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New in-home, family-centered options for helping those with eating disorders differ from hospital or treatment centers. Diane and guests discuss these new approaches and their effectiveness.
- Dr. Ovidio Bermudez Medical Director, Eating Disorders Program Laureate Psychiatric Clinic and Hospital in Tulsa, Oklahoma
- Lynn Grefe C.E.O. of the National Eating Disorders Association
- Harriet Brown author of "Brave Girl Eating." She is also assistant professor of magazine journalism at Syracuse University. Her blog, "Feed Me!" covers food, eating disorders, and obesity.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Ninety percent of those who have eating disorders are between the ages of 12 and 25. Many parents seek help from hospitals or treatment centers, but a growing number believe an in-home and family-based approach works best. Joining me to talk about new treatment options for those struggling with eating disorders, Harriet Brown. She is the mother of a young woman who dealt with an eating disorder. She's the author of the new book titled "Brave Girl Eating." And Lynn Grefe, she's CEO of the National Eating Disorders Association. On the line with us, from the Laureate Psychiatric Clinic in Tulsa, Oklahoma, is Dr. Ovidio Bermudez.
MS. DIANE REHMAnd throughout the hour, we'll take your calls at 800-433-8850. Send us your email to email@example.com You can join us on Facebook or send us a tweet. Good morning to all of you.
MS. HARRIET BROWNGood morning.
MS. LYNN GREFEGood morning, Diane.
REHMHarriet Brown, I want to start with you because you have just written this book about your teenage daughter, Kitty. Tell us about her and how she is today.
BROWNWell, I'll start with the fact that she's in good shape today. She is recovered. She's back in college, which is exactly where we want her. She got sick when she was 14 for the first time. We went through a process with family-based treatment. She recovered and she had a relapse at 18 and is now recovered again. So it's been a process, but she is doing well.
REHMHelp me to understand how you first became aware that she was having a problem.
BROWNThat's a good question. We noticed things and didn't understand what we were seeing. When she was 14, it looked like a lot of anxiety, an uptake in anxiety and obsessive behaviors that we had never seen from her before.
REHMGive me an example.
BROWNShe came to me, actually, and said, I'm worried that I have OCD because I can't stop worrying about things. I couldn't get her to tell me things. Probably she was thinking about food things, but she didn't tell that to me. But she was crying a lot. She, you know, was very emotional and she wasn't eating a lot, although it took a little while for us to figure out that it was an eating disorder.
REHMSo she wasn't eating a great deal, but you didn't give a huge amount of weight, if you will, to that?
BROWNI think one of the myths I had in mind at the time was that -- anorexia did cross my mind, but I thought, she hasn't lost a lot of weight. It couldn't be anorexia. In her case, as it is very common for a young teen, she had simply not gained weight when she should have. So that failure to gain, she probably had a growth spurt, all kind of came together in a perfect storm. But I was looking for the ten pound weight drop and that really never happened.
REHMHarriet Brown, she's the author of the new book titled "Brave Girl Eating." She's also assistant professor of magazine journalism at Syracuse University. Turning to you now, Lynn Grefe, does what Harriet has described sort of apply to most young people?
GREFEThe behaviors, yes, there are certainly mood swings, changes, perfectionistic tendencies, especially with those with anorexia. So it is very typical, but, you know, it's confusing. Is it teenage behavior, you know, a typical teenager or is there a disorder going on? And when there's not a weight loss, it is harder to discover. But sometimes those same children will suddenly over-exercise. They'll become compulsive or obsessive compulsive about, you know, running further than they should or too many jumping jacks or different kinds of athletic behaviors.
REHMAre there parents like Harriet who simply think, well, you know, she is having anxiety, but she's not exhibiting any great weight loss so I won't worry, it's just a phase?
GREFEI think that Harriet's story is the perfect -- perfectly normal among most parents. You know, you just don't expect it. You don't think that this is going to happen in your own home. You're not really thinking eating disorders you're just thinking typically teenage. And so most parents are confused and it's one of the reasons that we -- our organization is especially concerned about educating pediatricians because often people like Harriet, moms will go to their pediatrician and say, something's not right. I'm seeing different behaviors. I'm also seeing some behaviors around food or over- exercise.
GREFEAnd a lot of doctors just plain miss it and they'll say, oh, she looks great to me or he looks fine. You know, all the girls are on a diet these days. And so we're really realizing that we have to educate doctors to help these parents.
REHMHarriet, tell me about Kitty's early experience.
BROWNIt didn't -- it didn't take us that long to figure out. We did take her to the pediatrician and by the time we got the appointment, I was pretty sure it was anorexia. She did lose two or three pounds. And it was at her eighth grade graduation, my husband and I were sitting in the bleachers across the room -- a room full of kids, like 400 kids, and she was the thinnest one in the room. And we kind of looked at each other and we didn't even have to say anything. It was like the scales fell away and we could suddenly see.
REHMSo what did the pediatrician have to say?
BROWNThe pediatrician said, get a therapist and try to get her to eat, which...
BROWNYes, which we had already been doing, the trying to get her to eat part. And we were not being successful at all. The more we tried to get her to eat, the more resistant she was and it became very adversarial and difficult and complicated. So we tried to get a therapist. It took a while. It wasn't helpful. And then, I'm a journalist. I did a lot of research, came across family-based treatment and knew immediately that's what we should do.
REHMAnd Dr. Bermudez, that's where you come in, talk about family-based treatment and what it involves.
DR. OVIDIO BERMUDEZWell Diane, good morning, first of all.
REHMGood morning, sir.
BERMUDEZI've got to tell you that, you know, there's a couple of things that are happening in the field of eating disorders that are of keen interest. And one of them is that we are very hard at work trying to develop evidence-based approaches so that -- you know, we've been dealing with this for a few centuries. And the reality is that there's been a significant move, you know, from an earlier -- earlier in the history of eating disorders from really, I think, blaming families. And we've come a long way and the National Eating Disorders Association has been a key player in really eroding that sort of shame and blame approach that had been in place so...
REHMSpell that out. Would you spell that? I mean, there was even a point at which some psychiatrists were implying that it was the mother or it was the father or it was, you know, somebody within the family with whom there was stress that was causing the child to have an eating disorder.
BERMUDEZSo if you go back, you know, several hundred years, even in the earlier account of anorexia nervosa, the statement was made that family and friends were the worst attendants. And, you know that came to exactly what you're alluding to, which was sort of the description of the anorexigenic mother or the anorexigenic family, either the relationship between the daughter and the mother that generated anorexia nervosa or a dynamic in the context of a family that created anorexia nervosa.
BERMUDEZAnd of course, you know, we also talked about schizophrenia like that. There was such a term as a schizogenic mother at some point in our history. And of course, that would be you know, unacceptable today, just like I think the term, when referring to an eating disorder, would be unacceptable as well. So that's certainly one -- something that has come along of keen importance.
BERMUDEZAnd I think the other one is, you know, the impact, the presence, the role of families in this cause to really move research along to really create evidence-based treatments and to really bring this to the forefront and with the attention and the funding and the backup that this deserves because it's really been affecting, you know, a keen, precious resource, which is our bright young people and we certainly need to remain aware of that.
REHMSure. I do want to, before you go any further, to differentiate between anorexia and bulimia, if you would, Dr. Bermudez.
BERMUDEZAbsolutely. And anorexia really refers to a symptom complex in which people become obsessively preoccupied with their size and weight, fears of weight gain are really overwhelming to them. They cut back on their intake. They often exercise too much. Their weight drops. It becomes to have physiologic effects, like loss of menses or arrest in pubertal development, cardiovascular changes, like low heart rate, low blood pressure and the like. And voila, you have the -- sort of the clinical syndrome of anorexia nervosa. Some of these patients will go on to binge and purge as well so there is subtype of anorexia that is just restrictive. And there is a subtype that will also, you know, overeat and induce purging or use laxatives or try to get rid of those calories by some means.
BERMUDEZBulimia, in contrast, is a syndrome in which patients tend to lose control, emotional control, behavioral control of their eating. They tend to binge, which in earlier times was called to gorge. You know, both seem descriptive, if you will, and that's why I mention it. And then,, they are ridden by guilt over and fear of weight gain and they induce purging via vomiting, laxative abuse, diuretics...
BERMUDEZ...or other modality so...
REHMWe'll take just a short break here. Dr. Ovidio Bermudez is medical director of the Laureate Eating Disorders Program.
REHMWelcome back. We are talking about various eating disorders. You've just heard Dr. Ovidio Bermudez describing some of them; anorexia, then a complication of anorexia and then bulimia. And there are an awful lot of young women who suffer from this problem. Talk about that, Lynn Grefe. And why is it so many more young women than young men?
GREFEWell, I do have to say that we're also having more men these days. There's been an increase of hospitalizations in a five-year period among males and it went up 37 percent. And for someone to be hospitalized for an eating disorder, that really has to be serious for them to be -- you know, need that kind of medical attention. But it is predominantly a female disease. But I really have to be on the record that the poor guys that have these illnesses, they really don't get spotted because people assume it's a female disease.
GREFESo they have a harder time finding places to get treatment because many of the treatment centers, many of the therapists, are used to handling and having group support sessions for females.
REHMAnd of course, the death rate among young women is much higher.
GREFERight. It's the -- anorexia has the highest death rate of any mental illness. That's any. I mean, think about that for a moment, more than depression, more than schizophrenia. And we find that between the ages of 15 and 24, females die 12 times more from that illness than all other causes of death.
REHMAnd now, how do they die?
GREFEPredominantly, either a heartache or it's suicide because it drives them literally crazy until their death. So those are the two top causes of death with anorexia. With bulimia, you'll find people have an electrolyte imbalance, potassium deficiencies and Dr. Bermudez can talk more about that. But actually, this past year I've met more families who have lost their children to bulimia than anorexia. So, you know, the numbers are staggering on the losses of life here and among young people. I mean, that's the hardest part of my job is talking to these families and realizing we were too late, that it's taken us a long time to say parents need to be part of the healing. They're not the cause. And we need to integrate the thinking here and get people better and we need to get them better faster so these illnesses don't kill them.
REHMHow and why, Harriet Brown, did you decide to opt for a family-based program and describe what that program consisted of?
BROWNWell, when we started looking into treatments, none of them felt right. My daughter was 14 years old. She was terrified out of her mind. She was -- she cried, mommy, don't leave me. You know, she was very regressed. She was very sick. The pediatrician suggested sending her away to a residential treatment center and there was no way we were going to do that. She was -- she needed us, it was really clear to me, and we needed to be part of it. So, like I said, we came across the info, we decided to do it. There were no FBT therapists in our town, but we had a great pediatrician and a great therapist who both said, okay, we're on board with you. We're going to educate ourselves about this and we're going to be your support team. So we did. And FBT has three phases, Family-Based Treatment. Phase one is weight restoration. And the basic idea is the parents love their kid and know their kid and they will do the best job at sitting at the table six times a day, getting that child to eat. How each family does it is different...
BROWN..because it depends on the child. But a point I want to make really clear is that this is not punitive. It's not force feeding. It is making sure your child gets what she needs with love, support and encouragement. So one of the things that we did, I sort of developed things I would just say over and over again, like a politician staying on message. And I would tell my daughter, I love you and I'm not going to let you starve. And that kind of became our mantra. So when we sat at the table and she was terrified about eating, you know, I love you, I'm not going to let you starve. You can do it. You can't go to school until you do it. We kind of used a whole toolbox of strategies to help with that.
REHMAnd, Dr. Bermudez, talk about how this form of treatment finally came to be. I mean, I've read so much about hospitalization and treatments that have been available up in Canada, for example, and all kinds of treatments, but out of the home. How did this in-home treatment evolve?
BERMUDEZWell, Diane, the Maudsley Hospital has really been very innovative throughout the years, you know, in the understanding and treatment of eating disorders. And this really came as a form of recognizing the need to empower families, really to empower them to be agents of change, rather than to, you know, discard them as potential agents of change. And so the reality is that this is a movement, this is a treatment approach that has, you know, very significant evidence base to support it. And I think that in eating disorders that is the future is to develop evidence base.
BERMUDEZSo really the difference is not to look for blame or to why, but to really move towards helping parents get their child to move forward and to recover the weight. There are other phases that Harriet mentioned. And, you know, some of that has to do with then, you know, sort of working through the issues -- empowering the child later, working through the issues that got them there and, you know, working on sort of the other concerns that an individual may have that finds themselves, you know, in the context of an eating disorder. Now, it's really important to understand, I think, that the way I -- at least, I interpret the literature right now is that, you know, this is really for young people, really adolescents with anorexia nervosa.
BERMUDEZNow, we have another whole host of people with eating disorders that, I think, also need, you know, care and an appropriate approach. So we have very, very young kids for whom this may or may not be applicable. We have, you know, older people, you know, women -- and not only women, but mostly women, in their forties and fifties and sixties for whom this may or may not be applicable. We have people with bulimia. We have people with -- you know, from different walks of life, different presentations that may -- I think there's still room for appropriate medical care when that...
BERMUDEZ...really becomes the crisis...
BERMUDEZ...appropriate psychiatric care, et cetera.
REHM...Dr. Bermudez, you mentioned Maudsley therapy. I think we ought to identify that as a family-based treatment, that was devised by Christopher Dare and colleagues at Maudsley Hospital in London in 1985, developed for treatment of anorexia in adolescents under 18 at home with therapeutic oversight by a trained professional. Harriet, did you have that oversight?
BROWNWe did have oversight, although, as I said, we didn't have it from people specifically trained. That's one of the issues with this treatment protocol, there's not very many therapists. But two years ago, Dr. Dan le Grange and Jim Lock, who wrote the manual and the parent book about this treatment protocol, opened a training institute. So they are now training therapists...
BROWN...around the country.
REHMTell me. It would seem that if you were sitting with your daughter six times a day, you didn't have time for a whole lot of other things in your life.
BROWNNo. And fortunately, that part of the process lasts only a couple months usually. It's a short very intense time. My husband and I tag-teamed it some, so that was helpful. But for me, that was much more preferable than sitting at the table with her three times a day and watching her not eat, watching her dwindle and diminish. So it's--it's an investment of energy and time up front that's so worth it.
REHMHow did you finally get her to start eating? Take me back to the first time you sat with her at the table.
BROWNThe day we decided -- the day after we decided to do FBT, you know, we had been, like I said, trying to get her to eat. I think what shifted when we decided to do it was -- and I think the great gift of FBT is it empowers parents. So we didn't run into a lot of blame, overtly, before that. But the overwhelming feeling in the field is -- and I have been told this by therapists, mom, don't try to make her eat. It's not -- she has to choose to eat. It's not your job. So when you do try to get your child to eat, you feel a little guilty about it really. You feel like, I'm not supposed to be doing this, but I can't stand watching her starve.
BROWNWhen we decided to do FBT, when I read the literature and the evidence on it and said, okay, yes, this is a role that I need to do, it was a paradigm shift for us as parents. And I think kids always know that, you know. And so when I said to her, it's not any longer, Kitty, I really think you should eat this. It's here's the plate. Here's what you need to eat because we need to get you healthy. And, I'm sorry, but you can't go to school until you eat this. We can't get up from the table 'til you eat this. I'll sit here all day if I have to. And/or she had been hospitalized briefly right before that for dehydration. The doctor there wanted to give her a feeding tube. She started eating in the hospital so she didn't get that. So that helped, too, at the beginning. We said, okay, if you can't eat this we will take you back to the hospital...
BROWN...and get the tube.
REHMWhat was on the plate the first day you sat with her?
BROWNIt was a bowl of Cheerios with a few strawberries and some milk. It was a very small meal, actually, because you have to start small.
REHMDid she begin to eat?
BROWNNo. There was a lot of chat about it first and, you know, then she said, oh, it's too soggy, I can't eat it. I had to pour a second bowl. And at that point, eventually she did eat it.
BROWNAnd it was terrible for her. And I think that's part of what I learned was that it wasn't resistance. It was sheer terror for her.
REHMWhere does that terror come from, Lynn Grefe?
GREFEOh (laugh) , that's like the meaning of life question here. Where does the terror come from? It just gets engrained. These are biologically-based illnesses. So that's -- when we say it's not the parents' fault, it's certainly not. This combination of personality traits, the obsessive compulsive or the anxiety, it all comes together like a perfect storm. And it comes together -- and therapists around the country say people are born with the gun and life pulls the trigger. Okay. I didn't make that up. So something happens to a young person, whether it's they suddenly become self conscious of their weight, somebody teases them. Paula Abdul always told a story -- 'cause she had an eating disorder -- and she said it evolved from being in a ballet class where the teacher said to the whole class, if little chubby Paula can do this, the rest of you can, too. And she always remembered that in her mind as a triggering moment. Did the ballet teacher create her eating disorder? No. But it was a moment in time where she started to feel self conscious.
GREFEBut we don't know what causes the fright, but it builds and it is terror. They're afraid of the food. It is like the enemy. Harriet and I were talking before this and I said, I compare it to putting a football helmet on your head because you can't see much. There's bars in front of your vision. It takes over your whole head. Well, an eating disorder takes over all of your thinking and you can't really think well about anything else.
REHMLynn Grefe, she's CEO of the National Eating Disorders Association. And you're listening to "The Diane Rehm Show." We have so many callers, I want to go to the phones. First to Lincoln, S.C. Good morning, Jennifer. You're on the air.
JENNIFERGood morning, Diane, and thank you for doing this show.
REHMYou're most welcome.
JENNIFERI wanted to call. I have suffered from an eating disorder, probably two eating disorders, since I was 15 years old. I'm now in my forties. And mine began slowly. By the time I graduated from high school -- I'm about 5'6. I weighed 90 pounds. My mother thought that I just liked to diet. I went to college. My weight continued to sort of fluctuate up and down and so I never was diagnosed with an eating disorder until I was in my mid-twenties. I was treated on and off for anxiety, but because my weight wasn't so low -- it was often around 100 or 110 pounds, people thought, well, she's just a small person.
JENNIFERAnd I found that the treatments that I went through were really appalling, things that were psychologically damaging to me. Treatments like stand in front of a mirror naked until you don't have a negative thought. Well, tell me a woman who can stand in front of a mirror naked (laugh) and not have a negative thought. Or put so much food in your house that you can't possibly, you know, eat it all. And, you know, 'cause I had food fear, but I also had bulimia. I had a combination of anorexia and bulimia. Now, in my mid-twenties, I did eventually get sort of over the anorexia, but the food obsession and the bulimia never went away. But again, because the external -- I gained quite a bit of weight and became an overweight person, which I am today. But because I was overweight, no one ever thought I had an eating disorder.
JENNIFERAnd it wasn't until after my son was born that I began experiencing severe anxiety again. And it's not been until just this past month when I had finally gotten a therapist who I felt comfortable enough with telling that I had bulimia and now we're just starting the process over again. And so what I'm wondering is, you know, how effective are the treatments that are out there and are there a lot of women like me who really don't get fully treated? We sort of get a Band-Aid so we go on and we survive, but we still deal with these obsessive compulsive thinking patterns about food and have bulimia and have severe anxieties about food.
REHMSure. Lynn Grefe.
GREFEWell, I mean, it's painful to hear stories like that.
GREFEAnd by the way, you are among thousands and thousands of other women and men that could tell the same story. The people don't get diagnosed, first of all, early on and there used to be such shame. And I said we have to take shame out of our vocabulary. I want to treat people with eating disorders. They should be getting flowers and cards from us and support and love from their families. So I'm really sorry that you went through that. You know, there are different treatment professionals. There's different doctors and they have different styles. Some of those stores you describe are hard. But there are some good treatments and -- for adults and Dr. Bermudez would probably like to address this also.
BERMUDEZAbsolutely. And, you know, sadly enough, your story is not an uncommon one and so a couple of things are important to mention. Lynn has alluded to this. You know, early recognition and timely intervention are still key features, regardless of the age, the gender or the type of eating disorder behavior. And the second aspect of this is the whole idea of evidence-base. Treatment approaches that have been shown to work, to be effective, rather than just everybody doing what they feel would help a patient. So, you know, we do need to continue to offer a whole variety of treatment approaches.
BERMUDEZBecause this is -- there's many ways that people come down this path.
REHMBut what I want to know is how Jennifer can get help at age 40?
GREFEI would recommend, actually, she go to our website and we -- our website is www.nationaleatingdisorders.org. And on that, there's questions you should ask. When you look for a treatment professional, be a smart consumer. Don't just pick the first one in your neighborhood. And ask the right questions and interview the person, the treatment provider.
REHMLynn Grefe. She's CEO of the National Eating Disorders Association. Jennifer, I wish you good luck. Take care of yourself. And we'll take a short break. We'll be right back.
REHMAnd as we talk about eating disorders, Eileen in Orlando asks, "is there a genetic component to this disease or is it largely behavioral?" Harriet?
BROWNIt is absolutely largely genetic and neurobiological. We now have access to functional MRI scans where we can look into the brain, see what parts of the brain light up while people are doing different tasks. There's some fascinating research being done out at UC San Diego on this. And basically, what you find when you look into the brain of not only someone who's acutely ill with anorexia, but someone who has recovered and been recovered for years, their brains work differently. The neurotransmitter systems are wired differently from birth.
REHMHere is an email from Steph in Morehead City, N.C. She says, "I have a question about my 9-year-old. She's recently been making comments that she is fat. These comments are troubling, but to some extent, I think, normal. When is it appropriate to be concerned and what's the best way to respond?" Lynn.
GREFEI believe it is appropriate to be concerned. And we should all stop talking about our sizes and our weights and talk about the size of our heart, not the size of our hips. So if that was my 9-year-old, I wouldn't be alarmed, but I would certainly try to redirect her attention onto who she is as a person, rather than to the size of her body. And teach her about, you know, her awareness to other friends and to not be critical on how people look. It is the society we're in, but we've got to start fighting back. We want people to be healthy. We need to promote health, not size.
REHMBut, you know, thinking about a 9-year-old child's friends, aren't most of them thinking about how fat I am or how thin I am? Harriet.
BROWNUnfortunately, a lot of them are.
BROWNAnd that's why, I think, they need guidance on that because they get that from the culture. They get that from each other. And if they don't hear counterbalancing comments like, you know, yes, it's about how healthy you are, not what you look like, not what you weigh. What do you like to do? Not worrying about what you look like."
REHMAll right. To Jennifer here in Washington, D.C., good morning, you're on the air.
JENNIFER TWOHi, Diane, thanks so much for doing this show. I am a -- I'm a recovering eating disorder, I guess, individual. I had -- I actually developed anorexia nervosa at, I guess, somewhat of a -- a late age of -- in this discussion about 20 in college. And I found, being that I was above 18 and sort of an adult, that when my parents -- and they were concerned from -- from the very beginning and actually noticed that I was sick long before anybody else did. I found their involvement in my recovery to be quite -- felt very controlling and felt as if they were trying to force me to recover and to taking somewhat of the credit for any decisions I made towards recovering.
JENNIFER TWOAnd I was just interested in hearing your panel's thoughts on -- we've talked about parents for younger eating disorder patients, how they can be involved. But when you get above 18, the line of where your parents can and cannot be involved in your recovery becomes a little bit blurry and it can almost be, in my experience, a detriment. I really, in order to recover, needed to take control and feel like I had ownership of my own recovery. And thankfully, I have so just wanted to hear their comments on that subject.
BROWNI think that the -- my daughter, at 14, would have said exactly the same thing as you, Jennifer. I don't think that sense of parents interfering has to do with age so much as it does with the disease. Anorexia is what we call anosognosic, meaning you cannot -- your brain, literally, does not perceive that you have an illness until quite a ways down the line. Having said that, I think it is different for a 14-year-old and an 18-year-old because in my book, I talk about the process that we went through when my daughter was 14. She relapsed at 18. We went through a similar process, but we did talk more with her. She had more input in certain ways. But the bottom line was she was not in a position to make the best choices for herself at the beginning of the process. As the process continued, she took more ownership. And I agree with you that that's an important part, but you can't do it at the beginning most of the time.
GREFEI absolutely hear what this young woman is saying and, I guess, it goes back to there are different treatments for different people, you know, and one size doesn't fit all. And, you know, what Harriet's talking about is just -- it's wonderful, it's brilliant, it's evidence-based and it's saving lives right now. But when somebody is older, they need different -- sometimes different types of treatment and they need ownership. This woman needed to own this on her own and get well, but with the love and support of her family, but not them taking ownership.
REHMTell me or help me to understand, Lynn, what percentage of those who have an eating disorder still go the hospital route and how many are now going the family therapy route?
GREFEI honestly don't have numbers...
REHMYou don't know.
GREFE...like that. But what's good about you doing this program today is we're letting more people know about the family...
REHMThere are options.
GREFEExactly. There are options. And it would -- certainly would be -- if I had a young child, it would be one of my first options, assuming she was medically -- or he -- medically stable. That's the important thing. And assuming I’m working with a good, talented, you know, therapist to follow the treatment. But you have to find what works best...
GREFE...in your particular case.
REHMAnd, Dr. Bermudez, how many therapists are you seeing training for this kind of work?
BERMUDEZDiane, unfortunately, I don't think anybody really knows the answer to that. I can tell you that, roughly, two-thirds of patients with eating disorders are treated successfully on an outpatient basis and about a third will go on to require inpatient hospitalization or other approaches. Of those two-thirds that are treated on an outpatient basis, it is not clear what modalities are being used. I don't think that that study has been done and it needs to.
REHMIt needs to be done.
GREFEDiane, may I something here?
GREFEThe public should be aware that when we talk about inpatient treatment for an eating disorder, we're talking about somebody with a serious eating disorder, but that can cost $25,000 a month.
GREFEAnd it can last for three to four months and sometimes seven months. So -- and insurance doesn't cover all that. So if there are other options that we now are finding, then we should applaud those and, as long as they're under guidance -- but we also have to know, not every family can do what Harriet and her husband did. You know, I've seen 8-year-old girls...
GREFE...on a feeding tube that needed to be on a feeding tube.
REHMWell, did you have to give up your job, Harriet?
BROWNNo, I did not. And I think there are many ways to make this work. I had a great boss who was flexible. My husband was a freelancer so we made it work. But one of the things people often ask me is, well, you had such a good family. You know, my family couldn't have done this. And I really do want to say that obviously family-based treatment is not for families where there's abuse of any kind. But most families can do this. You don't have to be "good", quote/unquote. You don’t have to be special. You have to love your child and be willing to just hang in there with her.
REHMAll right, to Rika who's in Grand Rapids, Mich., good morning.
RIKAGood morning and thank you, Diane. This is a very important topic. I'm 31. I developed -- I'd say I developed -- I don't know. I started becoming an active bulimic when I was 13 and it's only been in the last probably three years that I've been able to manage it. And by manage, I mean, I'm no longer purging and I think that's a huge step.
GREFECongratulations. Good for you.
RIKAThank you. But I am a mother to a 10-year-old little girl and she, as much as I try very hard to be diligent about never talking negatively about my body around her, I'm sure things slip out, especially, you know, in the younger years before I got a better handle on things myself. And now, she's -- I think a lot of this is just she's at the age of -- another person said that, you know, they have a 9-year-old. She's 10 and sometimes I hear, you know, my thighs are fat or this, that and the other. Because I'm open with her and I have been honest about my eating disorder past, how do I address these things without sounding hypocritical to her? I think, you know, that's -- it was tucked around that, but we've never really addressed that issue. As somebody who has the eating disorder, I don't -- I think it's like all addictions. It never goes away. How do I talk to her without being hypocritical?
GREFEMay I address that? Yes. Well, first of all, you know, you didn't do something bad. You were sick. And that's where we need to see change in this entire dialogue. You know, we don't get mad at people and be ashamed if they say they have cancer or leukemia. Well, you know, you don't need to be ashamed. You were ill. Your daughter needs to understand you had an illness. She also needs to understand that there's potential it could run through your family.
GREFEAnd there's also, by the way, people who are recovered with an E-D at the end. You know, we hear about people in recovery for years and years, but there are people who actually beat this -- dead and gone and go on and live, you know, fulfilling lives.
BROWNLots of people.
GREFELots of people. Now, could you have a relapse? Sure, you could have a relapse of breast cancer, too. But I really think we need to view this as an illness that it is. So you should talk to her as an -- that you had an illness and you don't want her to have it and so that's why you're probably a little more sensitive to all these subjects.
REHMAre there any medications, Dr. Bermudez, that are used in this treatment?
BERMUDEZWell, there are no medications specifically for anorexia nervosa. There are medications to treat co-morbid or coexisting psychiatric conditions, like depression, like anxiety, that can be quite helpful in the right context. So I think that the whole topic of medication use in eating disorders has to be a careful one. Fluoxetine or Prozac has been shown to be helpful for patients with bulimia. But, again, I think we have to be very careful in our patient selection, like for any intervention that we undertake.
REHMAll right. And thanks so much for your call, Rika. I'm asked to remind the audience that this is not just a teenage onset problem. Chris in Atlanta, Ga. you're on the air.
CHRISYeah, hello, Diane, thanks for taking my call.
CHRISI've got a kind of interesting perspective on this because my oldest daughter developed anorexia when she was 12 years old and this was 20 years ago. And we were very lucky at the time. In fact, we were living in Massachusetts and she was eventually granted admission to a specialist facility attached to Boston Children's Hospital and supported by Harvard Medical School. And it was somewhat experimental, but at the time, what they did, in fact -- first of all, they put her on Prozac the minute she went through the door. They put her onto fairly heavy doses of Prozac. Secondly, they were treating it as a depressive illness. And in this unit, there was 28 patients, two wards of 14 beds between the ages of 7 and 18.
CHRISAnd they weren't all suffering from eating disorders. A number of them were suffering from other depressive illnesses -- childhood illnesses. But they admitted it to her and they literally took control of her from the minute she walked in. There was a team of a doctor, a psychiatric nurse and a therapist assigned to each patient and every minute of every hour of every day was managed and monitored and they used a carrot and stick approach. She was in there for two months and to the point on health care insurance, in fact, it was -- at the time, my insurance company considered this to be a psychological disorder and would not cover a penny of it, although I prevailed and eventually covered 100 percent -- $1,000 a day -- $60,000 just for the hospital care.
CHRISAt one point, she was so sick, in fact, she lost almost 50 percent of her body weight and was admitted into Children's Hospital into a life support intensive care unit because her heart was failing. The reason I mentioned this, was now she's completely cured. She came out of that unit. We also relocated, in fact, and that may have had a bearing, I think, on the background situation. We were moving from Massachusetts to Atlanta. So new school, new friends...
CHRIS...and she started a new life, basically, and never looked back. She's now a 32-year-old mother of two. No relapses, very, very healthy. But we almost lost her.
REHMOh, Chris, I'm so glad to hear that she is well, that she is mothering her own children. You know, what works is what you have to do.
CHRISYeah, I mean, the doctors...
REHM...and in his case, hospitalization worked.
REHMIn your case, the family-based therapy worked. Such a...
CHRISAnother point that you mentioned about...
REHM...An uplifting story, Chris, I'm glad to hear it. And you're listening to "The Diane Rehm Show." We have a different story from an emailer who says, "Our 14-year-old daughter was admitted to Laureate, where Dr. Bermudez is, last year at that time -- at this time. In trying to treat her at home, she would throw her food, become irate and stop talking to us. She's an extrovert and treatment that involved a group of peers was essential to her. Could Dr. Bermudez discuss this point?" Please, sir.
BERMUDEZAbsolutely, Diane, I think that there are families and there are patients for whom the family-based therapy, it doesn't work. And we've seen examples of that. So with that said, if you ask me -- if I had a 14-year-old that fell prey to anorexia nervosa today, where would I start? I would start with recognizing it early. I would start with the family-based therapy approach. And if that did not work, then I would move on to a group approach, to a milieu-based -- to an inpatient setting and perhaps medication and then go from there.
BROWNYeah, I just want to point out that a guy named Ansel Keyes did a lot of -- did a study in the late '40's, "The Semi-Starvation Study". And what he showed was that during the process of re-feeding people who have starved, you see all those same things. And these were people who were not anorexic to begin with. But you see depression, you see anger, you see anxiety so great, one man cut off some of his own fingers. We saw depression, anger, anxiety through the process of re-feeding our daughter. Those things are a normal part. It seems to be a physiological by-product. The body does not like to be starved and then re-fed. So just -- I'm sure there were other reasons why a different approach was appropriate for the caller, but those things alone should not discourage any family from doing this.
REHMLynn, finally to you. You said there are questions to ask a potential treatment provider. What should they be?
GREFEWell, I would first want to make sure they've really been trained in eating disorders because just to go to a therapist is...
REHMIs not going to do it.
GREFE...is not the answer, no. It's its own specialty. So that's number one. I would want to know that they're members of the Academy for Eating Disorders. I think that that's really important. Or they're -- they've been trained and received some training from IAEDP, which is an International Association of Eating Disorder Professionals. I would want to know that. I'd want to know if it's a treatment center, what's the age population? If I’m a 13 -- if I have a 13-year-old daughter, I don't want her going in a treatment program and support groups with 20-year-olds.
GREFESo you -- as good as that program could be, it probably will not be effective unless that person's in a population that's similar to that individual. Just like men should be in programs for men and older women in their 30's they don't want to be in -- in with teenagers. There are different issues because the eating disorder rarely travels alone. We have to remember that. And it is accompanied by other anxieties or depression and life journeys. So you want to share those things.
REHMLynn Grefe, she's CEO of the National Eating Disorders Association. Give us that website again.
REHMAnd Harriet Brown, she's the author of "Brave Girl Eating," a book that has just been published. Her blog, "Feed Me" covers food, eating disorders and obesity. And Dr. Ovidio Bermudez is Medical Director of The Laureate Eating Disorders Program. Thank you all so much.
BROWNThank you, Diane.
GREFEThank you, Diane.
REHMAnd thanks for listening. I'm Diane Rehm.
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