The idea is to go from point A (9th grade) to B (graduating high school). Some do it with a GED. It may take part home schooling, part regular high school, going for two classes in summer – whatever works. If we can help them progress through high school, and separate from mom, they usually function better into the late teens and 20’s. The exception is when the child has a personality disorder. The young patients with a moderate or severe personality disorder often underfunction as an adult.
Many of these kids are somatizers, and visit multiple physicians and other providers. I minimize testing with these patients, and almost never hospitalize them. It is important to move away from the meds and medical establishment, and help the kids see themselves as healthy, not chronically ill.
As with adults, active coping is a key. Pain level itself is the 4th predictor of disability in these kids. Ahead of pain level are: 1. catastrophizing, 2. fear of pain, and 3. passive (vs. active) coping. We can work on “dialing down the volume” on catastrophizing, both in the child and parent. I see “catastrophizing by proxy”, where a parent may say “These headaches are the worst anybody has ever had. They are a 12 on a scale of 1 to 10. It is a nightmare. You need to cure them.” Encouraging active coping is a major challenge. We need to have the parent, teacher, therapist, etc. on the same page. If the parent (and child) state “When you give enough drugs to stop the pain, then he will go back to school,” that never works out well.
My approach has evolved over the years toward a flexible case-by-case approach. I encourage active coping, and always minimize meds. I attempt to work with other providers (“villagers”), particularly psychotherapists. One goal, outside of helping to decrease the pain, is to gently facilitate a separation of adolescent from parent.
Each adolescent with refractory headaches is unique, and requires an individualized approach.