huge release and they were able to work with her through therapy. Had she been drugged, the problem would have just been masked. And they never would have known.
So in this community, I’m pretty well known and I do have people ask me for advice. I do have people that just want to tell me what’s going on. So I am approached constantly.
AM: And if someone listening to this podcast wanted to get in touch with you, is that something that you encourage?
MD: Yes. Actually, I do.
AM: And how would they do that? Do you have a website?
MD: They can email me. I mean, that’s what most people have done. And I don’t even know how they get my email; it’s not like I say, hey, call Mathy or, you know, touch base with her at mathy02@aol, but they do. And I have had contact with people as far away as Brazil, India, a lot from Canada. It would absolutely be OK for people to contact me.
AM: So how did you learn that Candace’s prescribing doctor was being paid by Pfizer to push Zoloft prescriptions? Was it through discovery in the legal case?
MD: Yes. It was through discovery. That’s how we found out. We didn’t find out. Our lawyer did and told us. And then I can’t even remember how it ended up on CBS, but it did. And Pfizer really didn’t like that. But it was – we were approached by CBS with Wyatt Andrews, and they came out and did a piece on that.
AM: And were there other troubling revelations of this sort in the discovery?
MD: That was probably one of the worst. They were two really big ones: not knowing what akathisia was and that she had been suffering from it, and in retrospect we knew.
When Candace died we got a $14,000 bill from the hospital. And that was it, just the $14,000. And I called the hospital and I said, “I want a total breakdown of everything this includes.” And when I did that, I found out that Candace was having severe headaches after everything they did to her. And I asked the nurse for Tylenol and she brought Candace these two blue pills. And I had never seen blue Tylenol. And I asked her – you know, I can still envision her hand with these two pills, and I asked her, “What did you give her?” And she said it’s Tylenol. But it didn’t look like Tylenol.
So six months after Candace died, I was still concerned about that, so I called the hospital pharmacy and I spoke to one of the pharmacists, and I said, “If you give a child in the pediatric intensive care unit Tylenol, what color is it?” And she said, it’s white. And I said, well, what if you use a generic? And she said, it’s white. It’s always white. They had given her four times the amount of Zoloft she’d ever had. And I witnessed them giving it to her. They billed it to us but then denied that they even had that prescription strength. They lied, denied, but they billed us for what I saw them give her.
They changed the orders. They would not give us our medical records. They had to be subpoenaed through the court. Apparently, they had ripped out several pages because it was so bad. They never told us they had enlarged her heart. So, besides akathisia and everything else, it had actually enlarged the left ventricle of her heart. It had affected her vision. She had no distant vision after this. And they never – they didn’t inform us of any of this. And we took the medical records that we had and we took them to the pharmacology department of the University of Maryland in Baltimore, and they said they were absolutely the worst records they had ever seen. And we asked to see copies of the original. We were told that they were destroyed and just put on microfiche, because it was obvious that they had changed the orders and had given her the 100 milligrams and then put in a later order, “Hold all medications,” but they changed the time from 1:00 to 11:00, by sticking in another 1, so it looked like they’d never given it to her, even though I saw them and even though they billed us. That was really upsetting. Really upsetting.
So those were the big things that we found out through discovery that we didn’t know.
AM: You mentioned earlier that until the day she died, until she went upstairs, she was a happy child, but she wasn’t the same child. Could you just kind of go into some more detail about those last few days?
MD: She couldn’t sleep. I actually had her with me at night because she was so restless, was still having hallucinations, which we didn’t know. I only found out because she told the psychiatrist on the Friday before she died on Saturday. She actually lied to the psychiatrist at the hospital. You know, I told you she was smart. And he even said to me, you know, “She is brighter than 98 percent of the adults that I see.” Well, she was smart enough to tell them exactly what he wanted to hear because she just wanted to go home. But she was still hallucinating. We had a couple of incidents when she first came home. You know, she saw the cat on top of the TV hutch and the cat wasn’t up there, although after she died the cat did go up there for the first time, and he was exactly where she had seen him. It was weird. But she couldn’t sleep. And like I said, she was in a much more agitated state. She was also very lethargic during the day because there – she couldn’t sleep. She never slept through the night after what they did to her. She could not sleep. She wasn’t eating. It affected her appetite. So we were giving her anything to try to get her to eat, anything that we thought that we could get her to eat, because she just wouldn’t eat. Her eyes would dilate, almost so that her pupil was the size of her iris, which gave her a very different look. One of her friends said yeah, she was wearing way too much makeup. She wasn’t wearing makeup. It was just that her eyes were so dilated they looked dark.
Those were the ways that she was different. You know, and she was just so tired. She was so lethargic. If I had to explain it, it was almost like she was getting over the flu. And she still went to school on Friday. They had a math test. She said yeah, sure, I’ll take it. And she got an 86 on it, just not even having been there all week. Her seat had to be changed at the front of the room because she couldn’t see the board. But we didn’t know that until after the fact. She thought there were bugs crawling on her skin and she kept trying to flick them away and it really scared one of her friends that said, “Candace, what are you doing?” She said, “I’m trying to get the bugs off.” “Candace, there aren’t any bugs there.” And she went, “Oh, yeah,” and giggled. But it really scared her friend. But again, we found that out about a month after she died, because people didn’t know. You know, we didn’t know to say watch for hallucinations or check her vision – we didn’t know. So we didn’t know about the left ventricle of her heart. We didn’t know about the destroyed vision. We didn’t know how bad the hallucinations were or that she was even hallucinating at school on Friday. We didn’t know. There were just so many things. But I would say that the restlessness during the night, the inability to sleep was also akathisia.
AM: You said that 2019 has definitely seen an uptick in the exposure that this issue is getting and the work that you’re doing. You’ve been getting a lot of calls and a lot of requests for your time. How often are you in a position now where you’re telling the story in this sort of detail? And is it painful doing that?
MD: At this point, it’s not painful. It’s exhausting. My pain has never gone away. And I still – I’ll see something, I’ll hear something, and I’ll cry because it was her. An example is I saw “Aladdin” last weekend. Her famous princess was Jasmine, and when she was little, she would wear a Jasmine costume and she would go around singing “A Whole New World” at the top of her lungs. And I’m watching this movie and I’m smiling and I’m crying, and I’m glad that it’s dark, because this was just last Saturday and I was crying because she should be here, because that was such a sweet moment, a sweet part of her. And I’ll never get over it. And I’ll never get over the fact that there was no reason for her death. There’s no reason that this beautiful, happy, loving little girl with only goodness in her heart died. It’s not fair. She should be a 28-year-old with her whole life in front of her and it’s gone. And I’ll never get over that. It will never be right. I can never make this right. I can never accept that she lost her life – I mean, I accept the fact that she lost her life; I’ll never accept why she lost her life. And she didn’t deserve it and we didn’t deserve to lose her. And if I can help someone else not lose their child by my knowledge that I got after the fact, then I’ll keep doing this till the day I die.
I want to be there the way that we didn’t have anyone there for us. And I’ll help anybody that needs help. And I’m not afraid. You know, with pharma, everything is intimidation. It’s really – it’s spreading the word. It’s doing what you’re doing. It’s all of us working together for a joint reason to protect other people in the way that we weren’t protected. We’re giving them knowledge that they didn’t have. And it helps.
AM: I wanted to ask if you wanted to speak about the impact that it had on your daughter and your husband, then and now.
MD: My husband withdrew for quite a while. But he’s great now. Just in the past year he’s been able to start talking. He’s been more available to do interviews with me when that never happened before. We’ve actually hosted people that have lost a child because of antidepressants at our house. We’ve invited them, just come and have lunch with us; we’ll be your sounding board. We’ll give you ideas of resources that we’ve had.
My daughter has been an activist from day one. She actually wanted to sit on a car at the hospital and hold a sign that said this hospital killed my daughter, which I didn’t let her do, but she went with me and several other families to protest in front of the White House one day. She has spoken out. When she was in college, she had students that would come to her to talk about their own issues. You know, she’s always been an activist herself. She’s written beautiful pieces on her blog about her sister and about her feelings with her sister. She actually won a humanitarian award with me several years ago because she was so outspoken herself and has continued to work with young adults that are going through this or have lost a sibling also. So she is very much an activist also.
AM: So what is the most important thing that someone listening to this can take away from your experience?
MD: There’s hope. It’s a blessing in being able to share, to prevent something else horrible happening to another person. It’s bringing awareness when pharma’s doing everything it can to sequester that awareness. It’s just being a sounding board for someone that feels like they have no one to turn to. And as I said, you know, you have a choice: You can be a victim, a survivor, and an advocate. You know, some people just want you to listen. But I feel like I’m a good resource. And I have a lot of people who just come back and tell me “Thank you; we didn’t do the drugs and we don’t plan to.”
Because Candace was so well known in this community, people are very hesitant to use meds. Very hesitant. And it really has saved kids, like, you know, this little girl that ended up being raped. They never would have found out. If you just masked her symptoms, they never would have found out what had happened to her. And I was so proud of that parent, and she did it because of Candace.
On January 10th Mathy wrote this in an email to me: “Today is the 16th anniversary of her death. In the past week and a half, I have been approached by three different people who told me that they know someone whose child had just lost a life to antidepressants, and would I be willing to speak to each of these three families. Of course I will, but presently all three families are in a state of shock and not ready. I know, personally, it took me about six months before I was strong enough to speak about it.” She adds: “I just find it devastating that the needless deaths continue, but if I can shine a light on their darkest days, I'll certainly try. The fact that people are seeking answers and are looking to me as a resource is inspirational.”
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts."
That's MISSD founder Wendy Dolin.
You've been listening to the “Akathisia Stories” podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast and subscribe. I'm Andy Miles and I'd like to thank Caroline and Mathy Downing for their time and candor, and I'd like to thank you for listening.