Larry Robbins, MD and Alison Alford, MD
Introduction: Which Adolescents Should Be On Homebound?
It is not uncommon for adolescents with severe headaches to be absent from school for long periods of time. Each child is unique, with multiple variables that include: frequency and severity of headaches, response to medication, psychological make-up, history of abuse, resilience and functioning, catastrophizing, stresses and response to stress, family and friends support system, and school support. In addition, family dynamics plays a role. The parents’ psychological condition is also an important factor.
Traditional schooling is not for every child. Many adolescents with chronic headaches function significantly better at home. They do not have to contend with a stressful, noisy, bright environment throughout the day. The goal of finishing high school, one way or another, is sometimes easier through homebound. The downsides of homebound include: the patient is at risk for isolation (as social interactions are limited), and learning high school material can be more challenging at home. The decision to go on homebound is a complex and difficult one. There are some children on homebound that should be in school. Many adolescents require a tough love approach and must be pushed to go to school. Others do best with home schooling, or primarily online education. A modified school program, with very limited hours in school, works for some. In our experience, for most on homebound, it has been the correct decision.
Frequency and Severity of The Headaches
The nature of the headaches is important. NDPH (New Onset Daily Persistent Headache) is often more difficult to treat than is transformed migraine. Pain severity is only one contributing factor towards disability (along with catastrophizing, fear of pain, psychological make-up, resilience, etc). Daily headaches are more likely to lead to homebound than are episodic migraines. Family history may provide clues. If headaches are prevalent on both sides of the family, then it is more likely that frequent or daily headaches will occur in the child. Most homebound adolescents with headaches suffer from chronic migraine.
When the preventive medications are effective, functioning is usually improved. For many with frequent or daily migraines, preventives are not effective over the long-term. They may work reasonably well for 3 to 6 months, but the dropout rate from 6 to 12 months is significant. Side effects often limit use. Even onabotulinum toxin A (Botox) may not provide adequate relief. It helps if abortive medications are effective, but the headache patient cannot “chase” the pain all day, every day.
Choosing medications is highly individualized. Algorithms do not work. We assess previous response and side effects to medications. Family history of medication response is helpful as well. For instance, if mom brings in her daughter, Heather, and we suggest topiramate, mom may say, “Yes, topiramate was a miracle for me!” Topiramate would then be a reasonable medication for Heather, because of genetic response to medications, and also the “placebo by proxy” factor. If the mom says, “No, topiramate was horrible, it almost killed me!” then it would not be a good choice. With that response, we may incur the “nocebo by proxy” response to topiramate.
Weight issues play a role in determining medication choice, as does energy level. Fatigue is often present among those with daily headaches, and we don’t want to exacerbate tiredness with our medication. Comorbidites drive where we go with treatment. Medical comorbidities in adolescents include various GI issues, low blood pressure, tachycardia, asthma, and others. Psychiatric comorbidities help to determine our medication choices. For anxiety and depression, the SNRIs, such as duloxetine or venlafaxine, may help both headaches and moods (assuming mild bipolar is not present). Insomnia is commonly encountered in this population, and the older tricyclics are often helpful. Certain muscle relaxants may improve insomnia and pain. SSRIs may help with moods, but usually are ineffective for headache prevention.
Cost may be an issue with certain medications. For instance, onabotulinum toxin A (Botox) is only officially indicated age 18 and up. However, many adolescents receive Botox (off label) for chronic migraine, but it is costly. Patient preferences play a major role in choosing therapies; many patients (and their parents) want only “natural” treatments, or do not wish to take daily preventives.
Anxiety and/or depression are conditions commonly seen in homebound adolescents. Psychotherapy is our most valuable therapy for many of the patients. Stresses and family dynamics need to be explored. For adolescents with significant depression, the mild end of the bipolar spectrum should be considered. We do not want to prescribe antidepressants prior to assessing for the soft signs of bipolar. Soft signs of bipolarity include: early depression, positive family history, persistent agitation and anger, mild hypomanias, poor or opposite response to antidepressants (and certain other medications), mind racing, hypersomnia (insomnia may occur but is less frequent), and other traits. The family history may include severe depression, hospitalization, mania, opposite reaction to certain drugs (such as antidepressants), and abuse of drugs or alcohol. The quality of the mind racing is helpful to determine. With anxiety, minds will race with worries. The patient in the bipolar spectrum often will simply have racing thoughts, regardless of worry or anxiety. Bipolar I with manic episodes is usually easily diagnosed; it is the softer end of the bipolar spectrum that is frequently missed.
A history of abuse (physical, emotional, or sexual) as a child predisposes to chronic severe pain. A stressful childhood may influence the sensitive, developing brain chemistry. This may also predispose to psychiatric conditions as well.
Personality disorders, or personality disorder characteristics, may be diagnosed prior to age 18. For those diagnosed with personality disorders at age 16, at least 1/3 of the patients will be significantly improved by age 30. Most with personality disorders have a spectrum of traits. These include: splitting and inability to see “greys” (black and white thinking), poor sense of self, abandonment issues, anger, irritability, thin-skinned (families are “walking on eggshells”), impulsivity, self-harm, suicidal thoughts, ultra-rapid cycling of moods, lack of empathy, narcissism, drama, chaos, severe loneliness, constant spending, and other traits. We would only diagnose a probable personality disorder in an adolescent if these behaviors were 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.
Factitious disorders occasionally are encountered among homebound adolescents. True conversion disorder occurs, 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 parents is important. 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) is not actually directly poisoning the adolescent. She will drag the child to various healthcare providers, with a variety of medical complaints, including headache. The parent almost always has a personality disorder, usually borderline. 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 (“factitious disorder imposed on another”) is mild, a non-confrontational “dialectical by proxy” approach sometimes is effective. After high school, if we can achieve a separation of adolescent from parents, headaches and behaviors usually improve. The major problem that occurs is when both the parent and child have a personality disorder. In those situations, the patient is likely to continue living at home in a dysfunctional state, even into adulthood.
Catastrophizing and Acceptance
Catastrophizing is often a major contributor towards disability. We can, as physicians, therapists, and parents, work on “dialing down the catastrophizing dial.” We often see “catastrophizing by proxy,” where the parent makes 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 (vs. active) coping, are also important contributors toward disability.
Acceptance is also an important concept. We try and work towards “acceptance, but not resignation.” Lack of acceptance by the parent (“lack of acceptance by proxy”) is frequently encountered. As with any chronic pain condition, accepting that there is not a miracle “aha moment cure” is important. Lack of acceptance leads to a constant search for the magic cure, and can result in visits to many various types of providers. The road to acceptance may take various pathways. Along with acceptance, we also emphasize that the headaches are very treatable, and may improve or resolve naturally.
Resilience and Coping
Resilience often has an underlying genetic basis. The serotonin transporter gene has 2 “arms,” short or long. Each person has 2 “arms.” Two long arms predicts a tendency towards higher resilience. Two short arms often leads to a lower level of resilience. Tests for long arm-short arm of this gene are commercially available. The genetic basis for resilience has been studied mostly in the setting of moderate to severe childhood stress or abuse. Various psychological conditions also play a major role in resilience. In addition, modeling of resilience (or lack thereof) by the parents is important.
Resilience and coping vary widely among adolescents. One patient may have severe stress at home, severe 24/7 headaches, and never miss a day of school. The next person may have mild pain, and be out of school for years. We don’t want to “punish” adolescents for their lack of resilience or coping. However, improving coping is always a major goal. We usually need to have the patient, physicians, therapists, teachers, and parents all working together. As with adults on disability, improving coping is not easily accomplished.
Active coping is a key, along with improving self-efficacy. We must encourage coping strategies outside of simply taking medication. These include seeing therapists, exercise, meditation, etc.
It Takes A Village
While medications may be important, it’s also important that we take a multidisciplinary approach. Individual psychotherapy is often our most effective tool for helping the adolescent patient. Therapists may help with the usual adolescent stresses, coping, insomnia, and family issues. Parents and siblings are profoundly affected by the adolescent with chronic pain. Family therapy may be beneficial. Not all adolescents, or parents, are ready for psychotherapy. Sometimes it takes repeated efforts to convince the family of the benefits of therapy.
Physical therapists can be helpful with posterior head pain, or with associated neck or back pain. Working on posture, stretching, and exercise is important.
Biofeedback is time intensive and expensive, but may be very helpful. Meditation is easier to learn, and may be more accessible for patients than biofeedback. For the patient with sleep issues, working on “sleep rules” and improving sleep may benefit mood and headache.
We are not simply treating one child in isolation. Along with the family, we are also working with the school. Teachers and school staff are important “villagers” in our multidisciplinary approach.
Returning To School
When a homebound child returns to school, it is helpful to ease back slowly. Late starts, shortened days and no gym(or limited physical activity) may help. Extra time on exams may be appropriate. If the adolescent is at least willing to return to school part time, we will do our part and help to facilitate the return. A 504 medical plan may help. Permission to leave class early may minimize exposure to loud noise. Eating lunch in an alternative location may minimize the loud noises. Some students find sunglasses, usually a mild tint, to be very beneficial. For students on homebound, some communities offer select classes off-site, with a small group of students. This small setting may also work for science lab classes. It may take a combination of home schooling, part time regular high school, and summer classes as well. The primary goal is to achieve a high school degree, either through the local high school, or via the GED.
Our approach with refractory adolescent headache patients has evolved over time. While the “tough love” approach is best for a minority of patients, many adolescents do well with partial or full homebound programs. It “takes a village,” and we favor a multidisciplinary approach. Once high school is finished, most adolescent headache patients improve and do fairly well.
Author’s Bio: Lawrence Robbins, M.D. is the author of 5 headache books. The latest is “Advanced Headache Therapy.” He has had 320 articles/abstracts published. Dr. Robbins is in private headache practice in Riverwoods, Ill. Web: Chicagoheadacheclinic.com
Alison Alford, M.D. is a board certified pediatric headache specialist in Richmond, VA. She has co-authored a chapter in Pediatric Epilepsy (subject=felbamate) by Pellock, et al. Dr. Alford is in private practice at the Pediatric Headache Center of Richmond. Pediatricheadachecenter.com
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