The Homebound Adolescent: Managing Chronic Pain Conditions in the Pediatric Population
It is not uncommon for adolescents with chronic pain conditions to be absent from school for long periods of time. In many cases, families may seek out a home-schooling program, or a modified school schedule in which the child is in school for limited hours during the day. This decision-making process is often complex and difficult, and in many cases, parents/guardians will ask for the physician’s input. Herein, the authors present a sample case in which an adolescent presents with refractory chronic migraine and comorbidities.
Hypothetical Case
Emily is 15 years old, with a history of moderate to severe daily migraine since age 13. With her daily headaches, Emily experiences severe photophobia and mild sonophobia. She also suffers from moderate generalized anxiety, dysthymia, moderate insomnia, and irritable bowel syndrome, with reflux and constipation. In the past year, she has missed many days of school.
Emily has been to multiple physicians and trialed multiple preventive medications, but her migraine symptoms have failed to improve. Onabotulinum toxin A (Botox) has improved her headaches to a small degree and abortives help, but only relieve 30% of the pain.
She struggles in school due to the bright lights and noises, which exacerbate her pain, and has difficulty functioning before 11 am. Physical therapy has not been successful. In conjunction with her family and her psychotherapist, she has decided to consider homebound education.
Discussion
Much like adults, each child’s experience with chronic headache or chronic migraine is unique. Variables may include: frequency and severity of headaches; response to medication (including family history response); psychological makeup; history of abuse; stress levels and responses to stress; family/home dynamics; catastrophizing; coping ability; and available support systems.
For the adolescent with chronic headache, function is often significantly better at home as they do not have to contend with a stressful, noisy, bright environment throughout the day. In looking at the larger adolescent patient base, it is important to consider the following when providing clinical advice regarding a homebound program. Chronic headache/migraine is used as an example.
Frequency and Severity of Symptoms
The nature of the adolescent patient’s headaches is important as New Onset Daily Persistent Headache (NDPH) is often more difficult to treat, and more likely to lead to a homebound situation than transformed migraine or episodic migraine. Family history may provide clues. If headaches are prevalent on both sides of the family, for instance, then it is more likely that frequent or daily headaches will occur in the child.
Medication Options
When preventive medications are effective at treating chronic headache, daily functioning is usually improved. For those who experience frequent or daily migraine, however, preventives may not be effective in the long-term. Preventives tend to work reasonably well for 3 to 6 months, but the dropout rate from 6 to 12 months is significant. Side effects may also limit use.
In the authors’ clinical experience, Botox is most helpful if abortive medications are also effective. At the same time, a headache patient, especially a young one, cannot feasibly “chase” the pain all day, every day. Thus, medication selection must be highly individualized.
Rather than using traditional algorithms, the authors have found that assessing previous response and side effects to medications, along with a family history of medication response, are most helpful. For instance, if a mother brings in her daughter, and the clinician suggests topiramate, and the mother says, “Yes, topiramate was a miracle for me!” we then know that topiramate may be a reasonable medication for the daughter. Not only may the genetic response to medications be similar but in this case, a “placebo by proxy” factor may come into play.
Weight and energy level also play a role in determining medication choice. Fatigue is often present in patients who experience daily headaches; thus, medications that exacerbate drowsiness should be avoided.
Medical comorbidities in adolescents with chronic headache or migraine may range from gastrointestinal issues and low blood pressure to tachycardia, asthma, and more. These, along with any psychiatric comorbidities (see below), should be factored into medication choices. For anxiety and depression, in particular, serotonin and norepinephrine reuptake inhibitors (SNRIs), such as duloxetine or venlafaxine, may help to manage both headaches and moods (assuming mild bipolar is not present).
Insomnia is also commonly encountered in the adolescent population and the older tricyclics may be helpful in these cases. Certain muscle relaxants may improve insomnia as well as pain. Selective serotonin reuptake inhibitors (SSRIs) may help with moods, but usually are ineffective for headache prevention.
Finally, cost may be an issue with certain medications. For instance, Botox is indicated for those age 18 and older. Many adolescents receive Botox off-label to treat chronic migraine, but it is costly as a result. Thus, patient preference should be addressed.
Psychological Conditions
Anxiety and/or depression are commonly seen in homebound adolescents with chronic headache. In the authors’ experience, referred psychotherapy is very beneficial to the chronic headache or chronic migraine patient in order to explore any related stresses and family dynamics. For adolescents with significant depression, the mild end of the bipolar spectrum may also be considered. (It is important not to prescribe antidepressants prior to assessing for the soft signs of bipolar disorder, which can be easily overlooked.)
The adolescent’s family history, including any present mental health conditions or substance use disorders, is particularly important as the home environment may lead to increased levels of anxiety and depression.
As reported in the literature, a history of abuse (whether physical, emotional, or sexual) may predispose a child to chronic severe pain and a stressful childhood may influence the sensitive, developing brain chemistry. Such an environment may also predispose a child to psychiatric conditions. In rare cases, factitious disorders may be present in the homebound adolescent, including those in which the condition is imposed on the child by the parent/guardian. Psychiatric referrals may be helpful in these cases but also have potential for causing the patient/family to not return to the practice for care. In our clinics, we have seen headaches improve after the child graduates high school and is living more independently.
Personality disorders, or personality disorder characteristics, should also be considered as these disorders may be diagnosed prior to age 18. Individuals with personality disorders may have a spectrum of traits that may include: splitting and inability to see “greys” (black and white thinking); poor sense of self; abandonment issues; anger or irritability; thin-skinned (families are “walking on eggshells”); impulsivity; self-harm or suicidal thoughts; ultra-rapid cycling of moods; lack of empathy; narcissism; severe loneliness; constant spending; and other traits. In the authors’ experience, a probable personality disorder may be considered in an adolescent if these behaviors are moderate to severe, persistent, and pervasive. Certainly, many of these personality traits coincide with typical adolescent behaviors, but it is the severity and persistence of the behaviors that raises the possibility of a personality disorder.
True conversion disorder may occur, but is rare. Neurologic symptoms may take various forms, such as: headache, weakness or paralysis, non-epileptic seizures, motor tics, and tremors.
The psychiatric health of the adolescent’s parents is important as well. In the authors’ experience, the most difficult situations occur when a parent has a personality disorder. Mild factitious disorder by proxy (“factitious disorder imposed on another”) is occasionally present. With the mild form, the parent (usually the mother) may drag the child to various healthcare providers, with a variety of medical complaints, including headache. When confronted by the physician, the parent (and adolescent in tow) usually flees the office, never to be seen again. When the factitious disorder by proxy is mild, a non-confrontational “dialectical by proxy” approach may be effective. In these cases, if the adolescent is separated from parents after high school, headaches and behaviors may improve.
From Catastrophizing to Coping
Catastrophizing can be a major contributor toward disability and daily function in chronic headache patients, no matter the age. Physicians, as well as therapists and family members, can help to dial down such feelings over time. It is important, however, to also acknowledge the role of the parent/guardian in catastrophizing. For instance, the authors have heard parents make statements such as: “My child has severe daily headaches. Nobody has pain like this. He can’t possibly go on like this.” Fear of pain and passive (versus active) coping, can be key contributors toward disability.
Working toward “acceptance, but not resignation” may be helpful in this regard. As with any chronic pain condition, accepting that there is not a miracle is part of the pain management and rehabilitation process. While each case is different, when treating adolescents, clinicians may wish to point out that chronic headaches may improve or resolve naturally over time.
Resilience may also come into play. The genetic basis for resilience has been studied mostly in the setting of moderate to severe childhood stress or abuse. The serotonin transporter (SERT or 5-HTT) gene has two “arms,” so to speak, which may be short or long. Two long arms predict a tendency toward higher resilience, while two short arms often lead to a lower level of resilience. Tests for long arm/short arm are commercially available. Beyond genes, various psychological conditions may play a major role in a patient’s resilience. Rather than “punish” adolescents for their lack of resilience or coping skills, it is important to provide coping skills. Modeling of resilience by the parents is worth recommending as is a support team, which may include the patient, physicians, therapists, teachers, and parents all working together.
In fact, individual psychotherapy – and family psychotherapy – may be one of the most effective tools for helping the adolescent patient with chronic pain to manage stresses, coping, insomnia, and any family issues. Since parents/guardians and siblings are also likely profoundly affected by the adolescent with chronic pain, family therapy may prove to be beneficial as well. However, not all adolescents, or families, are ready for psychotherapy; it may take repeated efforts to convince them of its benefits.
Additional Nonpharmacological Approaches
While medications are important, it is also necessary to take a multidisciplinary approach when treating the adolescent patient with chronic headache and comorbidities. In addition to psychotherapy, as discussed above, physical therapists may help to manage posterior head pain, or associated neck or back pain by working with the patient on posture, stretching, and exercise. Biofeedback may be very helpful as well, but if it is deemed as too time-consuming or expensive, meditation may offer a more accessible option. For the patient with sleep issues, working on “sleep rules” may positively impact mood and headache frequency/severity.
The Return To School
When a homebound adolescent returns to school, it is advised that they ease back to their daily routine slowly. Clinicians can help to facilitate the transition with a 504 medical plan. This plan may call for late starts, shortened days, excusal from gym class (or limited physical activity), extra time on exams if appropriate, and permission to step out of class if loud noise exposure becomes a problem. Eating lunch in an alternative, quieter location and wearing sunglasses, usually a mild tint, may also be beneficial.
For students who wish to pursue a part-time schedule (such as half in school and half homebound), some communities offer select classes off-site or summer classes, with a smaller group of students.
Conclusion
Overall, when helping to manage an adolescent with a chronic pain condition, such as daily headache or migraine, a multidisciplinary approach that includes medication management and psychotherapy may be most effective as the family works through the process of homeschooling or a modified schooling schedule. Helping to ease a child’s transition back to school should be considered part of the treatment plan. Once high school is finished, many adolescent headache patients may find that their symptoms improve.
See also our 2018 ACR/ARHP meeting highlight, “Addressing Arthralgia in Children”
