Treating Eating Disorder Must Involve the Entire Family

Here is a great article/Maudsley summary that appeared yesterday in the Washington Post: Family Almanac: Treating daughter's eating disorder must involve the entire family.

My favorite quote from the piece:

"With help, your daughter can turn off that trigger, but she'll probably turn it off sooner if you can find a Maudsley-certified therapist who uses family-based treatment (FBT), which was developed to treat anorexic teenagers in London and is used at some of the best U.S. hospitals.

Studies show that anorexics in this intensive outpatient program can usually overcome AN in six to 12 months -- instead of several years -- and that 80 to 90 percent of them will still be fine five years from now. This is a much better outcome than patients have in other therapies, perhaps because parents are part of the treatment, as parents of sick children always should be."

Huffington Post

I loved this article in yesterday's Huffington Post by Laura Collins: She's Anorexic and You're a Bad Mother.

Brain Lock

Free Yourself from Obsessive-Compulsive Behavior

(Jeffrey M. Schwartz, M.D.)

I've had this book for about six months now. It has been very slow reading, but I finally finished it this morning. Brain Lock was recommended by my son's therapist to help with the OCD component of his anorexia. The book is written for adults not kids, so I was the one trying to interpret and help my son utilize some of the recommendations.

Schwartz begins by explaining the medical background of OCD. He takes the approach that OCD is caused by a brain malfunction (which I appreciate). The book then recommends four steps in dealing with OCD: 1) Relable, 2) Reatribute, 3) Refocus, and 4) Revalue. I understood each of these principles for the most part. However, they blurred together in many ways. The book uses case studies to illustrate each principle. These were helpful in many ways.

Once I finished reading about the four steps, the book finishes with in-depth stories of many of the case studies found in the book. The stories were interesting, but I thought they were discouraging at best. Most of the main subjects were still failing in their lives because of the OCD -- not great case studies, in my opinion.

Schwartz's suggestions for dealing with OCD were very helpful if I boiled them down to just a few main ideas: 1) Say to yourself, "it's the OCD, not me." 2) Understand that these thoughts/compulsions/obsessions are caused by a problem in the brain, 3) Distract yourself from doing the behavior by getting involved in other activities or using a time limit - i.e. "I won't do this for 15 minutes." 4) Remind yourself that you aren't bad or weird -- it's just a brain thought cause by a malfunction. Don't make it more important that it is.

I think I was able to successfully teach the concepts to my son who has found them to be helpful in dealing with both OCD and anorexia. He was in recovery as we introduced these concepts and the OCD tendencies were increasing. They have steadily decreased since then, but that could also be attributed to his increased weight and mental function.

This is probably not a first-read or must-read book for parents of children with anorexia. Instead it could be viewed as a later-read depending upon your individual family needs and dealings with OCD.

I purchased this book on Amazon for about $10.

Living On Air

http://video.google.com/videoplay?docid=-7054088385304360926&hl=en

Thanks to "hopeful" from my parent support group at http://aroundthedinnertable.org/, who pointed me towards this video. Apparently it was aired clear back in 1999. Yet, at that time, most practitioners scoffed at any neurological or biological connections to anorexia. We've come a long way since then, but most of the information in this video has been supported by current research. The program also has video feed of the Minnesota Starvation Study, which is very interesting.

Spotting The Tiger

http://www.kartinifoundation.org/spotting_the_tiger.asp
http://www.kartiniclinic.com/AV

This DVD narrated by Jamie Lee Curtis is a wonderful tool to help pediatricians, teachers and parents recognize anorexia. It was created as part of a project to help educate pediatricians (who are typically the first professionals to engage the illness - yet often miss the symptoms) recognize what they are dealing with. The series is also helpful to educate extended family members or friends who are trying to understand what is happening to your child. Our pediatrician did not recognize our son's anorexia for the serious disease that it was. He could have benefited from this DVD. I wish we could distribute this to all of the local pediatricians and educators in our area (and then get them to actually watch it).

F.E.A.S.T

Families Empowered and Supporting Treatment of Eating Disorders
http://feast-ed.org/

This is the synopsis from the website: "FEAST is a nonprofit organization of and for parents and caregivers to help loved ones recover from eating disorders by providing information and mutual support, promoting evidence-based treatment, and advocating for research and education to reduce the suffering associated with eating disorders."

This is a new organization supporting the families of children with eating disorders. I am already a member. There is a wealth of information and support available on the site. They have links which include services, research, insurance, treatment resources, and a support forum for parents and other caregivers. They are poised to be huge advocates for change in both political and media arenas.

In some ways, the FEAST website is a lot like I hope to see this site - a compilation of the best information and support out there.

Help Your Teenager Beat An Eating Disorder

(James Lock, MD, Ph.D, Daniel Le Grange, Ph.D)

I finally finished reading this book last week. Really, it should have been the first book that I read when my son got sick a year ago. In fact, I think all pediatricians and therapists should have a stack on hand that they issue as "required reading" to all parents of newly diagnosed anorexia patients. It would be even better if it could drop into the lap of any parents suspecting their child to have an eating disorder.

The book outlines a step-by-step education process, starting with learning about the disease, understanding your child, finding appropriate treatment and ends with helping parents to be involved in all methods and processes. It took me months to cull together all this same information without the help of the book. If only I had known how thorough this book was, I could have saved myself a lot of time and energy.

I like that the researchers are pro-parent. I also like that they give a broad overview of all the research right at the beginning of the book. Lock and Le Grange like family-based-therapy and take the time to show you why the research backs up this treatment method, but they also show you the other points of view as well. I didn't feel like they were heavy-handed at all, but rather gave you all the information and let you decide for yourself. Lock and Le Grange also acknowledge that ideal treatment is not available for all patients, so they discuss the challenges and situations that many face and give suggestions for working with what is available.

For parents who have been in the trenches, fighting either anorexia or bulimia, this is a good refresher and reminder of some best practices. For the parent of the newly diagnosed child, this book is essential reading.

I paid about $12 for this book through Amazon.

Eating With Your Anorexic (Website)

http://www.eatingwithyouranorexic.com/

I knew that Laura Collins had a website connected to her book, but today is the first time I really explored her site. Eating With Your Anorexic is much more than an advertisement for her book. I really feel like her website is a pretty thorough compilation of the information that I'm trying to include here on this blog. I should have explored this site more when I was first looking for information.

Here are some highlights:
*FAQ on Recovery - (This page, in my opinion, is the best place to start on this website.) She covers so many parent questions including "How do I start?" "How do you determine a healthy weight?" "What about drugs?" and "This is a girl thing, isn't it?"
*Family Based Treatment Finder - For US, Australia and Canada.
*Positive, Helpful, Book Recommendations - Laura recommends five different books.
*Maudlsey Approach - An overview including research, new articles and recommendations.

"Now What?"

http://www.maudsleyparents.org/images/printerfriendly_recipes.pdf

This is a wonderful seven page pdf file full of high-calorie recipes and refeeding tips.

"To cut down on stomachaches, as well as on the anxiety and fear of eating, many families try to fit their child's calorie requirements into the smallest possible footprint." ("Now What?" Maudsley Parents)

Treatment Manual for Anorexia Nervosa: A Family-Based Approach

(James Lock, Daniel le Grange, W. Stewart Agras, Christopher Dare, and W. Agras)

This book is a treatment manual intended for therapists, not parents or sufferers. I read the book as a parent with no background in therapy, with the exception of seeing a therapist with my son who has anorexia. It's probably important to note this disclaimer before my review.

This treatment manual was written in 2000 with a paperback version released in 2002. The book, at it's core, uses methods introduced by the Maudlsey Hospital in the UK. At the time of the book's release, these ideas were pretty radical and differed from the approach and thinking of the majority of doctors and therapists. At the time, most parents were blamed and/or discouraged from participating in helping their child. Typical therapies tried to convince the anorexic patients to eat. The idea of this manual, that you involve the parents and help them to restore nutrition first and then address any psychological needs, was and still is a controversial idea. However, in the past few years, studies have shown a much higher rate of recovery with this approach than with traditional approaches.1

The book claims an "agnostic" point of view as to cause of eating disorders. However, I found some small indicators that suggested the authors were not completely without bias. Also, this book is now 8 years old. In a field where new research is being released regularly, this book probably needs an update. Even Maudsley and Locke's continued research has shown some changes that should be incorporated into the manual.

The book explains therapy for three stages of treatment for anorexia. After an introduction and a review of research, phase I is introduced and explained. A separate chapter documents an actual therapist, patient and family moving through the phase. Separate explanatory paragraphs are used throughout the chapter to reinforce the difference concepts contained in the phase. This same pattern is used for phases II and III. The book's concluding chapter describes a patient's treatment through all three stages.

This therapeutic manual emphasizes the need for family involvement. They, in fact, recommend that entire family be involved in each session (I'm not so sure this would have been practical for my toddler). Parents are encouraged and supported in refeeding their child. A move toward independent eating is encouraged in phase II. Phase III is used to discuss and explore moving beyond the anorexia into normal living and adolescence roles.

This book is probably a good starting point for therapists not familiar with family-based treatment or the Maudsley method. Additional reading would probably be necessary to bring the therapist completely up-to-date. I've heard that many parents, upon learning about the Maudsley method, will give this book to their therapists. This book is also a valuable resource for parents. It was helpful to see a starting-point, of sorts, for these new methods that are working so well with my son. With all the recommendations, I was expecting a perfect book. It's not perfect, but we've sure come a long way in the last eight years.

1- Evolving Treatments for Adolescents with Anorexia Nervosa: The Role of Families in Recovery By James Lock, M.D., Ph.D.

I bought this book on Amazon. I tried to find a second-hand copy for a better price, but could only find it for the same or more. I was able to buy a digital copy ($5.80) through Amazon. I had a lot of the book read, before the physical book arrived at my door.