1. Can you give us some background on your family and let us know when you first realized there was a problem?
We've always had weight issues in our family. But, we tried so hard to make eating a "normal" thing. Looking back however, it was clearly more of an issue than we ever realized.
Gregory went on a trip to Tibet for six weeks...during the summer of 2004. While he was there, he lost about 30 pounds. When he arrived home, his stomach was not in great shape and eating anything rich caused issues. He also had picked up an intestinal parasite. As the weeks went along, he continued to lose weight and we noticed many odd behaviors. Honestly, our older daughter is the one who finally looked at us and said...you'd better do something. Gregory has an eating disorder. We knew it...but had been in denial for some time.
2. How did you decide on treatment/find your Maudsley provider? Aside from Maudsley did you employ other interventions?
Initially, we took Gregory to the pediatrician -- who was not particularly helpful. I don't think it is purposeful on their part...I just think that pediatricians are not educated enough about eating disorders. He wanted to see if Gregory could start to gain some weight on his own. Obviously that was not going to work. We went to a nutritionist (who specializes in eating disorders). She prepared a meal plan for him...and gave him a time table. If he didn't start to gain some weight, we were off to the therapist. Of course, he did not cooperate so a few weeks later we were off to the therapist...who is a family-based therapist.
3. How did you accomplish re-feeding?
NOT EASILY. It took us awhile to figure out how strict we needed to be. That's a hard thing as a parent. The therapist pushed us, but we continued to give our son too much choice. Eventually we realized that we had no option. So we sat with him each meal and each snack until he ate it all. At first, he threw food at us, he yelled, he was miserable. We stuck to our guns and each day it got a bit better. It was a long and hard fought battle. Nothing about it was easy. There were a lot of tears...both on his part and on ours. At certain points we were excited that he was better...but he would slip. Persistence is so important.
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 were somewhat lucky in that Gregory knew he was too thin and knew that he had to gain weight. He didn't like the way he looked. We just continued to talk about being healthy. We tried to focus on food as medicine. Being firm is the key. There just cannot be any negotiation at all. The anxiety is going to be there...not only for the child, but for the parents too. You have to take one meal and one snack at a time.
5. What practical problems arose and how did you handle them? School, jobs, etc.
We were extremely fortunate to not have to deal with job issues.
School was difficult...lunch time in particular and athletics. For lunch, we also were in a good place because Gregory was not medically compromised. We trusted him with eating his lunch as long as he continued to gain weight. Sports however, were an issue. He was a lacrosse player in high school and could not practice or play unless he maintained a minimum weight. This was very frustrating and difficult, particularly since Gregory refused to share his issues with his teammates. I spoke privately with the coach. He felt terrible that he let down his team but could not overcome the food restriction.
6. How did parents work together to see Maudsley succeed?
Working together...as parents, and as a family (siblings) is critical to the success of Maudsley. Honestly, I don't see it working otherwise.
7. What was the greatest challenge for you? For your child?
The last two years have been an ongoing challenge. I do not think I have ever dealt with anything so challenging in my life. Aside from the day to day issues, we all felt very alone in this process. So many people do not understand eating disorders. They just don't. They also don't understand that boys suffer from eating issues as well. It is truly amazing to me that otherwise bright people have no clue. "Just make him eat!" .... so keeping my cool rather than exploding...and using these opportunities to educate. It was difficult to come to terms with the reality that the eating disorder was a symptom of bigger conflicts. Gregory's need for perfection had been growing for some time. It was very hard to accept that all of our relationships with each other and with food had to change. It took a lot of work for all of us.
I think for Gregory there were a number of challenges. The conflicts in his mind were so difficult to resolve (and I'm not sure they are fully resolved even today). On one hand, he wanted to eat and to gain weight. On the other hand, the minute food was put in front of him, it became a struggle to actually eat it. Another huge issue for him was his social life. As a junior and senior in high school, Gregory ended up sitting home so many weekends. This was for a number of reasons. First, he did not share his battle with any of his friends. It's hard to believe that none of them knew...although boys are amazingly oblivious. Second, he didn't want to be out with friends in restaurants or at parties with food.
8. How did you go about re-establishing independent eating? How are things going now?
Slowly and steadily, one step at a time. In our situation, we had a goal..which was to allow Gregory to leave for college. He had to become more independent if he wanted to go. We started with him feeding himself at home without our supervision, moved on to eating out with us, and finally without us. Gregory was extremely motivated to leave for college and did a terrific job working towards that goal.
Now, having been at college for over two months, he continues to do well. He is weighed every other week at the health center and is seeing a therapist near school once a week. We felt it was necessary to have a safety net being far away from home. On a practical level, we made sure he had a refrigerator in his dorm room. He keeps it stocked with snacks and drinks.
We are optimistic because we also see signs that he is letting go of his rigidity and perfectionism. He is making friends and sounds very happy.
9. What advice would you give to families starting out?
Do not hesitate for one minute if you feel your child could be anorexic. Go immediately to a doctor or therapist who knows how to deal with eating disorders. Trust yourself and your gut feelings. You know your child better than anyone.