Children with chronic medical conditions often suffer multiple blows to their mental well-being. A state program in California aims to provide appropriate treatment for these children and their families.
Oct 7, 2021
At first, Ethan Martinezes’ parents thought his persistent high fever was some kind of temporary virus or infection. The doctor thought so, too, and prescribed antibiotics for the 8-year-old.
But within weeks, the normally easygoing and active child was behaving strangely. Ethan cried while playing baseball, a game he’d always loved, 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 would start shaking 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.
Every day on his way home from work as a truck driver, Gabriel Martinez, would sob.
“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. The 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 6, also struggled with the change.
And for Ethan, the illness affected 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 has seizures. The brain swelling led to long-term developmental delays and behavioral problems, including angry outbursts.
Then 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 few state programs providing mental health …….