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Sell the house to save the child: Family seeks mental-health care in U.S. for girl on wait list

Kirsten can’t hide her joy when she talks about her 16-year-old daughter.

“My daughter is the kindest, sweetest girl,” she says with shining eyes. “She has had to grow up a lot faster than anyone her age. She is really funny. She is beautiful. She fights for the underdog — she has this sense of justice that is enormous.”

Most mothers think highly of their children, but few have come as close to losing them as Kirsten. (The CBC is only using her first name to protect her daughter’s privacy.)

When her daughter was just 11, she entered a spiral of worsening mental-health issues that got so bad, the family decided to sell their home to pay for life-saving treatment in the U.S.

Their struggles point to a devastating reality for those dealing with mental-health issues in Manitoba: Children are living in life-threatening situations as they wait for mental-health care. But as Kirsten enjoys coffee this fall morning in the living room of an old Winnipeg character home, she is content to know her daughter is in the kitchen, safe and sound, looking for bread to make a sandwich.

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Kirsten said she came very close to losing her daughter when her mental health began to deteriorate. (CBC)

It’s very different from five years ago, when her daughter’s body developed early and she was bullied by her peers.

“Her lights went out. She withdrew. She was not [the] free-spirited, playful, carefree child that she always was,” Kirsten says. “She started to become very quiet, very withdrawn, and you could see some emptiness in her eyes. She was struggling.”

She began cutting herself and became anorexic. The family got a private therapist for about a year, and then got her into the outpatient program of the Child and Adolescent Eating Disorders Program at Health Sciences Centre.

The timing was great, Kirsten says. The program had just been expanded and they got in quickly. The anorexia was, for want of a better word, a bit of a gift, she says. It got them in touch with an incredible team of professionals and support.

However, although the anorexia was under control within about six months, things got worse.

“If she was starving herself, she would not self-harm by cutting herself. But if she was eating, she would find a different way to self-harm,” Kirsten says.

“So it was fixing the immediate issue, but it was not getting to the underlying problem.”

Family locked up sharp objects

Doctors knew what was wrong. 

“My daughter had no love for herself. There was severe self-loathing,” Kirsten says. “That really has been the underlying issue the entire time. She was very uncomfortable with herself.”

She also suffered from severe anxiety — something that also afflicts Kirsten — and severe depression.

As time went on, things spiralled downward. The cutting was out of control. Kirsten, her husband and their elder daughter all tried to keep her safe.

“We locked up all of our sharp objects — lots of steel boxes around the house. We took off all locking doors in the house,” Kirsten says.

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After her daughter’s eating disorder subsided, Kirsten said her daughter turned to other forms of self harm. (CBC)

Despite the diagnosis and the help they received through the eating disorders program, they ended up in the Children’s Hospital emergency ward five times.

Finally, in February 2015, Kirsten’s daughter’s case was deemed severe enough for placement on a waiting list for the Intensive Child and Adolescent Treatment Service program at Health Sciences Centre, she says.

Once she was admitted to the program as an outpatient, she’d get dialectical behaviour therapy twice a week — one individual session and one group session.

Dialectical behaviour therapy is based on the principal that people who harm themselves or who are trying to die are doing it to get short-term relief from emotional pain and problems.

The therapy teaches patients other ways to manage emotional pain and problems by getting to know their feelings and understanding their thoughts. It has a proven track record, psychiatric experts say. But the wait list for the therapy was long, and while the eating disorders program provided weekly therapy and some psychiatric care, it wasn’t the program Kirsten’s daughter needed.

Watch your daughter 24/7, mother told

Despite three years of therapy and three different antidepressants, things were getting worse while they waited.

“I was told by one doctor that what I needed to do was to actually tie my daughter to myself, as a metaphor, and to not let her out of my sight, 24/7, until we got into the ICATS unit,” Kirsten says. “I adjusted my work schedule so I always took her to school. I was there to pick her up at lunch, and I was always available.”

As Kirsten lived with the fear she’d lose her daughter forever, the whole family tried to make sure their youngest was never alone.

“I tried that, I really did. Our family tried that. But you fail. You can’t.”

In May 2015, Kirsten’s daughter seriously injured herself and was admitted to the Children’s Hospital for three days, then placed in the child and adolescent psychiatry inpatient ward for two days.

They thought it would finally catapult her to the top of the Intensive Child and Adolescent Treatment Service waiting list, but in July 2015, they were told the earliest she’d be admitted to the program would be October.

That was when they decided to sell the house.

Looking across the border for help

Kirsten had been desperately seeking other help as they waited for treatment, and she’d discovered the Sunrise Residential Treatment Centre in Hurricane, Utah, a 24-hour residential treatment centre that uses dialectical behaviour therapy to treat young girls.

The day after they were given the October admission date, Kirsten, her daughter and her husband flew to Utah, where they liked what they found.

They decided to leave their daughter there, at a cost of $9,000 a month, plus travel costs. The only way they could pay for it was by selling their house — an easy choice, Kirsten says.

“As long as we are well and healthy and functioning and together. That was the dream, right there,” she says. “The material stuff doesn’t matter.”

Sunrise

The Sunrise facility in St. George, Utah. (courtesy Sunrise)

It was harder to leave their 15-year-old daughter behind at the treatment centre, she says. Their daughter had been asking for help, but she didn’t want to stay.

“It was absolutely heartbreaking, and part of me knows that if things hadn’t gotten as bad as they did, as a family, we wouldn’t have had the strength to keep driving.”

Once Kirsten got home to Manitoba, once she knew her daughter was safe for the first time in four years, she took time to breathe and reflect. Then she got mad.

“I felt that we were failed, or that our province could not take care of my daughter, and she was worthy of more,” Kirsten says. ” We should have been able to access the help she needed, and we couldn’t.”

Kirsten started a quest to get Manitoba Health to pay for her daughter’s treatment.

She had to prove that it was life-saving, that it was not available in Manitoba or Canada, and she had to show she had a plan for her daughter when she returned home.

She did it, and now three other girls’ treatment at the centre has been covered by Manitoba Health, she says.

Research needed on residential facilities

Dr. Laurence Katz, a psychiatrist and the director of child and adolescent mental health at Health Sciences Centre, acknowledges waiting lists for some vital youth mental health programs are longer than anyone would like.

It’s the result of a “profound” increase in demand, and the department is constantly looking for ways to shorten the lists, he says.

As for why there is no residential treatment facility in Canada for youth with mood disorders, Dr. Katz says research is needed.

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After being unable to find any suitable programs for her daughter in Canada, Kirsten said Manitoba paid for treatment in the United States. (CBC)

“To be clear, am I opposed to it? No,” Katz says, who doesn’t object to Manitoba Health funding out-of-province care on a case-by-case basis, when necessary. But there’s no good evidence the treatment centres provide effective outcomes, he says.

“They’re very expensive, so that’s a part of it. Of course, if it’s expensive and it helps, well then of course, let’s do that. But it is a lot of money to use without having evidence of whether they are actually effective.”

Kirsten says the intensive treatment offered at Sunrise worked for her daughter. This summer, she returned home from a full year of treatment, and she’s doing well, her mom says.

“I always say she went away this broken little girl and came back this young woman that is blowing my mind away at times,” she says, adding it’s not all “lollipops and rainbows,” but her daughter has the skills to manage now. “She’s impressive.”

And she is finally getting therapy in the Intensive Child and Adolescent Treatment Service at HSC.

Time for new walls

While the money to pay for the U.S. treatment centre came through in time to save their home, the family decided to move anyway.

“To be honest, we were ready for new walls,” Kirsten says.

“If our walls could talk, they’d tell some pretty sad stories, so we were ready for something fresh.”

She knows other families haven’t been so lucky, and she’s glad some can benefit from her fight. She can’t imagine life if her daughter had been one of those who lost the battle.

Kristen

Kirsten said she hopes a fresh start will be good for her family. (CBC)

“You know, I can push those feelings down pretty far, because that’s what we’ve had to do to cope with what’s happened to all of us in the last five years,” she says. “And if you start to pull that Band-Aid off, I’m going to lose it. We came incredibly close to that, and I can’t imagine taking another breath on this earth, past that, for a mother.”

Kirsten now volunteers with the Mood Disorders Association of Manitoba, which hosts a new drop-in for kids age 12-17 who want to share their feelings about their mood disorders.

The first session is Oct. 5 at 5:30 p.m. at the Mood Disorders Association office at 100-4 Fort St.

While the youth are talking, parents, led by Kirsten, will get together in a separate room to share as well.

Article source: http://www.cbc.ca/news/canada/manitoba/mental-health-family-united-states-1.3792823?cmp=rss