How to Put Together, and Work With,
a Non-Maudsley Team printable view
Harriet Brown
Ideally, you’ll be working with a Maudsley therapist during your re-feeding process. Together you’ll go through the three stages of Maudsley treatment: help restore your child’s weight to normal levels expected given his/her age and height; hand control over eating back to your teen; and encourage normal adolescent development.
But what if, like most families, you don’t have access to true Maudsley professionals? What if there aren’t any in your town, or county, or state? Does that mean you can’t use the Maudsley approach?
Not at all. Many families successfully re-feed their child at home without the support of an official Maudsley therapist. I found that there are three key elements involved:
• put together a team of professionals (pediatrician, therapist,
psychiatrist, nutritionist) who are supportive of the approach,
or at least open to it;
• understand that you will be the linchpin; you’re the one driving
the bus, with help from the rest of the team; and
• make sure that everyone involved is consistently and persistently
delivering the same messages—that you’re all on the same page.
Use your judgment and instinct in putting together your team; if someone doesn’t feel right, s/he probably isn’t. Start by identifying one medical professional as a kind of unofficial primary caregiver, someone who can and is willing to work closely with all of you; this role can be filled by anyone on the team. For us, it was our pediatrician, Dr. N., who had heard of the Maudsley approach but didn’t know much about it. She was willing to learn more and to support us in using Maudsley, though, and that’s what made the difference.
We arranged for Kitty (our daughter’s nickname) to see Dr. N. every week, where she was weighed in a gown, after going to the bathroom, standing backward on the scale so she didn’t see her weight. Dr. N. generously spent an hour or more with us. To Kitty, she reinforced our primary message—that food was medicine and Kitty had to eat. Kitty trusted Dr. N., and hearing the same words and ideas from her as she heard from us seemed to help her eat. It certainly helped us feel more confident as we went along that we were continuing to do the right thing.
I often called Dr. N. ahead of time, explaining that I thought Kitty needed more calories or more fat, etc. Then Dr. N. would "prescribe" a daily milkshake or whatever in our weekly appointment. She played the heavy (so to speak), giving the stamp of medical credibility to the process we were undergoing, and reassuring Kitty that we were all working together to help her get healthy and strong. She listened to our concerns, both with Kitty in the room and separately, and spent many hours supporting and encouraging my husband and me.
Dr. N. also set Kitty’s target weight, basing it on Kitty’s height and weight from infancy, plotting her growth curve and showing us where Kitty needed to be. This meant that we didn’t have to guess based on BMI charts or other imprecise measures; all of us could feel confident that the target we were aiming for was appropriate.
The second member of our team was the therapist, Ms. S., who had heard about Maudsley but was not trained as a Maudsley therapist. She, too, was very open to working with us. Kitty saw Ms. S. every week, with one of us in the sessions (at her request). Ms. S., too, reinforced the fact that food was medicine and that Kitty had to eat in order to get well. Early on, she offered mostly support and encouragement; as she told Kitty, "When you’re at a very low weight, your brain doesn’t work right." Though the sessions were for Kitty, we found them soothing and helpful as well.
Ms. S. ran an eating group, and for about six weeks, Kitty ate with the group every week. At first she enjoyed the group and told us that the other girls understood what she was going through much better than we did. After a while, though, she started coming home from the group upset, refusing to eat because other girls in the group were thinner than her. We pulled her out of the group and continued seeing Ms. S. each week or two.
As Kitty’s weight went up, Ms. S. began to raise some of the psychological issues she saw Kitty struggling with. The closer Kitty got to weight restoration, the more able she was to discuss some of these issues. She continued to see Ms. S. on and off for some months after weight restoration.
The third member of our team was the psychiatrist. In retrospect, I wish we’d seen her only once or twice. The psychiatrist offered a variety of anti-depressants, none of which helped Kitty much, though she did take one for about six months to help her sleep at night. A number of other medications prescribed by the psychiatrist had negative effects, causing hallucinations, paranoia, anxiety, etc. Studies have shown that anti-depressants are not effective in anorexics, and I wish we’d avoided them. We also unwittingly used up most of our state’s limited mental health benefit on the psychiatrist, who charged more than the therapist and was less helpful. Still, she added one more voice to the group, reinforcing to Kitty that she had to eat and that we would not let her starve.
Kitty also saw a nutritionist a couple of times. Some families rely on the nutritionist to be the medical authority on foods; this wasn’t our experience, but it can be quite helpful with the right mix of personalities.
One of the challenges of working with any group of professionals, Maudsley or not, is make sure that everyone stays on the same page. Anorexia in particular is a disease that twists and distorts what the sufferer hears and experiences. Words have an especially strong affect on anorexics, and can be powerful motivators in either direction. For instance, when Kitty was about 10 pounds shy of her target weight, Dr. N. said one afternoon, "You’re doing just great!" Kitty (and, more important, the anorexia) heard this as "You’re done, you don’t have to gain any more weight!" I had to step out of the room with Dr. N. and ask her to clarify specifically to Kitty that she had to keep gaining; she wasn’t ready to maintain yet.
As the linchpin of your child’s treatment team, it will be your job to know what’s being said to your child by every professional. I strongly recommend that you accompany your child into each appointment or session. If you hear something that raises a red flag, trust your judgment; ask the professional to step outside with you and discuss it further.