It was almost midnight on a relaxing Rhode Island vacation when Tracey Braham’s 13-year-old daughter, Sarah, came running to her bedside, grabbing her throat. “I can’t breathe. I need to go to the emergency room. I’m dying!”

“As a parent, my first instinct was to help Sarah calm down and try to figure out what was going on with her physically,” says Tracey. “Was she choking? Could it be an allergic reaction?”

Three years earlier, Sarah had been diagnosed with celiac disease, an immune reaction to eating gluten. Sarah swore she hadn’t eaten anything new, but she was clearly suffering. “She said her heart was racing and her throat was swelling shut. She was adamant that she was dying. It was very scary,” says Tracey.

At the emergency room, doctors couldn’t determine what was causing Sarah’s symptoms.

When the crisis passed, the Braham family returned to Virginia Beach with unanswered questions about Sarah’s health. She continued to feel tightness in her throat and fluttering in her stomach. Soon after, her complaints included headaches, dizziness, numbness, sweaty palms, and joint pain.

Sarah reported these symptoms to her CHKD gastroenterologist who examined her and ran tests to try to figure out the cause of her symptoms. But all tests confirmed that Sarah was in good physical health.

“That’s when we were faced with considering whether something else could be causing the problem,” says Tracey.

Sarah was referred to Alexandra Laramee, a licensed clinical social worker at CHKD and manager of the mental health program. This type of referral is not uncommon. Dealing with a chronic physical illness like Sarah’s celiac disease, which requires her to eat a wheat-free diet, can affect a young person’s mental health.

Laramee diagnosed Sarah with generalized anxiety disorder and somatic symptom disorder, which simply means that her anxiety manifests itself in physical symptoms.

“Mental health issues are chronic diseases too – it’s not like a surgical procedure where we can remove or fix something all at once. There are periods of stability and periods of needing therapy,” says Laramee. For any child facing mental health challenges, early intervention and treatment is critical to recovery.

 Local children seeking mental health care are facing a crisis. There are not enough inpatient psychiatric beds available for the children and teens who need them. Patients wait for hours or even days in the emergency department before available space can be found – often at a facility many hours away. Even those who aren’t in need of inpatient care may wait weeks for an appointment with a licensed clinician who can diagnose and treat them. Mental health care for children is a waiting game. And the kids can’t wait

CHKD is answering this critical need, ushering in a new era of mental health services for children in our region and beyond. Armed with the recent Virginia Department of Health approval to add 60 inpatient psychiatric beds for children and teens, CHKD is developing plans for a new mental health facility on its Norfolk campus that will offer both inpatient and outpatient care, in addition to increasing outpatient mental health services at its locations throughout the region. 

Now 16, Sarah is proud of her progress, but says she spent many months struggling with her diagnosis. “I always thought anxiety was just about worrying. I thought, I’m not worried about anything. It can’t be that. It was hard to handle,” Sarah says.

During their scheduled weekly appointments, Sarah and Laramee worked through cognitive behavioral therapy (CBT), one of the eight evidence-based treatments offered by CHKD’s mental health team. CBT teaches patients how to connect thoughts to behaviors and gives them a set of problem-solving principles to manage their illness. For Sarah, that meant learning to recognize and cope with her feelings in a healthy way and to master situations that may lead to feeling anxious.

Recovery from this sort of challenge takes hard work. And the pathway is not always clear. After a few sessions of therapy with Laramee, Sarah began to feel frustrated. She was still having a hard time accepting that anxiety could be the root cause of her physical symptoms. And she felt like progress was taking too long. She spiraled into depression.

“I felt like nobody could help me feel better,” says Sarah. “I felt like the only thing to do was to go to sleep and not wake up, so I wouldn’t have to suffer the pain and feel sad anymore.”

“Finding out my daughter didn’t want to be around anymore was the worst day of my life,” says Sarah’s dad, Steve. “It ripped my heart out. I thought, What have I done wrong?”

For six months, Sarah’s depression kept her from having a healthy social life. She felt too nervous to go out to dinner with friends. She lied about being busy so she didn’t have to hang out. And she blamed herself for the way she was feeling.

“When your child has everything they need in life and has a lot of people around them who love them, it’s hard to imagine why they would ever feel sad,” says Tracey. “You do everything to make them happy and you can’t. It’s heartbreaking.”

After developing a depressive disorder on top of her existing anxiety, Sarah remained in therapy despite slow progress, battling her negative thoughts and staying focused on getting better.

“It’s important to remember that people with anxiety and depression are not sad, tired, moody, or uninterested on purpose. These are real, biological diseases,” says Laramee. “Sarah was suffering terribly. She was in a really dark place and could not see the light at all. “Her brain needed recalibrating.”

The number of children and adolescents admitted to children’s hospitals for suicidal thoughts or self-harm has more than doubled in the past decade. At CHKD, three to five children seek crisis care in the emergency department each day for mental health concerns.

Since its inception in 2014, when only six providers offered services at just one location, CHKD’s mental health program has grown to include child psychiatry, two psychologists, three psychiatric nurse practitioners, and 26 licensed clinical social workers and licensed professional counselors, providing care at nine locations throughout the region.

Today, CHKD offers crisis evaluation through the emergency department and outpatient treatment for children, adolescents, young adults, and their families with a wide variety of challenges including depression, anxiety, ADHD, sleep disorders, phobias, eating disorders, and impulse control disorders.

The new, transformational initiative is designed to meet the demand for more of these mental health services. In addition to the inpatient facility, CHKD plans to expand its outpatient care to include a day treatment program, additional clinicians, and more therapy services throughout the region.

When Sarah was at her lowest point, Dr. Peter Dozier, a child psychiatrist at CHKD, joined her team of care providers and prescribed medication to help relieve her stress and decrease the frequency of her panic attacks.

Therapy is at the core of Sarah’s treatment, but adding medication to her therapy regimen gives her the upper hand over her anxiety. “The medicine works behind the scenes for me,” she says, “like a protective shield that makes my condition more manageable.”

For those with anxiety disorders, it’s common to need medication to control panic attacks, says Dr. Dozier. “There are many medications to help manage anxiety, so we had to try on different ones, like finding the best fit in clothing, to determine which would fit Sarah best,” he says. “Dr. Dozier is really good at explaining what the medicine is and making sure my family and I are comfortable with it,” adds Sarah.

If Sarah is struggling with her anxiety and techniques from therapy aren’t helping her cope effectively, Dr. Dozier will review her medication. Together, and in conjunction with Sarah’s medical team, Dr. Dozier and Laramee collaborate on Sarah’s mental health care to create the best and safest treatment plan for her.

“This did not start overnight. It has been growing for years,” says Dr. Dozier. “Now, Sarah isn’t afraid to describe emotions she goes through. She’s involved and motivated. Her anxiety and depression are no longer threats to who she is.”

To address the current barriers to accessing mental health care and the shortage of pediatric psychiatrists in the region, CHKD medical group pediatricians are arming themselves with tools to better assess, identify, and treat children with mental health needs. This includes a partnership with The Resource for Advancing Children’s Health (REACH) Institute, an innovative program designed to train primary care providers in early intervention and effective treatment.

Because seventy-five percent of children facing mental health challenges are first seen in the primary care setting, all CHKD pediatricians evaluate kids for anxiety, depression, and suicidal thoughts or behavior during routine visits. This practice started ahead of the guidelines recently issued by the American Academy of Pediatrics that call for routine depression screening of youth ages 12 and older during primary care or sports physical visits.

CHKD’s mental health program encourages communication and coordination between CHKD pediatricians and subspecialists, and the child psychiatry and psychology departments. CHKD is also developing telemedicine technology that allows the mental health team to provide quick and convenient remote assessments to children in crisis being seen by their primary care physician.
 

By telling her story, Sarah wants to encourage others to speak up about the way they’re feeling and seek help when it comes to their mental health, noting that anxiety is an invisible disease.

“Without CHKD, we might be telling a totally different story today,” says Steve. “I’m excited to see that they’re building an inpatient facility just for kids. Had it been available during Sarah’s depression, we may have tried going that route.”

“Many children in this area have significant levels of depression and are at risk of dying,” says Dr. Dozier. “With CHKD’s mental health initiative, we have the opportunity to provide mental health care to all children – not just those who are in crisis. We can shift that paradigm. And most importantly, we can save lives.”

The new mental health facility with comprehensive inpatient, day treatment, and outpatient programs will be complete in approximately four years and serve 2,100 local children like Sarah every year.

“At CHKD, I received care specifically designed for me, and everybody made sure I was in a safe environment,” says Sarah. “I will always have anxiety, but thanks to my doctors, I know it won’t control me.”

This story appeared in the Fall 2018 edition of Kidstuff magazine, a quarterly publication from CHKD that features inspiring stories about patients, families, physicians and friends of CHKD. Make a donation to receive Kidstuff magazine by mail.