Dear ICED: A mother’s experience in navigating Eating Disorder Treatment in Ontario

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Her daughter was dying:  A mother’s experience in navigating Eating Disorder Treatment in Ontario
Ontario, Canada

My name is Julie.

I am a mother of four, one son and 3 daughters, the last two being twins. I am primarily a stay at home mother, with a self-employed husband who works mostly from home. I live just outside of a small town in Ontario.

When “G”, my youngest, was approaching her 17th birthday, I noticed changes in mood as well as body. She was an excellent student and rugby player. As the summer rolled around and she turned 17, there was a noticeable weight loss and mood changes as she was eating “healthy”. Now with protruding bones and seemingly very depressed, I knew we were dealing with Anorexia and Depression.

I got her an appointment with the Family and Youth Clinic at Peterborough Regional Hospital, one hour away, with a team of a social worker, nurse practitioner and dietitian, as well as our local family doctor. Blood tests indicated malnourishment, ECG showed a very dangerously low heart rate, and mentally she was unstable, saying she had a plan for suicide. She was always tired and cold.

She was no longer the daughter I knew. She was withdrawn, moody, sometimes mildly violent and had started to self harm.

As her BMI dropped, I was told she would be put on a wait list for SickKids or CHEO. I was told the wait was 3 to 6 months. At this point I worried that her organs, particularly her weak heart, would deteriorate to the point of shutting down.

I knew my daughter was dying. Since she was so medically unstable, and our timing was right, “G” ended up jumping the queue at SickKids and spent a month there. Ten months of outpatient treatment at PRHC, with a psychiatrist added to the team, she was discharged and is now away at college where she sees a nurse practitioner once per week.

My daughter was one of the lucky ones.

I got her into treatment quickly, mainly from my own research; my doctor has had no experience in dealing with Eating Disorders and could not help except to run tests and monitor her vitals. She had to learn along the way, which did not instill confidence in me as a parent of a very sick child. My daughter was treated quickly due to her medical instability, but unfortunately she had to be close to death to get that treatment.

Now away at college and “in recovery” my daughter is responsible for her own health. If she relapses, the story will be different. It may not have the same happy ending as resources are sadly lacking for her age group (young adults 18 – 25).

In the meantime I stay vigilant and continue to research ways in which to help her.