Family #1
Susan answers:
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 traditional family of four with 2 daughters almost 6 years apart. Our oldest daughter was 14 years old and just starting 8th grade in 2004 when I noticed some restricting, mostly decreasing portion size. When she decided to become a vegetarian at the end of the first month of school, the weight loss became much more noticeable. With hindsight, I see that the restricting actually started earlier with "healthier eating habits": the elimination of soda, french fries, and other "junk" foods. Some of the other common signs we saw were a preoccupation with cookbooks and recipes and an interest in elaborate meal preparation.
2. How did you decide on treatment/find your Maudsley provider? Aside from Maudsley did you employ other interventions?
We found our Maudsley treatment provider through my sister who did her research on the Internet and found that Dr. James Lock was near us at Stanford. Unfortunately, prior to our finding Dr. Lock we wasted 6 to 9 months getting to a doctor, then went the all too common route associated with conventional treatment of outpatient treatment, followed by more weight loss and hospitalization. Throughout, we were engaged in a desperate search for the mental health provider who was going to connect with my daughter and find out why she was starving herself. Until we found Maudsley, we were advised simply to provide our daughter with an appropriate amount of food measured by servings or exchanges without any discussion with her about whether she should be eating the food and why. In fact, at one point we were asked to enter into a contract with our daughter to serve food only and not say anything about the food and eating at all.
3. How did you get accomplish re-feeding?
When we started Maudsley, our daughter was finishing up her school year. The start of summer vacation made it much easier to put our lives on hold while we concentrated on feeding our daughter. We stopped all activity, including socializing with friends and family. My husband took a 6-week leave from work to be home full-time. We did nothing else except feed our daughter, go to medical appointments, and care for our younger daughter. My sister continued to support us by sending us relevant postings from the Eating With Your Anorexic website. We read and reread Lock and Le Grange’s Help Your Teenager Beat and Eating Disorder and Laura Collins’ book, Eating With Your Anorexic. Luckily for us, our daughter gained weight very rapidly once she was receiving enough nutrition, about 3500 calories/day. In a month, she gained 12 to 14 pounds and her menses returned. We aimed for 800 calories per meal and 400 calories each for the morning and afternoon snacks. For a while we were able to give our daughter a premium ice cream milk shake for the evening snack which totaled over 600 calories. When she asked for something different, we went to a peanut butter sandwich that packed over 500 calories. For us, having the substantial evening snack was the key to significant and regular weight gain. It was our insurance for any miscalculations that might have occurred during the day. The psychological recovery took much longer. It was not until school started in the fall that we felt our daughter was self-motivated and able to recover mentally.
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?
We did not really talk to our daughter about anorexia, eating, or treatment at all. For the first few months of refeeding, she was unable to talk about the anorexia or even acknowledge it. During this time, she was so anxious and depressed, it frightened us. When she was not depressed, she was so angry that she acted out both verbally and physically. Holes were punched through walls and doors. Furniture was destroyed and dishes broken. She struck me physically and told me over and over she hated me even though she had never uttered those words ever before. At the risk of provoking her, we made sure we told our daughter at least once every day how much we loved her and how we knew things would get better even though we did not always believe that. Distraction worked best for us, especially during meals. We took advantage of my sister’s willingness to help by having her to dinner almost every night over the summer and for most weekend meals. She was able to keep the conversation going by talking about anything and everything. We, the parents, were often too exhausted and demoralized to keep the banter up. Our younger daughter also joined her sister in playing endless hours of video games. The challenge in reaching the next level and beating the game was a huge distraction during those long hours at home. The younger sister’s genuine admiration for her older sister’s skills was a constant boost. While playing video games, even though she might not interact with us, our daughter was able to interact with her younger sister in a "normal" manner.
Two thirds of the way through the summer, my daughter asked for a new pet cat. Our cat of 22 years died shortly before we noticed our daughter’s initial weight loss. We went to the shelter and each daughter picked out a kitten to bring home. Interestingly, our older daughter picked a slightly older kitten who was recovering from a serious injury. Still shaven, she looked battered and fragile. Both kittens thrived at our house, and luckily each kitten bonded closely with the daughter who claimed it as her own.
5. What practical problems arose and how did you handle them? School, jobs, etc.
Since most of our refeeding occurred during the summer, school was not much of a problem at that point. Prior to Maudsley, our daughter was in and out of school for much of the second half of her school year due to multiple appointments and just "bad" days.
My husband being able to take time from work was also key to our success. Although we did not always succeed at "being on the same page", having practical help and support with grocery shopping, meal preparation, and meal supervision was invaluable. My husband being available also allowed us to give some time to our younger 9 year old daughter. Our younger daughter needed lots of reassurance, the effectiveness of which wore off as the weeks wore on. Luckily, we also had my sister’s help, so our younger daughter was able to spend time at her home when things got particularly rough.
6. How did parents work together to see Maudsley succeed?
We were probably most successful when my husband prepared the meals, and I supervised the eating. I was more successful than my husband with being able to see that the agony associated with refeeding was better than the torture of seeing our daughter controlled by the anorexia. He was better able to engage our daughter in near "normal" interaction when he did not supervise the eating. When supervision fell to him, our daughter was not able to "relax" with him either.
7. What was the greatest challenge for you? For your child?
It is very difficult to name the greatest challenge because there were so many that seemed unbearable at the time:
Unlike some other parents, we were not able to speak openly to our daughter about what she was experiencing and how we were trying to help her. When we expressed how sad we felt with being cut off from our daughter in this way, our Maudsley therapist and doctor pointed out that the important thing was our daughter was eating and gaining weight -- that this meant she heard us on some level and was responding in the way that truly mattered. The endless pressure of planning, preparing, and supervising the meals day after day was relentless. There were times when I thought the task was too great. At those times, I kept reminding myself that my task was nothing compared to that of my daughter. At least I understood why we were doing what we were doing. How could my daughter understand why she was suffering under anorexia and why we seemed to be adding to her suffering? The despair that overtook us sometimes almost defeated us. There were so many times when we thought our daughter was not going to improve psychologically, even with restored weight. As the months passed with limited improvement, we began to believe that we were among the twenty to thirty percent of families for whom Maudsley did not seem to work. We also wondered if perhaps other psychiatric conditions were at work and that medications were indicated. Dr. Lock encouraged us to give it more time because in his opinion what we were experiencing was not unexpected. We also told ourselves that we could not give up on our daughter. If she had not given up yet, then how could we? One of the most important things we did was to learn to separate our daughter from the anorexia. Once we were able to do that, it was much easier to empathize with her while fighting the disease with all we had.
It is difficult to say what was most difficult for our daughter. I know one of the most difficult things for her was feeling the loss of control over her life. While she might have seen that as the result of our actions and that of the treatment team, of course, she lost control as soon as anorexia took over. By helping her recover, we gave control back to her.
8. How did you go about re-establishing independent eating? How are things going now?
I mostly trusted my intuition. When my daughter indicated she wanted to try eating on her own (after at least a month of maintaining a healthy weight), we allowed her to choose her food first for a snack, then breakfast. We were always there to let her know if a choice needed to be supplemented. Oftentimes she asked if her choice was enough and was upset with me when I said no. Sometimes she gave the choice back. I found the therapist and nutritionist encouraged us to give back control before our daughter could handle it. Again, I trusted my intuition and did it at our own pace. We told ourselves if she was not ready for the responsibility, we would continue to keep her safe and try again when she was stronger. Ironically, our daughter turned the corner psychologically when we went against the strong opinion of our therapeutic team and gave her more independence when she started high school. Our team wanted us to supervise her lunches, but we felt she really wanted a fresh start with her new school. We held our breath and let her not only have unsupervised lunches, but the responsibility to buy her lunch off campus, as well. The desire to fit in with her new peers must have been very strong because she did fine and eventually gained full independence. We, of course, kept our eye on her meals and snacks at home and stepped in whenever necessary. Within a couple of months of the start of school, we discontinued the Maudsley therapy, and the time between medical visits stretched out to months at a time. It has now been almost a year and a half since our daughter reached a healthy weight, and she is still doing well. We no longer go to Stanford for any sort of follow-up. We remain vigilant, especially in times of stress.
9. What advice would you give to families starting out?
Using a Maudsley-based method to treat our anorexic daughter was the hardest thing I have ever done, but it saved my daughter’s life. We are so grateful that we had the opportunity to help her in her own home, surrounded by her family who loves her. Whatever you decide to do, separate the disease from your child. Your child needs all of your love and support and needs you to help fight the eating disorder. Remain as loving and supportive as you possibly can because your child deserves that from you. It could help save his or her life. Get support from your treatment team or get a new team or make do with what you have as long as your team members are not undermining your efforts. It will be difficult to be in charge of feeding your child and restricting his or her activities, but remember the alternative is to give that control back to an eating disorder that threatens your child’s life. Know that other parents have helped their children recover with the Maudsley method and you can too.
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