The Homebound Adolescent Headache Patient
I have an adolescent headache center north of Chicago. Years ago, I would take a simplistic, tough-love approach: "…My job is to come to work; yours is to go to school, no excuses." I have evolved toward a more nuanced approach, individualized to each child’s situation.
In the case of chronic refractory headache patients, we are not simply treating one child in isolation; we are also dealing with the parents, siblings, and the school. Long-term outcomes with these children somewhat depend upon the psychiatric health of the parent. The primary "caretaker" parent (usually the mother) can range from psychiatrically normal to those with a severe personality disorder (PD). The child’s psychiatric status is also a crucial variable. It "takes a village" to raise some of these children, and we recruit "other villagers." These include psychotherapists, physical therapists, biofeedback specialists, etc.
Role of Therapist Is Key
Adolescent psychotherapists are invaluable in treating these patients. They often provide the most useful treatment for the child. Many therapists will take a family therapy approach. Family dynamics play a crucial role in perpetuating refractory headaches. Also, the patient’s severe headaches adversely affect the rest of the family. Many of the kids are not ready for high school, and have tremendous fears and anxieties. After a number of sessions, the therapist often has a good grasp on why the child has severe headaches, along with school avoidance. For some kids, the long-term relationship with the psychotherapist may be the most important element of treatment.
Mental Health of Parent Is Important
The psychiatric health of the parent (usually mom) is also important. The most difficult case is when the mother has a PD, most often borderline personality disorder (BPD), and the child has a PD. Except in severe cases, we reserve diagnosing an adolescent as having a PD until their later teens or early 20s. With plasticity of the brain, children diagnosed with BPD may significantly improve by age 25 or 30. I have followed a number of patients into their 20s, and when both mother and child are psychiatrically ill, the result is not good. These patients often underfunction as young adults, never leaving home or finishing school.
When mom has a BPD, she may perpetuate a mild factitious disorder by proxy (Munchausen by proxy). I published an article on this situation, where we evolved into taking a dialectical approach with both mom and adolescent.1 Dialectical therapy is used with BPD, and with these mothers I call it "dialectical by proxy." Basically, this means we are nonconfrontational, "go with the flow," trying to minimize medical interventions, and maximize psychotherapy. Confronting the BPD parent leads to an angry scene, with the parent (and child in tow) stomping out of the office, never to be seen again. With the milder approach, I have had several children actually separate from the mother after high school, and do reasonably well. Separation is vital if the child is to mature into a relatively healthy adult.
Ease Into a School Program
Many children need a tough-love approach and must be pushed to go to school. Others do best with home schooling or when homebound, online education, modified school (limited hours in class), or a hybrid. Home-schooled kids may do reasonably well academically, but they risk ending up being socially isolated. Homebound-schooled adolescents often experience severe anxiety, and not attending school may help alleviate their social anxiety. Each child’s needs differ. Not all schools are flexible, and alternative programs may not be available.
When a homebound child returns to school, it is helpful to ease back into school. I will usually write letters recommending late starts, early release, no gym, etc—whatever helps. If the adolescent is at least willing to go back to school part time, I will do my part and help facilitate the return to school. This works for some of the children.
The idea is to go from point A (9th grade) to point B (graduating high school). Some children accomplish this by taking the GED exam. It may take part home schooling, part regular high school, going for two classes in summer—whatever works. If we can help these children progress through high school, and separate them from mom, they usually function better into their late teens and 20s.
Many children with refractory headaches are somatizers—that is, patients with frequent physical complaints for which no organic basis is found. They tend to 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 medications and medical establishment, and help these children see themselves as healthy, not chronically ill.
As with adults, active coping (taking responsibility for one’s illness) is key. Pain level itself is not the only predictor of disability in these children. Other predictors include catastrophizing (thinking illness is worse than it actually is), fear of pain, passive (vs active) coping, depression, and anxiety.2-4 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 have 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 to the refractory headache patient has evolved over the years toward a flexible case-by-case approach. I encourage active coping, and always minimize use of medications. I attempt to work with other health care 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.