Treating the Whole Child

We’re committed to making a real difference in the mental health of children and teens.

DaShawn and Jennie Smither Connection Fall 2013

Weekly family therapy sessions are helping 5-year-old DaShawn Smither cope with a behavioral disorder he’s had since toddlerhood. His mother, JennieSmither, is one of about 60 parents testing a new Web-based tool designed to track how their therapy is progressing.

With most medical conditions, you canobjectively verify whether treatmentis having the desired effect. An X-raytestifies as to whether the broken boneis knitting together; a blood test provesthe infection is gone.

But there’s no lab test for mentalhealth. Determining whether treatmentfor mental illness is working hastypically been based on the subjectiveimpressions of the person providingthe treatment.

The lack of objective evidence aboutthe effectiveness of treatment hasimportant implications, says Dr. Matthew Speltz, a psychologist and researcherat Seattle Children’s. How do you knowwhen to change or stop treatment ifyou don’t have a reliable way to tellwhether it’s working? How do youknow it will be worthwhile to stick withit, even when it’s difficult or expensiveto do so?

Collaborative assessment

Speltz and Liu Connection Fall 2013

Drs. Matt Speltz and Freda
Liu are developing a
Web-based tool to help
determine whether or not
mental health treatment is
working for a particular patient.

Speltz and Drs. Freda Liu and NathanielJungbluth are collaborating withDr. Corey Fagan and Jon Hauser fromthe University of Washington todevelop a Web-based measurementfeedback system (MFS) for trackingthe effectiveness of mental healthtreatment. The MFS was originallydeveloped by Fagan for adults. Speltzand company are working with theirUW colleagues to tailor it for children,teens and their families, and are testingit with patients receiving outpatientmental health services at Children’s.

Each week, a patient’s parents (andpotentially even his teachers) log on toa secure Web page to answer questionsabout feelings and behaviors relatedto the child’s diagnosis and the goalsfor treatment.

If the patient is old enough to read,and to understand her diagnosis, she rates her own symptoms and progressby responding to statements like, “This week, I felt miserable or unhappy:never, not true, true, sometimes, often.”

The MFS takes the reports ofpatient, parents and teacher anddisplays each person’s input on graphsthat show their view of the patient’sprogress over time.

There’s no lab test for mental illness.

“Since teachers typically aren’tinvolved in our treatment process, theyare just seeing the results or lack ofresults,” says Speltz. “Our hope is tomake it quick and easy for teachersto weigh in at crucial points in thetreatment to provide their impressionsof the child’s progress.”

Jennie Smither is one of about60 parents testing the new tool. Herson DaShawn has been treated for abehavioral disorder since he was atoddler. DaShawn, now 5, and hismom meet for weekly therapy withJungbluth. Since DaShawn is so young,the therapy focuses on developingSmither’s parenting skills so she can help him regulate his emotions.

Smither says she appreciates thatthe tool is easy to use – she can fillit out on her home computer, smartphone or at a kiosk in the clinic waitingarea. “Responding to the questionsmakes me think about what’s gone onin the past week before the session, sowe can use the time in the session tofocus more easily on goals.”

Jungbluth says the MFS is a valuabletool to shape the course of therapyweek to week. “For example, let’s saytoday the plan was to talk about thisskill or address this specific problembehavior that had been raised before.We call up the survey results at thestart of session. Wow, mom is noticingher overreactivity was a lot higherthis week. I ask about that, and sureenough there’s an example that’s veryinformative. Well, what went wrongthere? So we spend some timedeconstructing that.”

“I’m a pretty visual person,” Smithersays. “I didn’t realize how much I liked using the tracking tool until we satdown and looked at the data. In thepast, we just looked at the numberof outbursts, but with it charted outon the graph, I can see DaShawn’sgetting better.”

While it’s not as clear-cut as a labtest, the collaborative assessment thatMFS offers could be an important stepin the right direction.

A roadmap home

When police escorted Sarah Edwards’son Marquee to Children’s EmergencyDepartment (ED) for the third time, sheknew it was no longer safe to have himin her home.

Although he’s only 8 years old,Marquee already has a long history offrequent violent outbursts, many ofthem aimed at his mother. Privateoutpatient therapy proved no matchfor his erratic, aggressive behavior.When he tried to steal her car, it wasclear to Edwards that Marquee wasbeyond her coping skills. “It’s reallyhard when you’re afraid of your ownkid,” she acknowledges.

Luckily, this time there was a bedavailable for Marquee in Children’sInpatient Psychiatric Unit (IPU).

On any given day, the waitlist forChildren’s IPU holds the names of 15to 30 children or teens in crisis. Whenthere’s no bed available here, a childmay need to wait up to 10 days athome or in an ED somewhere inthe region.

“These are kids who are an imminentdanger to themselves or others andhave exhausted the resources in theircommunity,” says Dr. Kelly Schloredt,who co-leads the IPU’s clinical team.

Worsening the situation is the factthat Children’s is one of only a fewhospitals in Washington, Alaska, Montanaand Idaho that consistently treats mentally ill kids under 12 and kids withautism as well as a mental disorder.

Over the next two years, Children’swill double the number of IPU beds,from the current 20 to a total of 41.Increasing capacity is important, saysSchloredt, but so is making sure that thetreatment kids are getting is effective.

Schloredt and her team havedeveloped treatment “roadmaps” calledclinical pathways to outline a plan for thechild’s entire hospitalization, based ontheir diagnosis. So far, they’ve developedpathways for depressive disorders anddisruptive behavior disorders – the twoconditions that account for the vastmajority of IPU patients.

1 in 5 kids experiences some form of mental illness.

“Clinical pathways enable us to talkwith the family immediately about whatwe’ll be doing: here are the necessaryactivities for you and your child,here’s the evidence that these makea difference, and we’ll work with youto pass these on to your outpatientteam at home,” says Schloredt.

That clinical pathway was Marquee’sroad home. He’s now on effectivemedications, and has gained enoughskills in regulating his emotions andbehavior to live with his mom again.

For her part, Edwards is grateful forthe nonjudgmental support of the IPUstaff, and their ability to identify andconnect her with resources in thecommunity. One of the most valuablethings, she says, is the parenting classesshe attended as part of Marquee’shospitalization. “It’s not intuitive toparent a kid with mental health issues.”

“Bigger than your disease”

Carin Cunningham Connection Fall 2013

Dr. Carin Cunningham specializes
in helping kidsand teens deal
with the emotional and social
aspects of a serious illness like
Crohn’s disease. “My role is to
help these kids maximize their
potential,” she says.

Starting kindergarten is an excitingand stressful transition for any child.For Ethan Roberts, the stress wasamplified by the fact that he wasdiagnosed with Crohn’s disease justbefore school began.

Crohn’s inflames the lining ofthe gastrointestinal tract, causingabdominal pain, fatigue, frequentdiarrhea, and severely reducing thebody’s ability to take in nutrients.Treatment involves drastic changesto the diet and time-consumingintravenous infusions of medicationsthat cause more fatigue.

Although Ethan did OK at school,once safely home he would lash outat his parents in angry outbursts thatseemed uncharacteristic. “We tookEthan to see two different psychiatrists,but they were like deer in theheadlights,” says Ethan’s dad, JeffRoberts. “They just didn’t get Crohn’s.”

Enter Dr. Carin Cunningham, apsychologist who specializes in treatingkids with gastrointestinal diseases likeCrohn’s. She knows the emotional andpsychological toll that dealing with anintense, persistent illness can have onkids – even when they don’t have anunderlying mental illness. That’s why Children’s is beginning to includepsychologists as part of clinical teamsfor chronic conditions like Crohn’s, andlife-threatening diseases like cancer.

“Dr. Cunningham helped Ethan see thathis life is bigger than his disease.”

Jeff Roberts

Ethan Roberts IV Fall 2013 Connection

Ethan and his parents began seeingCunningham several times a month. “We knew the minute we sat downwith her that she understood Crohn’s,”Roberts says. “Her knowledge helpedlift the weight off our shoulders. She’sable to treat the emotional and mentalside of it – for him, and us.” Cunningham literally “wrote thebook” on this topic; she’s the authorof a comprehensive resource onthe biopsychosocial aspects ofgastrointestinal disorders in kids.

Ethan and Jeff Roberts Connection Fall 2013

Jeff Roberts (pictured, right)
says regular medication
infusions keep his 8-year-old
son Ethan’s Crohn’s disease
under control, but it’s the
coping strategies Ethan
learned from pediatric
psychologistDr. Carin
Cunningham that made it
possible for Ethan to take
back control of his life.

“It’s so hard to be a kid and gothrough this,” says Cunningham. “My goal is to help patients like Ethandeal with their illness so that it hasthe least impact on their developmentas a person, and also to help parentssupport their children. Most kids withCrohn’s just want to be kids and livetheir normal lives. My role is to helpthem do just that.”

Having a pediatric psychologist “embedded” in the care team meansthat both physicians and families haveaccess to psychological resources rightin clinic. “Plus,” says Cunningham, “itmakes the transition easier and helpsside-step any stigma about ‘seeing apsychologist’ when I’m just part of theteam, like the nutritionist or child life specialist.”

Cunningham helped Ethan understandand control his body better, and findhealthy ways to express what he needsto his parents.

For Roberts, the change is summedup in one of the main lessons thatCunningham taught his son, now 8and in second grade. “She’s helpedEthan see that his life is bigger thanhis disease.”

Published in Connection magazine, September 2013