I would like to thank the committee for giving me this opportunity to present to you. I'm grateful to be able to give you a sense of what it is like for a family to navigate the system and care for a child with an eating disorder.
The field of eating disorder research and treatment has changed significantly in the last 10 years. The view of parents and their role has changed dramatically. There is now a current, effective, evidence-based treatment for adolescents, and it relies heavily on family involvement. We now know that families don't cause eating disorders and that families are in fact vital to their children's recovery.
My family's story is in many ways a version of a best-case scenario in the current treatment landscape. I say this for the following reasons.
I recognized that something was wrong with my daughter very early on. I was prepared to take immediate action. I managed to find up-to-date, evidence-based information quickly. I was ultimately connected to stellar hospital treatment, and I worked to link myself to support. My family's case is one example of “as good as it gets”, and still the experience was devastating. It took nine months from my first recognizing that something was wrong with my daughter to her being admitted to the hospital and beginning treatment. It took another year from the beginning of treatment until she was firmly in recovery.
It's an arduous and long journey. Caring for a child with a life-threatening illness is difficult; there's no getting around that. However, misinformation, stigma, and lack of accessible resources added to our burden. My daughter was diagnosed with anorexia when she was 10 years old. With this illness, early intervention is key. Early treatment correlates with better outcomes. Often, what parents see first are actually late-stage symptoms. I first noticed something was amiss in September 2010. What I first noticed were not eating disorder related changes but rather a change in her temperament. I had a 17-year-old and a 10-year-old, and both were happy and healthy. An eating disorder was not on my radar.
Our home environment was probably as close to an experiment in eating disorder prevention as one could get. There was no scale in our home. We did not have cable. I'd never been on a diet in my life, and I grew up in a culture that did not internalize the thin ideal. I worked to pass that on to my children also. We consciously spoke about healthy bodies of any size, and I raised them to be conscious and critical of media messages. Still, she got an eating disorder.
My daughter was a funny, independent kid. She was socially comfortable and had many friends. She loved school. She took piano and choir, not dance or gymnastics. She was affectionate and goofy and she was 10. Who gets an eating disorder at 10?, I thought. The fact that she did not fit the stereotypical image of an ED sufferer worked against us. It allowed me to question my instincts and to unthink what I saw. It allowed me to miss what I now know were clear signs.
Between January and the end of April 2011, I took her to the doctor three times. I expressed that something was wrong, that she was not eating, that she was complaining of a tummy ache, and that she seemed to be losing weight and was not herself. No alarms were sounded. By May, however, I knew that we had a serious problem. On May 15, I met her at school and I took her for lunch, for pizza, and I told her she had to finish. She took two bites and something washed over her and she said, “Mommy, I can't eat.” I went from the lunch to the school and I told them we would not be returning, and then I went straight to the doctor. The doctor spoke to her and finally said, “Yes, there's a problem.” He made a referral to the pediatric ED program at our local children's hospital. The doctor also told me, “Don't try to make her eat. You're not going to be able to. Don't be the food police.”
I was told nothing else at that time. I was given no information on eating disorders and no direction. I went home and I tried to get her to eat, and when I couldn't, I went on the Internet and I started searching. I remembered I had read a New York Times piece a few years earlier about a new treatment for anorexia called Maudsley. I searched for that piece and I was linked to information on family-based treatment, and I started to educate myself.
What I needed was better information and I needed more informed first-line treatment. I needed my family doctor to have the skills to identify earlier and to provide me with accurate information so that I could take action. Everything I found that was helpful to me I found on my own, and that should not have been the case. I should have been told, “Your daughter has a biological brain disorder. It's treatable. There are evidence-based practices for this age group.” I should have been told to feed my child, and I should have been supported in doing so.
To treat this illness, parents have to build a new skill set quickly. Understanding how the illness works and effective treatment methods early helps with this. What happens when you don't get that information is that you lose time, your confidence is undermined, and all the while your child is getting sicker. I often think about how things might have been different if I hadn't lost those early months.
During the time that we were on the wait list for the assessment, I tried to find community help. I phoned everywhere I could, and I felt like I was screaming in the wind. There was no help in the community for a 10-year-old. I knew that nutritional rehabilitation should be my focus, but I needed help. I felt like I was watching my child die slowly.
I took her to the emergency room at Sick Kids every single day, and two weeks later she was medically unstable and she was admitted. She spent seven weeks in-patient at the Hospital for Sick Children. On the ward at that time there was another 10-year-old and two 8-year-olds. We moved from in-patient to outpatient, and outpatient consisted of a clinic appointment and a family-based treatment appointment once a week. The other six and a half days of the week her care was in my hands.
This phase of treatment is called outpatient, but the work of treatment is not happening during the clinic visits. The work of treatment is happening at home. She gained 20 pounds in the hospital and she gained another 30 pounds at home.
With family-based treatment, the majority of work is happening at home and it is done by families. Treatment consists of feeding and interrupting symptoms. Food is medicine. It sounds easy, but getting an anorexic child to eat is anything but. My daughter will now say that it felt like I was pushing her out of an airplane without a parachute six times a day. What we were doing was exposure therapy, and cajoling, and bribing, and forcing. Nothing made it easier. The only thing that worked was making not eating not an option. If she ran and hid under the bed, I had to pull her out. If she threw the food, I had to plate it again. If she just sat there, I had to sit with her for as long as it took.
Quite simply, parents have to be stronger than the eating disorder. They have to be non-negotiable brick walls of love and compassion and strength. It's a different type of parenting and nothing you've done before prepares you for it. It is counter-instinctual, rather than soothe them you have to stay steady with them through tremendous distress. Eventually you get compliance and the weight goes on, and as they get closer to health, you begin to see your child return. It takes constant vigilance. She slept in my bed for eight months. I watched every meal go in for months. The learning curve is steep. It's hard on a family. Everybody feels it: siblings, partners, grandparents. It's a very isolating experience for families. There's stigma and shame, and most people simply don't understand. Your world becomes very small.
I focused on her recovery. I made that my number one priority. I took time from work and I took out a line of credit. My daughter was back at school in the fall with support. I met her every day for lunch for the entire school year. By the end of the school year, she was in true recovery. This past September, we saw a flare-up of symptoms due to anxiety that she was experiencing over a move to a new school. I knew what to look for this time and I addressed it right away. I got her plugged back into treatment and she's doing wonderfully now.
Parents are able to do this, but they need rings of support around them. They cannot do it alone and they should not have to.
Thank you.
I'll take any questions.