These days, Effie is the fifth-grade class clown, a 10-year-old who loves to read and always has a sketchbook close by, unless she’s riding horses. It’s hard to imagine her four years ago, when her behavior at home was so out of control, her parents had removed all the furniture from her room except the mattress so she wouldn’t hurt herself — or them.
“It was scary,” her mother, Jen, says of earlier times. “We couldn’t find anything to help her calm down.”
Treatment in the Department of Child and Adolescent Psychiatry and Behavioral Services (DCAPBS) at Children’s Hospital of Philadelphia (CHOP) changed everything. The combination of medication and therapy has allowed Effie to manage a constellation of mental health issues: disruptive mood dysregulation disorder, generalized anxiety disorder and attention deficit/hyperactivity disorder (ADHD). Today, she’s thriving.
Problems surfaced at 3 years old
Starting about when she was 3, Effie began throwing tantrums that went well beyond those of a typical preschooler. Her parents, Jen and Andrew, sought help through play-based therapy and a counselor, who taught her strategies to regulate her “big feelings.”
“She learned a lot in cognitive behavioral therapy,” Jen says. “She could tell you what she should do — but she wasn’t able to do it.”
Things escalated over the next few years. While Effie was a model elementary school student, once she got home, all those emotions she had kept inside would explode. She kicked her bedroom door so violently, it came off the hinges. She could throw her furniture, rip her clothes and scream at her parents.
“She would say things like, ‘I hate myself, I’m so stupid. Why do you even want me in this family?’ It was heartbreaking,” Jen says. “We were totally walking on eggshells all the time. We never knew what would set her off. It could be something as simple as asking: Do you want Doritos or potato chips?”
Turning to CHOP
It was clear to Jen and Andrew that the help Effie was getting was not enough. After a particularly violent episode, Jen told Andrew, “I’m calling CHOP. Maybe they can help her.”
They made an appointment with DCAPBS. After a thorough evaluation, Effie was diagnosed with disruptive mood dysregulation disorder (DMDD) and anxiety. Because behavioral modification therapies had not helped, her treatment team and family agreed to try medication
“Almost instantly, things got better,” Jen says.
DMDD is a relatively new diagnosis for children, having been added to the Diagnostic and Statistical Manual of Mental Disorders (commonly called the DSM) in 2013. It describes behaviors that go well beyond being irritable, upset or moody now and then or an occasional temper tantrum. Children with this diagnosis struggle to regulate their emotions in ways that impact their functioning at home, school and with friends. It is common for children with this diagnosis to also have problems with executive function (ADHD) and anxiety, which was the case for Effie.
With the medication helping her better control the tantrums and explosive episodes, Effie and her parents began therapy at CHOP with a licensed clinical social worker. Therapy helped Effie learn to recognize when she was starting to lose it and use techniques to calm herself, while Jen and Andrew learned strategies to support Effie at home.
One key change was to build structure into Effie’s day. “She’s a very routine-loving kid and does well with structures in place at home,” Jen says. “She is allowed 45 minutes with the iPad when she gets home from school and, then after a booster dose of her ADHD medication, we go on to other activities and homework. Medication helps her deal with all those things.”
Effie has grown to be an excellent self-advocate for her care and understands that an additional nonstimulant ADHD medication that she takes in the evening helps her be less irritable. “Effie even can verbalize it. She tells us she feels better when she’s on it,” Andrew says.
‘Coming into her own’
When Effie first started treatment, she didn’t want any of her friends to know.
“She was initially very secretive about going to CHOP,” Jen says. “Now, she’s an open book about everything — her medication, her treatment. She’s very good about telling her story.”
Instead of trying to become who she is not, Effie embraces her quirkiness, and so do her friends.
Jen says: “She’s coming into her own.”
Effie takes art classes and is learning about pottery and watercolor. She goes horseback riding once a week. Reading continues to be a favorite hobby. Her bedroom furniture is back in place.
Quarterly appointments at new facility
Effie continues to attend behavioral health appointments to make sure the medications are still effective and to talk through any emerging problems. Now the appointments are in the Center for Advanced Behavioral Healthcare at 4601 Market St. in Philadelphia, CHOP’s new home for outpatient mental and behavioral health treatment.
“We love the new space,” says Jen. “It’s so much more kid friendly than the old location.”
There are still a few bumps — "She may still slam and throw things, but the intensity and frequency are so much less,” Jen says — but overall, Effie’s transformation has been life-changing for the whole family.
“It’s such a sense of relief,” Andrew says. “We’re functioning as a family now.”
“I feel like life is just better. I attribute it all to CHOP. Everyone at CHOP has been so supportive along the way. ”