We struggled to find mental health support for our son with PWS
It took years to find answers and treatment for psychiatric issues
Few things scare a parent more than the possibility of their child becoming mentally ill. If there is a history of mental illness in the family, an observant parent will be worried and watchful for signs.
When our son, Robert, was born with Prader-Willi syndrome 35 years ago, we had no warning. I took him to the Prader-Willi clinic at Gillette Children’s Hospital in St. Paul, Minnesota, where an endocrinologist, nutritionist, and psychologist provided us with information. However, the information focused on overeating behaviors and meltdowns; there was no mention of possible psychiatric problems looming on the horizon. Our biggest fear was that our son would die from morbid obesity by the age of 40.
During Robert’s childhood and adolescence, significant changes happened in our family life. My mother, who had been enormously supportive, died suddenly from a heart condition. Robert and I were the first on scene, and neither of us has ever forgotten it. I wondered how we would cope.
Later, my daughter and my niece left for college. Their caregiving, protection, and support were greatly missed.
When Robert transitioned to high school, his teachers were great, but they weren’t familiar with Prader-Willi syndrome. Robert’s master manipulations gained him many privileges.
As a teenager, he wanted to learn how to drive. We felt it was impossible, so we decided to have him tested. The assessor believed he was incapable of driving. Upon hearing the results, Robert screamed, “It’s that man’s fault I didn’t pass!” His screaming lasted all the way to the car.
“That went well,” I thought despairingly.
During his senior year, Robert disappeared into his room after school one day. He came out wearing the suit he’d worn to speech team events. “I am getting married today,” he announced.
“What?! To whom?” I asked.
“Rachel, my weight-training teacher,” he said.
“Not today!” I replied.
I was severely depressed and had no idea what to do. Minimizing Robert’s problems and denying their severity only worked for a while.
Seeking help with mental health
The December after his senior year, Robert started talking about “going through a portal.” My husband and sister took him to a mental health emergency room, where he was admitted immediately.
Mental health units are the saddest places to visit. Few of the 20 or so patients gathered in the large room had visitors, but we went to see our boy every night. Robert was totally unresponsive. His medications made him oblivious but didn’t stop him from mumbling constantly to imaginary people.
The psychiatrist continued to add medications, but couldn’t find a solution. Unfortunately, Robert’s diet didn’t receive proper attention there. Although the staff gave him diet salad dressing, he took food from other patients’ trays and gained 30 pounds in a month.
We realized that once he was released from the mental health hospital, he would be impossible to care for at home. We were overwhelmed and scared.
That’s when my daughter found Stepping Out, a group home specifically for people with Prader-Willi syndrome. Bonnie Bates, the late homeowner, became my angel. During Robert’s birthday party at the hospital, Bonnie convinced him to live at Stepping Out. I’m sure he thought, “Cake every day!”
Bonnie shared with us what she had learned about Prader-Willi and mental illness. We agreed that, in Robert, the syndrome was probably caused by a genetic abnormality called maternal uniparental disomy, which is associated with a higher incidence of mental illness than other causes of the disease.
In his deluded state, Robert would need one-on-one care. Having secured additional state funding, the group home would provide that and more.
Robert lost 100 pounds in one year on Stepping Out’s calorie-controlled diet and exercise program. However, the mental health problems continued. He lived in a parallel universe with his imaginary friends. When I tried to talk to him about it, he said, “I have 2,000 brothers and sisters. They need me more.”
Bonnie continued to search for better help, and we went from one psychiatrist to another seeking answers. Eventually, Bonnie found a psychiatric nurse practitioner who prescribed Haldol (haloperidol). It was immediately effective. Robert stopped talking to imaginary friends and became coherent.
He continues to take several medications and is carefully monitored at his group home. We wish he didn’t have to be so medicated, but we accept what is. He still experiences some occasional behavioral issues and food obsessions, but he enjoys his life. We are grateful to have our funny, compassionate son back.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.