Good afternoon. Thank you for giving me the opportunity to speak today.
First, I want to acknowledge that families with sons get eating disorders as well. We must not forget our sons. I feel if we make this just about girls and women, we are only perpetuating the stigma and myths attached to this illness.
I can give you my family's story to give you an idea of what happens with successful interventions for anorexia, but I urge you to hear from other families who have children who have had to transition into the adult system, who have sons, who have children younger than 10 when diagnosed, who have been on wait-lists and have been in-patients, and who have children with binge-eating disorder or bulimia.
My daughter is 17 years old this month. She has been in recovery for almost four years. She is a happy, healthy, beautiful teenager, full of life and spark. Her father and I keep an eye out for signs and symptoms that we have educated ourselves to be aware of. We store in the back of our minds that recovery is precious and that relapses can occur. So we watch, ready to step in if necessary and put recovery back on track. We know there are parents of young adults who have successfully helped their children to maintain recovery, and that there are steps we can take to help support our daughter once she is of legal age.
My daughter was 13 when diagnosed with restrictive anorexia nervosa. She was 12 when she fell off her growth trajectory. During her well-child visit her height and weight were plugged into a formula and the result was considered a normal BMI for her age. Research shows that eating disorder signs and symptoms first begin to appear at least two years before diagnosis, when height and weight are plotted on a growth chart. There was also discussion around age-relevant stages of development, but nothing about signs and symptoms of eating disorders.
She never had body image issues. There was no talk of diets or dieting in our house.
We had a series of medical misadventures in our search to find out what to do to help our daughter. I was asked to call the eating disorders clinic intake. A parent would never have to make a self-referral to an oncology clinic if cancer were a suspected diagnosis. We were triaged by an intake worker who asked me questions through the lens of adult eating disorders. Children and adolescents are not small adults.
We were referred back to our family health team to meet with a mental health counsellor. In the meantime, I watched my daughter's health deteriorate...anxious, cold, weak, socially withdrawn, running back and forth through the woods, skating laps for hours on the pond, running up and down the stairs, unable to sit for any length of time, and eating very little. Internally, her brain was shrinking, puberty stalled, growth stopped, her bones were thinning, and her heart rate slowed.
I found the online organization F.E.A.S.T., Families Empowered and Supporting Treatment of Eating Disorders, and its online parent forum, Around the Dinner Table, and discovered that there was evidence-based treatment for adolescents. Most importantly, I learned that our family could help my daughter recover from her eating disorder, and that there was an evidence-based treatment called family-based treatment, or FBT, that was the best shot at recovery for adolescents.
Unsure of where this treatment was available, my husband and I began to re-feed our daughter using the Maudsley method, and I read everything I could get my hands on. I felt supported and encouraged by other parents who were also experiencing the isolation, the blaming, and the lack of adequate and timely treatment and support for families.
I'd like to walk you through re-feeding, what it looks like, and what it takes to work. We did this for five months until my daughter was weight-restored, which is a moving target in someone so young, due to puberty and adolescent growth. Our family focused our life around getting our daughter nutritionally weight-restored. It's a 24/7 job. I resigned from my job, and we made our house into an in-patient unit. My goal was to feed my daughter one bite at a time.
First, I'd like you to imagine your worst fear. You can probably avoid this fear and the anxiety that it creates. We were exposing our daughter to her worst fear, but she could not avoid food or she would die. Our daughter would cry, scream, spit, hit, punch, scratch, and yell that it was too much food, that her stomach hurt, that she wanted to die. Plates of food were thrown. My daughter would fall into a catatonic state. It was like a scene from The Exorcist.
Meals could take hours, but food is medicine. We learned to separate the eating disorder from our daughter. Intuitively, you do not want to see your child upset and in pain, but when we're re-feeding, there is no choice. There is no rationalizing with an eating disorder.
This was not forced feeding, and it was not punitive. It was a requirement, using whatever leverage we had. Life stops until you eat. There is no option: food is your medicine. If meals are refused, then plan B is put in place: a trip to emergency for an NG tube feed, or a call to the mobile crisis unit.
I was lucky that I never had to do this. We weathered through the emotional dysregulation, anxiety, and lengthy meal times. From my reading I understood what was happening in the brain. This made it easier for me to exhibit patience. My daughter was exhibiting a typical fight-or-flight response to an anxious situation. From a neurobiological standpoint it made sense.
My son, who is two years older than his sister, would try to offer her distractions of stories and singing at meals. Many times dinner would run until 11 p.m. He would study and sleep with earplugs in. After meals we would sit with her to prevent her from compulsively exercising and standing and distracting her from the physical discomfort she felt. We needed to close the loopholes around the illness. I slept in my daughter's room for five months because she was frightened and I had to monitor for any nighttime compulsive exercising. I monitored her computer use to make sure she was not accessing pro-ana sites and that she was not discussing suicide. We listened outside the bathroom to make sure she didn't purge or exercise. We barricaded our loft so that it wasn't a safety risk, we hid the knives and medications. We turned the TV off to avoid content that could be triggering and upsetting to all of us. When she would run out into the snow in her bare feet to avoid a meal my husband, son, and I would have to chase her, bringing her back kicking and screaming. In early days, I shadowed her 24/7 and she hated it.
Due to exercise restriction I drove my daughter to and from school, and then I drove back to the school twice a day to sit with her during two nutrition breaks. She was not allowed to be in gym class or participate in any of the extracurricular sports that she loved. I looked through the course curriculum for her grade to make sure there was no information within the curriculum that could be triggering, and that she could not participate in. Ironically, she had just finished the unit on eating disorders.
A few weeks into re-feeding, our GP referred us to a pediatrician and adolescent psychiatrist. Neither knew much about the Maudsley method of re-feeding or family-based treatment and how it worked. Our pediatrician told me it was too hard, that I should return to work and give my daughter age-appropriate independence around food preparation and eating. This was fundamentally inaccurate and dangerous advice.
The pediatrician referred us to a child psychologist to make our daughter feel better about herself. The psychologist said that she would always have anorexia, but was unaware of family-based treatment and that eating disorders are fully treatable. What a waste of time and money, and how crushing for my 13-year-old daughter to hear.
We finally entered the FBT adolescent eating disorders program in my hometown three weeks after re-feeding began. We had already begun to see results. Our daughter was smiling and less withdrawn at school. She began to sing again. Over the next five months, with support from FBT, and then participating in a year-long, multi-family treatment program, we managed to get my daughter's weight restored and into recovery.
With food and time, the exercise compulsion stopped. The OCD-like movements decreased. She socialized and she began to enjoy food again. I almost cried when she told me how good a meal tasted. Family mealtimes were no longer violent or unenjoyable.
But this is not a sprint; it's a marathon of vigilance. It takes days and months and years of chasing growth through puberty and adolescence. It's about the dance of figuring out when and how much control over food choices to slowly give back to your child. It's about not letting your child sleep in like other teens because they must eat regularly. It's about figuring out what courses your child cannot take in school, such as personal fitness, nutrition, or physical education, if they are still at a vulnerable stage in their recovery.
It's about educating teachers to make sure your child is allowed to eat in class to maintain regular nutrition. It's about figuring out whether your child is at a stage in recovery where he or she can participate in class trips and summer camp, and educating these institutions to see if modifications can be put in place to support recovery and give your child a sense of normalcy and accomplishment at the same time.
Imagine trying to do all this as a single, self-employed parent; if your other children are very young or have their own special needs; if you have to provide eldercare as well; or if you have your own health concerns. What if your child is physically larger than you?
Comorbid conditions like ADHD, OCD, depression, or substance abuse must be addressed as well.
Imagine reading about FBT in Saskatchewan or P.E.I. or Quebec, and realizing that you have no way of accessing this therapy that has the best treatment outcomes. What if your child has had to be hospitalized, and then after discharge you are placed on a wait-list for a program and you helplessly watch your child begin to slip back into the illness because you need support? Or what if you have a child who is over 18 and your family wants to use FBT, but the centre where you live will only see your child individually as an adult? What about those families for whom FBT doesn't work?
l suffered from depression and post-traumatic stress after re-feeding our daughter. Our now 19-year-old son became depressed due to the stress and trauma of his family putting all their energy and attention into dealing with the eating disorder. My daughter felt shame and guilt for putting her family through this ordeal despite our reassurances that nobody was to blame. She will sometimes have flashbacks of the trauma of re-feeding. They are not accurate, but they are there.
This has not been an easy road and we are not finished. We need to make sure that when our daughter leaves home she has a tool kit for recovery and resilience. When your child becomes ill with an eating disorder at a young age and you have been the safety net to prevent relapse, it is very easy to be lulled into thinking that a child has recovered and there won't be a relapse. We must be cautiously vigilant yet allow our children to live in the real, unfiltered world.
Thank you.
