At first, Ethan Martinez’s parents thought his persistent high fever was some kind of temporary virus or infection. The doctor thought so too, and prescribed the eight-year-old antibiotics.
But within weeks, the normally easygoing and active child was behaving strangely. Ethan cried while playing baseball, a game he’d always loved. He started getting in trouble at school, and would get suddenly angry for no reason. Early puberty, his doctor suggested.
Then came the seizures. First, Ethan’s legs began to shake uncontrollably. Then his entire body seized. Ethan’s parents, Erin and Gabriel Martinez, rushed him to the emergency room near their home in Perris, in Riverside County, California.
Finally, after several ER visits, he was admitted to Loma Linda University Children’s Hospital near San Bernardino, where he was diagnosed with anti-NMDAR encephalitis, a dangerous autoimmune disease that causes brain swelling. The Martinezes watched their once-healthy son lose his ability to speak, walk, eat, and remember.
Gabriel remembers this time vividly — he drove home sobbing every day from work as a truck driver. “I didn’t know how to handle it,” he said. “I thought, ‘I can’t do nothing to help him out.’”
Having a child with a chronic illness or disability is emotionally devastating for many families. For the Martinezes, Ethan’s illness brought tremendous worry and stress. Erin and Gabriel parents struggled to hold their marriage together as they grappled with the intensity of suddenly caring for a child with special needs. Their younger son, Nathan, who was six, also struggled with the change.
For Ethan, the illness impacted both his physical and mental health. He had to relearn how to walk, eat, and go to the restroom. He still struggles to talk and experiences seizures periodically. The brain swelling he suffered led to long-term developmental delays and behavioral problems, including angry outbursts.
As the situation grew more difficult for the Martinezes, hospital medical staff suggested the family enroll in a therapeutic program called Mastering Each New Direction, or MEND. Run in collaboration with the hospital’s Behavioral Medicine Center, it’s one of the only programs in the state that provides mental health treatment specifically for children with chronic medical conditions and their families.
Children and parents attend the program for three hours, three times a week over about two months. Kids and teens receive group therapy with others in their age group, with their families, and in groups of families. They may also receive individual therapy. The program also teaches parents skills to help them cope with the stress, fear, and guilt that often accompany having a child with a challenging illness.
Research on the program demonstrates its impact. One study of 22 families enrolled in MEND found that participants’ reported health and wellbeing after completing the program increased around 76 percent. Children were less likely to end up back in the hospital, and the number of missed school days dropped from an average of 12 a month to just two.
A later study published in 2016 found that children who completed MEND had lower levels of stress hormones in their bodies, an effect that remained three months after treatment. Screenings revealed that their brain functioning and mental health improved as well.
“Their shoulders change,” said Brian Distelberg, who runs MEND and works as director of research at the Behavioral Medicine Center. “They’re all stressed when they come in. They’re more relaxed and comfortable when they’re leaving.”
Racked with guilt
About a quarter of children in California have a chronic health condition. These include genetic disorders, birth defects, developmental delays, diabetes, and asthma. The rate is even higher among children of color, due to systemic racism that impacts the conditions in which these children live and grow.
Research shows children with chronic illnesses are at least twice as likely as healthy children to develop a mental health disorder. They’re at higher risk for neglect and abuse. Their caregivers and siblings are also at increased risk for mental distress. Yet there are few mental health treatment programs that cater to the needs of these children and their families.
“It’s kind of overlooked,” said Distelberg. “We always think of (these children) as, they have this physical health condition, and we can really get behind that. But oftentimes what comes with that is all these additional stressors for the individual patient as well as the family system. Everything from the stress of just trying to deal with (the illness), to the financial stress that often comes with physical health challenges.”
Children with chronic medical conditions often suffer multiple blows to their mental wellbeing, said Daniel Tapanes, a psychotherapist who designed the MEND program and now helps coordinate it.
Some of the children Tapanes has counseled have expressed feeling like they’re “broken,” a burden on their families, or that they don’t belong because they look different from their peers or can’t participate in activities such as sports, sleepovers, and parties.
Teenagers in particular can struggle as they begin the natural process of becoming more independent. It’s common for teens to stop following their prescribed treatment because they want to feel more “normal.” This can exacerbate their health conditions and pile stress on the family, Distelberg said.
Meanwhile, some parents are racked with guilt and shame over their child’s illness. Erin Martinez, for example, said she would imagine she was somehow to blame for Ethan’s illness because she had enrolled him in too many after-school activities, and she wondered if she could have done more to get him treatment sooner.
It took the Martinez family a couple of tries in the MEND program before they reaped the benefits. Ethan first enrolled at nine years old, and saw some results. But Erin and Gabriel said they were too caught up in their own stress and marital conflict at the time to make the changes required of them to support Ethan.
More results came after Ethan enrolled in MEND again last year at age 15. His struggles had intensified as he entered his teenage years, and tension in the household was unbearable, Erin said.
At MEND, which was held online during the pandemic, the therapist working with Ethan figured out the teenager wanted more time and attention from his mom and dad. She suggested they do more family activities together. One thing Ethan really wanted, she said, was to play catch with his dad.
Gabriel began taking Ethan out to the yard to play ball after dinner. “By the end of the week, his attitude, his aggression had completely changed,” Gabriel said. “I was like, ‘Are you kidding me? Is that it?’”
Meanwhile, Erin realized she needed therapy too. Her own stress, anxiety, and feelings of guilt had become overwhelming. She enrolled in an adult version of the MEND program, where she received therapy to help her learn better coping skills. She and Gabriel also received couples’ therapy as part of the program.
Nathan, 13, enrolled in MEND too. Through therapy, he started to talk about the stress and sadness he’d felt watching his older brother’s health change.
‘It gives me goosebumps’
Altering how family members relate to each other is a big focus of the MEND program, Tapanes said. By changing the family dynamics, children’s mental health usually improves, he added. Since the program launched in 2009, he and Distelberg said they’ve witnessed numerous children become not only mentally healthier but physically healthier too.
Kids with diabetes who entered the program pale and emaciated from not adhering to treatment left with normal weight and blood sugar levels. Some children no longer needed emergency organ transplants after exiting the program because their body could better manage their disease. And one child gravely ill with lupus made a full recovery.
“It gives me goosebumps,” Tapanes said.
MEND staff are now training other providers on how to run similar programs in Lake County in Northern California, and Chicago. The program has also been shown to save money for families and health insurers. One analysis found it reduced spending on direct and indirect medical care by 86 percent. These results highlight the connection between improved mental health and improved physical health. More medical providers and insurance companies need to recognize this link, Distelberg said.
“We can’t continue to treat people as if their physical health is over here, and their mental health is over here,” Distelberg said. “We need to bring those together.”
For the Martinez family, life has improved dramatically. Erin said her sons now play together without getting angry. Nathan talks to his parents about his day and how he’s feeling. Ethan still gets angry and upset at times because of his brain injury and difficulty communicating, but his family has learned what triggers him, and how to redirect his emotions by playing catch or a board game. The mental health treatment has also led to better physical health for Ethan, resulting in fewer hospitalizations.
And Gabriel and Erin have gone from the brink of divorce before joining MEND to talking about renewing their marriage vows, Erin said. “This program saved our family.”
This story was produced in partnership with the California Health Report.