1. Can you give us some background on your family and let us know when you first realized there was a problem?
We are a fairly ordinary, middle class, California "beach" family of four. My wife and I both work outside the home. Despite my wife’s busy schedule, she was able to make time for my daughter’s extracurricular life, including serving as Girl Scout leader for several years. We are a close family, spending much of our free time together hiking or going to the beach.
My wife and I had our share of marital difficulties but overall our problems seemed to be much less then our peers in the community. Immediately prior to my daughter’s illness, we had recovered from a particularly stressful time in our marriage. In addition, my wife had new job responsibilities that put her in another city 3 days a week. No doubt, it could have been a contributing condition that allowed the ED to appear.
Our daughter was 12 and in the 7th grade when I noticed that she was not eating a normal lunch. Since we were very informal about meals in general, it was difficult to detect if she was restricting food. I first noticed that she had dropped 10-12 pounds after Christmas when she was getting a check up for a bad ear infection. Several weeks later at the follow up visit she had lost another few pounds. It was only normal weight fluctuation, I assured myself.
Odd behaviors began to emerge. She became secretive and kept journals of calories consumed. She became much more emotional and difficult. Suddenly she became very obsessive about every minute calorie ingested. My wife thought the behavior normal adolescence but I began to fear that there could be a problem. At a routine medical visit for a shot, I asked the doctor privately if he felt there could be a problem. He noticed that she had dropped nearly 30 lbs or over ¼ of her body weight in six weeks! I immediately thought cancer and was "relieved" that it was "only" an eating disorder. At the time I thought simply a "mental condition" that could be easily cured with "common sense" and talk therapy. Little did I know the seriousness of the disorder.
2. How did you decide on treatment/find your Maudsley provider? Aside from Maudsley did you employ other interventions?
Our pediatrician is a fine doctor but had little experience with eating disorders. He admitted that since our daughter was still on the BMI "normal" scale, he would have assumed that she was simply going through a "skinny" phase until I presented the entire behavior profile. He referred me to a colleague, Dr. Barbara Lucas, who happened to be the staff physician for an eating disorder center and saw patients outside her normal schedule at the center.
Dr Lucas confirmed that my daughter most likely had anorexia and was a prime candidate for admission to a residential treatment facility. My wife and I were shocked that our daughter had anorexia. After all, isn’t anorexia a disease of poor little rich girls with overbearing, diet obsessed mothers? That was definitely not our family.
I immediately surfed the Internet, went to libraries and bookstores trying to find out about this strange disease. Fortunately for us, Laura Collins’ book "Eating with your Anorexic" had just been released. I sat on the carpeted floor of Barnes and Noble bookstore and powered through the book.
My wife had done her own research and come up with different conclusions. She thought that more "conventional" approaches with talk therapy should be tried first. She felt that the Maudsley method and its practitioners were too strident. It was absolutely unheard of in our family to "force" our children to eat.
I searched for Maudsley support in the Los Angeles area without luck. I printed out some of the meatier, scientific studies to discuss with Dr. Lucas. Though she was never a "Maudsley" professional, she was generally sympathetic. She had seen many patients try to get better outside a formal eating disorder program, but frankly few were successful. Since, my daughter’s weight was just above "needs immediate" residential treatment, Dr. Lucas agreed to work with us on a weekly basis and we agreed to admit our daughter if medically necessary. We also had the assistance of a dietician and a psychologist from the same eating disorder center. The dietician was great but the psychologist was of the old school- "analysis" before normal healthy eating is restored. We fired our psychologist and got another almost "blissfully untarnished" psychologist who specialized in family and adolescents and had little experience with eating disorders. She did have a huge measure of commonsense and did not taint her sessions with out dated, unproven theories of eating disorders. Instead, she focused on communication and family dynamics. The best thing is that she provided my daughter an outlet for her feelings.
3. How did you get accomplish re-feeding?
My wife was a Maudsley skeptic who was suspicious of "force feeding" which she felt could cause even more psychic trauma and make the problem worse. I was a whole hearted Maudsley convert wanting a speedy fix. I advocated 4000-5000 calories. My wife wanted a slow, gradual approach. Since one of the major tenets of successful refeeding, is that both parents must act in unison, I surrendered my position to one that both of us could endorse. Thus we gradually, increased calories by several hundred per week instead of massive calorie assault. Our first goal was to stop the further decline of her health and stabilize her weight. The next goal was to gradually increase calories until "normal" weight could be reestablished. We pushed our daughter daily to an "uncomfortable" amount of food daily but only gradually. With Gandhi like persistence, we encouraged our daughter eat a bit more each day.
I think of the refeeding process like an athletic training for a sporting event. The correct amount of stress, strengthens and builds muscle. Too much training results in injury, breakdown and exhaustion.
We focused on calorie dense foods. She was allowed to control small allotments of food of her choosing provided she had her "health shake" ( a super premium ice cream shake and protein powder 700-1200 calories) daily. My daughter was allowed the illusion of control and choice within the context of a closely monitored diet.
A "victory" day was any day that she consumed more calories than she expended. We restricted physical activities initially and also removed all full length mirrors which she would obsess about her figure endlessly.
Gradually, she returned to "normal" adolescence.
4. How did you talk to your child about anorexia, eating, recovery, and other related issues while you were refeeding? Do you have any coaching tips on handling your child’s anxiety?
I tried to talk with my daughter as an adult, speaking frankly about the causes and theories but she did not want to listen. Dr. Lucas, spoke clinically of the health consequences of starvation and the seriousness of the illness. It scared her and helped her focus positively on getting better. Though she is healthy now, the anorexia still scares her and she is very uncomfortable dealing with it. In her most anxious moments we tried to speak calmly and softly with empathy for her pain and fear. We would try to redirect her thoughts to positive images or distract her with games or other activities.
5. What practical problems arose and how did you handle them? School, jobs, etc.
We had no major practical difficulties, except that we immediately removed my daughter from all sports and gym class. The doctor mandated daily snacks and lunches be consumed in front of the school nurse, a kindly matron who welcomed her daily visit from my daughter. I informed her teachers about my daughter’s illness and they were generally supportive.
6. How did parents work together to see Maudsley succeed?
We didn’t initially work together until a common ground was agreed to. I was frustrated by my wife’s lack of enthusiasm for Maudsley. Ultimately, our "slow" refeeding worked very well because it was truly a common front against the disease. I think it is essential to have agreement between the spouses.
7.What was the greatest challenge for you? For your child?
The greatest challenge for me was to work in concert with my wife that held different beliefs about refeeding. My daughter’s greatest challenge was enduring the many months of being "the freak". It challenged her mentally and physically.
8. How did you go about re-establishing independent eating? How are things going now?
We strove to "normalize" eating as much as possible early into refeeding. We did not want to reinforce a "sickly" mindset and pretended to ignore it while making certain that daily calories goals were met.
My daughter's eating habits have resumed to "normal" teenage diet. It is not unusual to have a pancake breakfast or to indulge in other formerly "forbidden" foods.
9. What advice would you give to families starting out?
Never give in. Physical recovery can take months, mental recovery can take a year. Stay strong and persist. Seek out others on the same journey and gather strength from their experience. Remember, in nature, every system seeks to regain balance and thrive. Anorexia is a brutal insult to physical health. It will take months before the delicate balance is restored. Never forget that most anorexics recover. Have faith. Soon you will be able to tell your own tale of recovery.