1. Can you give us some background on your family and let us know when you first realized there was a problem?
Family background: Mother, father married, son now 20 and daughter (with anorexia) 17 now and was 16 when it all began. Live in the suburbs of a larger Michigan city.
We first realized there was a problem in June of 2005; however, we think it began about a month prior to our realizing it. In late May, our daughter had many things change in her life.
She decided she didn’t like the soccer coach and wouldn’t be pursuing soccer as she had lovingly for the previous 10 years or so.
She got a part-time job and continued with school.
Her brother graduated HS and would be leaving home soon.
Diabetic (obese) grandmother came to visit for 2 weeks and got very ill so stayed a month. She had daughter sneak her sweet, sugary snacks all the time. Grandmother requested her help to get into the bathtub as well.
Became very ill with an upper respiratory infection that spread to her grandmother (hence the month-long visit, which included a hospital stay).
Did a runway modeling competition (she committed to without our consent) to help an art student friend win a scholarship to an Aveda cosmetology school. She came in second place, thus helping her friend win $5000.
Her new boyfriend told her he was a recovered bulimic. She did not know (his family later told us) that their food bill for a family of 4 was $1500 per month, they locked their food up, putting out only enough for breakfast each day. He since has gone through inpatient and outpatient treatment centers. They stopped dating in June of that summer.
All in one weekend (the weekend of her brother's open house and graduation), the infection, the modeling competition, the grandma visit and the boyfriend intensity happened.
Later the next month (June of '05) she mentioned she was restricting and that her boyfriend was a "recovered" bulimic (we now know he hadn’t gotten treatment at that time). We had noticed weight loss in our d and asked her to get on the scale. At 5'3" and an 8# weight loss in 2 months, we began to be very concerned and watched her for another couple of weeks until we settled on initial treatment confirming the problem and searching out what we thought was good treatment.
2. How did you decide on treatment/find your Maudsley provider? Aside from Maudsley did you employ other interventions?
Other interventions included initially going to psych hospital that locally treated eating disorders (Forestview). There, she was evaluated for her medical risk and suicidal tendencies and released to us with local names for possible traditional psychologists. We interviewed 2 of them who were highly recommended and let our daughter assist in the choice of provider. Meanwhile she whittled away at eliminating whole food groups and fats. She would eventually settle on crackers mostly.
Treatment began with a parentectomy and periodic family therapy sessions. We also attended a support group as a family. In one of our family-only sessions, our mental health provider said in front of our daughter, "Well, you know the average treatment time for anorexia is 7.2 years with a revolving door of inpatient and outpatient treatment centers." She also said we could only ask our daughter once a day if she was "being good to herself" that day - that in light of the fact that she was probably eating 700 calories a day, purging that, and I was tripping over her in her room in the middle of the night doing sit ups. We weren’t allowed to make sure she was eating and weren’t allowed to ask about or prevent her from purging or exercising.
During a support group session, another parent of an adult child mentioned they were having great success with recovery from a book called Help Your Teenager Beat an Eating Disorder. Armed with that and Laura Collins’ book, Eating With YourAnorexic, we knew we had to try. We really had NOTHING to lose except lots of money for someone else to pretend to care about our daughter's recovery.
I contacted University of Chicago Psych Dept as referenced and sought initial info on treatment and referral for other potential therapists in Michigan. Michigan didn’t pan out and felt that the study being offered at University of Chicago under Dr. Daniel Le Grange would be a win-win situation no matter which group we were randomized into. For a year we traveled first weekly and spaced out farther thereafter 3 hours one way to get care that we were comfortable with and wouldn’t allow our daughter to starve herself to death.
3. How did you get accomplish re-feeding?
While randomized into individual therapy in the University of Chicago study, we were not discouraged from caring about the starving of our daughter. Armed with book information of the successes of others and knowing our daughter was new to this realm (few other influences from entrenchment of anorexia lifestyle and friendships), we were encouraged to take it on, even though the individual therapy was not "Maudsley."
My husband and I knew, number 1, we had to be on the same page 24/7 against this disease and not against our very ill child. We researched and got food in the house to begin refeeding on a weekend in September. We began on a Saturday morning. We told our daughter these things:
We loved her and that we were in this together to see her get better.
Nothing comes before full nutrition-school, work, friends, activities, etc.
She would see a local physician for nutritional IV therapy until weight-restored and take nutrients.
Food had to be finished before getting up from the table.
No playing with food.
No sleeping at the table.
No closing of bedroom or bathroom doors.
These were relaxed only after we were comfortable with her steady gain, cooperativeness, and speed in finishing meals. Her motivation after about a week of in-home feeding was to be able to go back to her favorite class at school. School was very helpful, assigning a liaison to assist her in getting assignments to her and minor tutoring in upcoming tests. Eventually one of us parents met with her for lunch in student services’ empty advisor offices. It took months for her malnutrition to reverse and her mind to come back.
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?
Our daughter didn’t want to talk about it with us for quite a while. We enjoyed her verbal successes when she shared them, like, "I'm dreaming again!!!" or "I've had 3 meals out with friends and I could cry!!!" We did mention the effects of malnutrition on the body to her. We did mention when we thought our daughter was pulling us into an eating disorder argument - one that often had no good reason to argue or it was quickly going nowhere because it was so illogical. We would restate what needed to be done and that we loved her. We didn’t talk about it too much because we wanted her to live her LIFE without the anxiety of what to eat when for a while. It has worked.
We reminded her often that her food was her medicine and that we weren’t going anywhere. We were in this together and that we loved her.
5. What practical problems arose and how did you handle them? School, jobs, etc.
Generally, they were handled and our daughter was clued in as to how they would go at first. Things were in place with work and school to allow us to proceed with how we wanted to have it go. I was prepared to quit my job to give it a shot. We were faced with possibly hundreds of thousands of dollars in treatment and inpatient therapy, not including travel! It was a no-brainer to try it this way. Eventually we ate at school with her and I would meet her after school to monitor bathroom, etc., for a while. It improved from there as she was able to socialize and gain.
6. How did parents work together to see Maudsley succeed?
We always, always, always had to be on the same page because the ED would work to divide us ALL at the first opportunity. Even if in disagreement parentally, we would try discuss and decide while daughter was in bed.
7. What was the greatest challenge for you? For your child?
Definitely the greatest challenge was handing over refeeding back to our daughter. Definitely the greatest challenge for our daughter was to want to recover and take it on.
8. How did you go about re-establishing independent eating? How are things now?
We never discouraged eating/snacking dates with friends. Once that seemed to be going well, we had her make her lunches 3 days a week, and finally she is now also choosing to eat at school on her own 2 days a week. We weigh in one time weekly and meet briefly about it and any successes or worries. She knows that if she needs to or if she loses too much weight, then therapy is the next step again. She would rather not - at this point, thankfully. Once she realized after the study was over that there was still a safety net and that we weren’t abandoning her, she has maintained and continues to move forward.
9. What advice would you give to families starting out?
Don't react to the ED, stay on the same page at all times, go for full nutrition with a variety of foods from day one without backing down at all, and do it all with love, love, love. Allow your child to see how far you will go for them. Believe it or not, it is taking the anxiety AWAY in the big picture even if your child reacts in an opposite way. Do it SOONER than later. There isn’t as much time as you think when you look at the statistics with this disease. Think of it as the most aggressive cancer there is, and don’t let fear PARALYZE you. Anorexia doesn’t kill our children, starvation does. THERE IS HOPE!