There comes a time, in any primary care pediatrician’s office, when a patient is in need of a higher or more intense level of care. For most patients with headaches, their care can be managed effectively by their primary care team. Their presentation and history are straightforward, they respond to the usual rescue medications, and there is a good understanding of the lifestyle habits that are needed to maintain healthy headache lifestyle.
But there are times when a referral is needed to better care for the patient. There are several reasons why patients and families would/should be referred to a pediatric headache center:
- The diagnosis is still unclear and you have already ruled out any serious secondary headache causes.
- The patient continues to have frequent headache, despite appropriate medication trials and lifestyle modifications;
- The patient is becoming disabled, not going to school or desired activities, socially isolating, and family life is disrupted.
- The family requests a referral to a specialist to better understand what is happening.
The most important benefit of referral is the opportunity to intervene to avoid transformation into a chronic pattern of disability and dysfunction. It is difficult to recover from chronic headaches, and there can be lifelong negative impact on the health and well-being of the patient. We are becoming more aware of the benefits of avoiding chronicity within the pain/headache pathways in the nervous system, and feel the sooner the chronic pattern can be broken, the better the overall outcome.
What are the chronic headaches?
- Chronic migraine
- Chronic tension-type headache
- Chronic mixed or chronic daily headache, a mixture of tension-type and migraine headaches (fairly common presentation in children/teens)
- Chronicity for these 3 types of headache is defined as having a frequency of 15 days/month or more and ongoing for at least 3 months.
- New Daily Persistent Headache, defined as constant, unrelenting headache that develops rapidly, and continuously from day of onset for at least 3 months.
What happens when you refer someone to a dedicated pediatric headache program?
Multidisciplinary headache programs are usually staffed by a neurologist, or pain specialist, a pain psychologist, and NPs and/or nurses. Not every neurologist is interested in caring for kids with headaches but pediatric headache programs can be found all across the country. Pediatric headache programs are most often found within a university teaching hospital setting. Some are found within neurology or within a pain (anesthesia) program; headache is often viewed as a ‘pain condition’.
When patients are referred to our headache program, the initial evaluation is done by the pain/neurologist and a pain psychologist. There are some up front data collection, including psychological measures, prior to the visit. Their medical records are also reviewed. The families see the neurologist first for full history and physical, and then they are seen by the pain psychologist- patient and parents, separately and together. Then a plan is formulated and reviewed with the family by one of the clinic’s nurse practitioners. The plan is usually a combination of medications, lifestyle measures, complementary therapies and often a recommendation for psychology for cognitive behavioral therapy (CBT) and/or physical therapy. There may be a recommendation for hospital stay for DHE infusion, an injection procedure, or an MRI. There is follow up scheduled as well, if appropriate (if not too long distance).
The overriding message to the patients and families is that chronic headache is a condition that responds best to a multidisciplinary approach. Each part of the plan is important. Recovery requires time, attention, and intention. Each family is different and their expectations and culture vary widely. Some families are more than happy to change medications, start supplements, engage in PT for head and neck stretching and strengthening. Some may just rather focus on lifestyle measures, like working on hydration and sleep. Some families may need an MRI scan to feel reassured, or lab work.
One of the hardest things to promote is psychology and CBT. Sometimes the family is well aware of mental health concerns, confirmed with meeting with our psychologist. They are open to the idea and welcome suggestions for where to seek counseling. Unfortunately, there are many families who reject the idea that psychological counselling would be beneficial. Learning to identify stressors and effective coping skills is a key and valuable part of any headache management, especially chronic headache.
What is the PCP role?
Primary care providers are a trusted resource for most families. The fact that the PCP identified a resource, referred them to another provider to better manage their child’s headache, and took their concerns seriously is important.
From the headache clinic’s point of view, the PCP is an important partner in managing the patient’s health and the family’s concerns and expectations. We view that partnership as incredibly valuable for help with encouraging follow through, reinforcement of recommendations and trouble-shooting any other problems. Successful outcomes happen when there is good communication and support going both ways in the relationship.
Primary care providers should not hesitate to contact your local headache program with any questions about whether a patient is appropriate to refer, and for any updates on your mutual patients. We always welcome it.