ED Matters Episode 2 – Pamela Carlton, M.D.
Today we talk with Dr. Pam Carlton, and chat about helping parents navigate the world of eating disorders, including the role parents play in recovery. The beauty of this episode is that everyone who listens, will learn something from it and be able to put some of these practices into action.
Pam’s book –
Full episode transcribed –
Kathy Cortese: Hello and welcome to ED Matters. I’m Kathy Cortese, your host and it is my pleasure to welcome our guest today, Doctor Pamela Carlton. Good morning. How are you Pam?
Doctor Pamela Carlton: Good morning. I’m great. Thank you so much for inviting me.
Kathy: I’d like to start us off with reading your bio. Pamela Carlton MD is a founder and director of the Carlton Clinic for Eating Related Disorders located in Mountain View, California. The clinic focuses on medical treatment and care coordination for children, adolescents, and adults with eating disorders. Doctor Carlton is also very active in physician education related to eating disorders and disordered eating as well as working with families and understanding eating disorder treatment and compiling appropriate treatment teams for their loved one. Doctor Carlton received her medical degree from the University of Southern California and did a pediatric residency and adolescent medicine fellowship at Children’s Hospital, Los Angeles. Prior to founding the Carlton Clinic, Doctor Carlton was on the clinical faculty in the division of adolescent medicine at Lucile Packard Children’s Hospital at Stanford where she developed and directed their adolescent eating disorder, parent education and support program. She’s also the author of Take Charge Of Your Child’s Eating Disorder: A Parent’s Step By Step Guide To Defeating Anorexia And Bulimia. Welcome.
Dr. Carlton: Thank you.
Kathy: Our topic for today is one that Doctor Carlton has spent tremendous time with and has great passion for. And it is helping parents navigate the world of eating disorders. To start us off, I’m wondering what you feel the essential components that are necessary for parents to most effectively navigate the world of eating disorders.
Dr. Carlton: I am very excited to discuss this topic because it is crucial for parents to understand the world of eating disorders when they’re thrown into it. When a child is first diagnosed with an eating disorder, it can be unbelievably overwhelming to the parents ’cause they’re thrown into completely unfamiliar territory. One of my patient’s moms described it as she felt like she was Alice falling down the rabbit hole and everything was just new. So the first thing that I think is important for parents is to understand what eating disorders are and what eating disorders aren’t, also to understand what treatment means. So why treatment is important and what are the different components of treatment and types of treatment. To understand how to compile a treatment team. Who are the different players on the treatment team. What can they expect from treatment and from the treatment team and also the importance of taking care of themselves. Unfortunately, a lot of times that comes last and it really can’t but how to get support for themselves because it’s a long journey.
Kathy: You’re making my part very easy by breaking that down. Let’s start off with point one, understanding what eating disorders are and are not.
Dr. Carlton: This can be a tough one for parents. Eating disorders, as many of us know, are psychiatric illnesses, however what isn’t typically discussed is that they have very significant medical and nutritional components. Eating disorders come, I would say, in all different flavors in that there are people who restrict, there are people with eating disorders who are binging and purging, people who are over exercising, and one of the eating disorders that we’re starting to recognize more and more, are what we used to call the really really picky eaters. Where we’re now finding that when kids are cutting out more and more foods for whatever reasons, the medical complications are the same as if they just stopped eating. So, for parents to understand that their child’s eating disorder is unique to their child and they might hear stories from all of their friends about other kids with eating disorders that they know but for the parent to understand, they need to figure out the best treatment and best path for their individual child.
Kathy: Yeah. Yeah. An important cue. Can you help us, what does treatment mean? There are different types, there’s different levels of care. It can be pretty puzzling out there I would imagine for a parent.
Dr. Carlton: It absolutely can and I think sometimes when a child is diagnosed with an eating disorder, terms get thrown around. Residential, PHP, IOP, outpatient, and it is difficult initially to understand. My take on it is, unless someone needs to be medically hospitalized, most kids will start at what we call an outpatient level of care. Working with the treatment team where there’s members of the team that are dealing with each aspect of an eating disorder. So where there’s a provider who’s dealing with the psychiatric aspect, a provider that’s dealing with the nutritional component, and a provider that’s dealing with the medical component. So understanding what the possible treatments are. There’s different modalities of treatment and also understanding who the players would be.
Kathy: And I think you speak to this very complex nature where an eating disorder doesn’t just affect one aspect of a person’s being. We’ve got these different components, hence the different need for the treatment providers to be involved. Tell us more about the different types of treatment, please.
Dr. Carlton: Sure. As I have mentioned initially, most people start off in an outpatient level of care. And unfortunately, there are some kids where even with a great treatment team — and we’ll go into exactly who those members are, but even with a great treatment team, they’re just not making the progress they need to make. They just need more help and at that point, they might go into a program where there could either be what is called IOP or an intensive outpatient program work. It might go after school for a few hours, two, three, four, possible even five days a week or if that’s not enough, going there full days or unfortunately in some really serious cases where this is not the majority of people would potentially need to go into a program where they would stay there to get the treatment. But initially, what most parents are faced with on diagnosis is an outpatient team. But unfortunately, it is often the parent’s responsibility to compile it. To figure out who the members are, to find them, to find the appropriate members and to make sure they’re working together. And that’s a lot for somebody who’s in new territory and trying figure it all out.
Kathy: Right. Earlier you had mentioned a psychiatric component, a nutritional component, a medical component, and obviously this helps identify who we need on the team. But could you please speak to each of the potential people that might be involved on a team.
Dr. Carlton: Absolutely. One of the things that is important when looking for members of the team is that they are people who have experience with eating disorders and it really is the parent’s right to interview these providers. So to come up with potential providers, the potential medical provider and talk to them on the phone or sit down with them and really explore what is their experience with eating disorders. What is their philosophy especially if your child as an individual has specific needs. Maybe child has food allergies, maybe your child is an athlete. So really understanding how they would deal with your child in particular. And one of, in my opinion, the most important things is how they’ll deal with you. Are they going to include you as an important member of the team and really make you part of your child’s treatment.
Kathy: You’re obviously an adolescent pediatrician and you recognize the role of parents in any child’s well being, eating disordered or not. So I’d love for you to just sort of push that point home a little bit more. How important it is to have the parents involved, educated, onboard, et cetera?
Dr. Carlton: It is absolutely crucial because every member of the team is an expert in their own right. The doctor is an expert in the medical aspects. The therapist is an expert in the psychological aspects. You’re gonna have a dietician on the team who’s an expert in nutrition. You’re an expert in your child. So it is not possible for the team to really provide optimal care for a child without the parent being on the team and helping guide them as to who your child is, what motivates your child. You’re the one who comes home from the appointment and is spending 90 percent of the time with your kid. You’re the one who knows how treatment is working and the team needs to look at you as a resource.
Kathy: Yeah. Great. Great information. How would a parent go about compiling these different members? How do they — Who do they start with? How does it happen for them?
Dr. Carlton: The hope is that if a child who is diagnosed with an eating disorder by the pediatrician, that the pediatrician would be able to give some kind of referrals. Unfortunately if you’re not in a metropolitan area, the possibility of your pediatrician having a list of all the eating disorder experts in the area, is pretty low. So what you wanna do is at least find one of the providers who really is an eating disorder expert. Maybe it’s a therapist and getting referrals to the other providers from the therapist. And unfortunately if you have a medical provider or a nutritionist who’s not an eating disorder expert, making sure that they are open to learning, open to following the lead of somebody who does have more experience. There are also organization — There is the National Eating Disorder Association and they have an unbelievable amount of information on their website with possible providers, with a ton of information both for the parent as well as for other providers and there is a wonderful booklet also through the Academy for Eating Disorders, that is information for primary care providers that helps them navigate and understand some of the medical complications and what they need to be checking for. So unfortunately, the parent might actually take on some of the role of guiding providers and as a medical provider, I’m looking at it as my responsibility to hopefully disseminate information to other physicians nationally. So there are more physicians who know what to look for and know what to do.
Kathy: Thank you for that. Treatment team means there’s more than one person. There’s a number of professionals involved. Can you speak to the — let’s say the role of communication in a treatment team.
Dr. Carlton: Thank you so much for that question ’cause it is crucial. It is not possible for you or for your child to get appropriate care if your team isn’t talking to each other. And unfortunately in a lot of circumstances, the parent ends up kind of being the quarterback of the team. And it really shouldn’t be that way. The hope is in an optimal situation, one of the team members will take on that role. And the treatment teams that I work on — and that’s my job and I take on that role and I make sure that every team member gets information to all the other team members after every appointment. And I think it’s important for a few reasons. One is as a medical provider, I need to know what’s going on nutritionally. I need to hear from the therapist if there’s something going on that could affect the patient medically that maybe the patient isn’t telling me. And the dietitian and the therapist need to know how they’re doing medically. So communication is very important for that reason but also it is extraordinarily difficult as a patient or as a parent, to be getting three completely different opinions and maybe sometimes they’re contradicting each other. So if one person is saying “Oh well it would be so much better for your child to go for a 20 minute walk each night. It’s good for their head. It might help them eat a little bit more.” And the doctor is saying your child’s heart rate is so low they could actually end up in the hospital if they exercise. What are you supposed to do? So you need to be getting the same advice from everyone and you also can hold their feet to the fire. A parent can demand a team meeting where everybody is talking. Optimally sitting in the same room but possibly conferenced in on the phone so you get everyone on the same page.
Kathy: And so I think one of the things we’d like to support is empowering parents to know that that is part of good treatment, to know that communication is supposed to happen and they have every right to demand that.
Dr. Carlton: They absolutely do and honestly, if your child or someone’s child is working with a team and you demand that, and one of the providers says “You know what, I really don’t have enough time. I have a full schedule. I don’t have time to make those phone calls.” Probably not the right provider for your child.
Kathy: Yeah. Yeah. Good advice. Anything further on the parent’s role as a member of the treatment team?
Dr. Carlton: I think one thing that is absolutely crucial is the parents being able to take care of themselves. And eating disorder treatment is a very long process. I describe it to families as this is a marathon. It’s not a sprint. And you have to make sure, a parent has to make sure that they’re getting the support that they need and that they’re able to also make sure that the rest of the family is getting the support they need. So I usually recommend looking for a local support group. I know I mentioned the National Eating Disorder Association before and they have wonderful parent support through there. A lot a of parents find it helpful to work with a therapist during this process not because there’s anything wrong with them or they did something causing this, but because this is a brittle process and they can use the support and also feeling free to call on their friends and their support system to help them and also maybe help with the rest of the family. Maybe picking a kid up from school or taking the other child to soccer practice. Because unfortunately, parents are spending a lot of time taking their child with the eating disorder to and from appointments.
Kathy: That’s another piece that I think parents often struggle with. They may have other children that they want to be with, share time with, have fun with. It can be pretty tough when you’re taking someone to the next appointment. Do you have any thoughts for parents on how they might cover that part of their world?
Dr. Carlton: It is really crucial to cover that part and there’s been research looking at the impact of eating disorders on siblings and they’re tremendously impacted. And if a parent, if the family is lucky enough to have two involved parents, tag teaming is important. Both for the sanity of the parents as well as the other kids. To really make it a priority to give the other children the attention and the support that they need ’cause their world is rocked. Dinner time which possibly used to be this wonderful family time where they’re laughing and talking about their day, is a battlefield. So making sure that they get the support by having everybody involved so it doesn’t all fall on one parent is crucial.
Kathy: So perhaps some stories of the good endings. Some maybe parental feedback you’ve received from parents that you’ve worked with who could tell you about the good news or their kid told you about the good news, so that people recognize that recovery is absolutely possible. We wouldn’t be having this conversation if you didn’t believe in it. So I’m hoping you can tell us a bit about some of those uplifting stories.
Dr. Carlton: Recovery is absolutely possible and I have more adolescents that I can count who come in very very sick and get through the process and go on to live really successful lives. I mean one person that I’m thinking of initially, is this young woman that I started seeing about a year ago who is a dancer. And at the first appointment, it was devastating to them. I told them she has to stop dance right now and she actually was a hair’s breath away from going into the hospital because of the cardiac effects, the heart effects from the eating disorder. Last weekend, she actually competed in a national dance competition with her team from school. They came in second and this was a national competition and oh my gosh. This kid in my office just beaming ear to ear when I remember really doesn’t feel like that long ago that she and her parents were in tears, she’ll never dance again. This is what’s happening and it was beautiful.
Kathy: It is beautiful. Our listeners can’t see but I can see your face and how that has affected you in a very emotional way.
Dr. Carlton: Absolutely. It is emotional and I could never do what I do if I didn’t see all these endings. These kids who have had so much taken away from them by their eating disorder and when they get it back, the intense joy. Watching them look back on this journey and not that they would’ve wanted it in a million years but seeing how much stronger it’s made them and that they’ve come out of it with such a better sense of self and resiliency, that is truly unbelievable.
Kathy: Doctor Carlton, I want to thank you so much. You bring a tremendous amount to the field and I’m sure you bring a tremendous amount to your parents and your patients. Thank you for your time.
Dr. Carlton: Thank you.