Back in 2002, after two years of trying desperately to get my daughter's eating disorder diagnosed we finally had the EDNOS diagnosis. I was relieved and thought we'd find quick effective treatment and she'd be healthy in a matter of months...this is one of those "I wish I'd known then what I know now" moments.
We tried a number of things and in 2003 I read about a research study at the University of Chicago using this newer treatment called, Maudsley Family Based Therapy (FBT) for bulimia (BN) which was mainly what we were facing, even though the diagnosis was EDNOS (that is another whole blog post). I called Dr. Daniel Le Grange at U of C and talked with him. It was a tough decision to make...pulling her out of school for 6 weeks, finding a hotel in Chicago to live in for 6-8 weeks and she was making progress (at that moment) in the treatment program she was in. So, sadly we did not do it. To this day I deeply regret this decision.
You see with the traditional "parentectomy" model that we were experiencing we were pretty much out of the loop on her care and had no instruction on how to help her at home. I often said this made little sense as she was with the therapist for one 50 minute therapy hour a week and with her dietician for another hour and with us the rest of the time.
I believe that as a direct result of this parentectomy model we are no longer (for the present moment) a part of our daughter's life. I can't know for sure but we do know that because we only got limited family therapy to sort things out the rest of the time the eating disorder and it's distorted thinking was telling these distorted thoughts to her therapists....You can guess what they thought of us. And some of these distortions got reinforced and her distrust of us grew deeper. We still hold out hope that as her brain matures and is re-nourished she will forgive us for not being able to save her from this beast and will want to have us in her life again.
I don't wish this path on anyone. And that being said, there is no one size fits all for treatment. So this is my short summary to you about what FBT is, how it works and what the outcomes are looking like now in 2013.
In 2008 the Journal of Clinical Child & Adolescent Psychology published a paper that said, "At this time, the evidence base is strongest for the Maudsley model of family therapy for anorexia nervosa."
What does this mean? Well, the data are showing 60-90% full recovery rates after 4-5 years compared to other treatments such as inpatient recovery rates that are between 33%-55%. This information obviously wasn't available to me when I was trying to decide back in 2003. It's a conscious effort to not play the 'what-if' game.
What I have also learned via conferences, reading books, papers, websites, journals and talking with experts in the field is that this 3 phase treatment approach sees the parents or partners of the ill person as the best ally for recovery! What a switch from being pushed aside and told we were part of the problem! I live in Minnesota (the land of 10,000 treatment centers) and can see the chemical dependency world has realized this for at least 30 years with people in recovery and their families.
HOW IT WORKS
- Treatment has three phases led by a family-based therapist and involves the entire family.
- The parents/partner are guided to help the patient eat (and/or stop purging and over-exercising) and siblings are encouraged to ally with their ill sibling.
- The treatment for bulimia varies in that: the patients are more involved with the problem-solving phase of recovery.
- Patients are neither expected to nor asked to cooperate. In the first session a meal is eaten in the therapist's office and the ill person is asked to resist eating to demonstrate the difficulties and dynamics of the family around the meal.
- No one is blamed in Maudsley FBT - the illness is not seen as anyone's fault and looking for a cause is not a part of the treatment.
WHAT FBT IS
In Maudsley FBT the emphasis is on nutrition and behaviors rather than on insight and motivation. This makes so much sense to me given that my daughter's brain was malnourished even though her weight was in the "normal" range. It's so encouraging that one does not need to "want to get well" as so many people are commonly told.
This model takes the most committed and competent people in the patient's life and sees them as the best qualified to find ways to fight the illness, regain healthy weight and end unhealthy behaviors.
These carers (as they are called in the UK and Australia) or caregivers (as they are called in the USA) are taught how to remain calm in the face of the eating disorder's outbursts and defiance and remain steadfast in gently encouraging the loved one to re-nourish his/her brain and body.
The three phases of treatment are:
- Parents take responsibility for decisions of what, when, and how much the ill patient eats as well as behaviors around food. (Except in BN where the sufferer collaborates on this)
- After weight restoration is nearly achieved, control is carefully given back to the patient.
- Finally, the therapist and family work to restore normal and age-appropriate lifestyle and relations between family members.
James Lock and Daniel Le Grange helped to develop FBT. In a book that these researchers have edited, Eating Disorders in Children and Adolescents, they have written respectively, chapters on “FBT for Anorexia Nervosa” and “FBT for Bulimia Nervosa”.
Dr. Lock writes, “There are five fundamental tenets that guide all phases and interventions used in FBT:
- an agnostic view about the cause of AN
- initial symptom focus
- non-authoritarian consultative stance as a therapist
- an emphasis on parental symptom management (empowerment)
- an ability to separate the disorder of AN from the adolescent (externalization)”
In Dr. Le Grange’s chapter, four of the five key tenets for FBT-BN are similar to FBT-AN. One difference in FBT-BN is that instead of “parental symptom management” it is “parents and the adolescent are responsible for normalizing eating (collaboration).” Dr. Le Grange writes that: “It is unique to FBT-BN that the adolescent is an active participant in the attempts to curtail binge eating and purging, and the therapist encourages the adolescent to express his or her point of view and experience in lieu of arriving at a solution to the eating disorder symptoms.”
You can read more about the origins, outcomes, research and details of the FBT/Maudsley Family Based Therapy Approach on many sites including these two:
A few Books:
- "Help Your Teenager Beat an Eating Disorder" Lock and LeGrange
- "Off the C.U.F.F." by a clinician who leads parent training classes
- "My Kid is Back" - June Alexander's stories of 10 families who used the Maudsley model
- "Just Tell Her To Stop: Family Stories of Eating Disorders" A variety of treatment stories
- "Eating With Your Anorexic" - Memoir of FBT by Laura Collins
I would love to hear your thoughts.
Founder, Hope Network, LLC