For families

Having a visit with your child with headaches can be daunting. On the one hand, you see your child suffering with pain. Will the provider listen? Will she make the right diagnosis? Will she offer help that is concordant with your views?

Most probably you will start out with your primary care provider. Hopefully, she will have gotten to know both you and your youngster. Introductions may not be necessary. The purpose of this visit is to arrive at the right diagnosis, come up with a doable plan and figure out if more work up or the expertise of a specialist is necessary.

She will start out with simple questions to determine pattern, severity, family history, and impact on your child’s life. She may interview your child alone, if time permits.

The hidden agendas must be addressed. You probably know of a family member or friend who had a brain tumor. If the story and exam are reassuring, you want confident reassurance that migraine or tension headache is the issue, and not brain tumor.

After careful assessment, the primary care practitioner should give you an action plan including rescue medicine and nonmedication treatments, and instructions about when to get in contact. If the problem is beyond the practice’s ability, referral to a specialist should be expected. Some primary care doctors are better at headache than others, and some have good community resources while others are more on their own.

If one sees the specialist, there are some subtle differences. Of course, this person does not know you or your family. She must gather information from the start including getting an idea about coping skills and your preferences. Similar to the primary care doctor, she must get a careful history, dig deep into what has been tried and come to a diagnosis and a treatment plan. She is a headache expert with knowledge of the latest advances in headache treatment. She may have handouts or websites to enhance education. She has experience with addressing school issues and accommodations. You should leave the office with a lot of information, various plans for rescue, and an approach that includes the school and the family as well as addressing the youngsters’ needs.

In summary, one should expect similar but different outcomes from your primary care and specialist. For both you should expect good listening skills, and a plan that includes your child’s and your family needs and wishes. You will know by the end of the session whether those needs were met. The primary care doctor can often be the last stop if the problem is simple or the practitioner knows headache well. If referral is needed, it may take longer to establish trust, but the expertise acquired should help you get your child what she needs.

For primary care clinicians

In a busy office setting the most common feeling for a primary care provider who sees a patient with a chief complaint of headache is helplessness. How can I gather the information needed to help this family in such a short time? Will I overlook the patient with brain tumor? How can I find out what is wrong, assess disability, and reassure this family in a 15 or 30 minute’s visit?

We feel that this all can be done with alacrity and skill. To make the diagnosis focus on pattern. Is the headache continuous or intermittent? If intermittent, are there autonomic symptoms? Most patients will fit into this pattern. If there are autonomic symptoms like nausea, vomiting, light or sound sensitivity, and there are days of normal function in between headache days, rest assured that the diagnosis is most likely migraine. To cement the diagnosis, a family history of headache with need to rest, will be helpful. Often these youngsters have car sickness. Please remember that the younger the child at initial presentation, the less likely she will have a classic presentation. In the little ones, it is ok to ask them to draw a picture of what they feel like when having a headache. Also, ask the parent it they can tell just by looking that the child has a headache. A migraine is a bad headache, where it is hard to exercise or read. On the other hand, further work up may be indicated if the child reports other systematic symptoms that point to a serious infection or inflammatory condition, sudden onset of the headache like a thunderclap, neurologic signs/symptoms like seizure, daily or continuous headache, headache waking the child from sleep or occurring first thing in the morning, headache frequency or severity becoming progressively worse over time, positional headache, headache triggered by valsalva, a lack of family history of headache, or very young age, That workup could include labs, imaging (usually MRI), referral, or other tests depending on the circumstances.

Once a diagnosis of migraine is established by pattern and autonomic symptoms in just a few short moments, next we assess disability as measured in days of school and work missed. For those parents who must send even sick children to school, we can ask about disability as measured by number of days when their child goes to school but keeps her head on the desk and can’t learn. The more the disability, the more intense the intervention.

Physical examination and neurologic examination in the primary care office tends to be perfunctory, but should be attempted to reassure parents who are worried about brain tumor. The presence of new abnormalities on exam or papilledema should prompt imaging. One approach is to pause after the history and reassure if the pattern and symptoms are consistent with migraine. Then reassure again after your physical exam, then reassure during the wrap up portion.

For youngsters with migraine, the primary care practitioner can suggest healthy habits, early intervention, and involvement of school staff and initiation of prevention medication (if comfortable). Healthy habits include regular sleep, exercise, meals, and water. Early intervention with acute medications (as covered later) will need the youngster to recognize early warning signs and first twinges. She will also need the help of the teacher and school nurse in getting medicine immediately. Some physicians will initiate a prevention medication but will have to get into comorbidities to pick the right one. Many will refer if disability causes significant school absence or drop in school performance.

Parents will consider their visit to the primary care doctor to be a good one if they were listened to, reassured, and offered a starting plan with good follow up. Referral to a specialist should be considered if diagnosis is not clear and there is concern for tumor, disability is significant, or the patient is refractory to your interventions.

For specialists

Parents and youngsters expect more from the specialist. Time for a new visit is not infinite, and there is no previous history with the family. Their level of worry, social issues, and ways of dealing with pain need to be assessed quickly and thoughtfully. Diagnoses may be rare or complicated with other concomitant illnesses. Comorbid conditions may crop up and make treatment options more complicated. Other attempts at treatment by competent professionals may not have worked optimally.

The specialist visit starts with a recap of records sent to make sure that there are no other outstanding documents. It should quickly move to making sure that the right diagnosis has been established. Often, that means asking the family to start from the beginning in their own words. Even if the specialist has pored over previous documents, this gives the parents and the youngster the feeling that they will be heard. It gives the specialist a chance to see how the parent and youngster interact, affording valuable information about their level of understanding and family dynamics. If the patient is a teenager, letting him/her take the reins here is crucial. Disability assessment and coping skills along with comorbidities must be addressed and confirmed.

If migraine is the diagnosis but treatment needs to be tweaked, the headache specialist is uniquely equipped to optimize old remedies and teach about exciting new therapies. The backbone still lies with reinforcing healthy habits, treating migraines at first twinge and offering prevention strategies based upon coping skills and disability. Proper use of medications need to be stressed and employment of prevention medications may be prescribed. Thorough knowledge of community resources for complementary medicine is a must. Developing an action plan together with the family that incorporates baseline activities (green zone), initial treatment (yellow zone) and rescue treatment (red zone) should be accomplished towards the end of the visit. Websites and additional reading material can be presented as a take home assignment.

If the diagnosis is chronic daily headache, more focus needs to be spent on the psychosocial aspects of the visits. Questions like “Who lives at home, how does everyone get along, how do you cope, are you being bullied, do you have trouble learning, Is anyone making you uncomfortable” need to be asked along with all the myriad of other questions. Co-morbidities that need inquiry include insomnia, depressed mood, anxiety, dizziness, freezing cold extremities. Again, involvement of community colleagues may be helpful in building a toolbox that may include counseling, yoga, CBT, acupuncture, and massage. Psychiatry, Cardiology, and Gastroenterology colleagues may need to help build a plan to address the comorbidities. If there are migraine spikes along with the Chronic Headache, a migraine action plan will need to be incorporated into the plan.

For rare diagnoses the headache specialist may alleviate suffering by coming up with a proper diagnosis and treatment plan. The Trigeminal Autonomic Cephalgias come to mind where introduction of Indomethacin may take the pain away that may have been present for years.

For the specialist, follow up with the youngster and family is crucial. The first visit is an initial attempt to diagnose, assess, and make a plan. It is during subsequent interactions that the plan is incrementally changed to accommodate side effects, work on adherence, and make sure that all members of the team have been informed and have had a chance to contribute to the plan. Build your after visit summary together, to make sure everyone understood.

Barriers to effective headache visits

Since the initial draft of this chapter, the world has been turned upside down by three interrelated societal issues. Covid-19, unemployment, and a heightened focus on racial inequality have brought new layers of complexity to all our interactions whether they be in the clinic or in our delay dealings with one another. Our new viral menace has made it difficult to have reasonable patient visits, while we have all learned to use telemedicine as a second best option. On the other hand, telemedicine has offered accessibility and the opportunity to see patients more often and at off-hours. In our experience, first visits are better done in person, so a full physical examination can include a look at the optic discs. For follow up visits, however, incremental changes don’t always require an ophthalmoscope.

Unemployment is at a 100 year high in the US. Many of our patients have lost health insurance when their parent has lost a job. Aside from the sudden inability to afford visits or medication, sudden joblessness may lead to depression, anxiety, and food insecurity.

Finally, a focus on race inequality may highlight barriers that were not discussed previously. Health care providers, like all others, must come to grip with their own biases and consider whether their unconscious attitudes may intrude into patient care. Since this is a subject which is no longer a taboo for discussion, we must figure out how to bring this subject into our conversations at the bedside and in clinic.