How does the diagnosis of paroxysmal hemicrania affect your child’s treatment?

Headache treatment requires an accurate diagnosis. Sometimes getting a correct diagnosis, particularly with children, can take years of doctors visits, disappointment and frustration. What’s additionally frustrating is that there are multiple types of headache disorders that can plague your little one. Paroxysmal hemicrania (PH) is one of these diseases.

PH is defined by short episodes of severe pain on one side of the head. Episodes of PH range anywhere from 5 to 40 times a day and attacks last for 2 to 30 minutes each. Symptoms include red or teary eyes, runny or stuffy nose and sweating or flushing on the same side of the headache. PH is approximately 100 times less common than migraine. While it has been well studied in adults, it is far less understood in children. As researchers continue to work on developing our understanding of various headache diseases, a recent study on PH sought to understand the disease in children.

Researchers pulled data from several studies to determine if PH in children and adolescents follows the same pattern as in adults. They also looked at factors that may cause a delayed diagnosis of the disease. Read more below to learn what researchers found about PH in children.

Findings from the study

The study collected data from 35 cases that had specific symptoms of PH. There was no family history of PH for any of the children. These children reported experiencing migraine-like symptoms like nausea and sensitivity to sounds, light and smells.

Researchers found that a correct diagnosis was often delayed by 1.5 years. This is because of the rarity of PH and the lack of awareness of PH. Diagnosis delays could create difficulties for children and adolescents throughout their development.

“You only go through childhood once,” said Dr. Rashmi Halker Singh, a neurologist at Mayo Clinic and member of the American Migraine Foundation’s (AMF) Editorial Board. “If you delay diagnosing someone and getting them on appropriate treatment, that can have a significant impact on their overall life.”

Indomethacin, a nonsteroidal anti-inflammatory drug (NSAID), can only be obtained through prescriptions. It has been found to stop PH attacks completely. But, the safety of indomethacin for patients 14 years and younger hasn’t been established. More research is needed to determine the minimum age for patients to take indomethacin.

Advocating for Your Child with a Rare Disease

Due to how rare PH is in general and in children especially, many pediatricians are not aware of it and do not diagnose it on time. A delayed diagnosis can severely disrupt a child’s development during a critical period of their life. “We definitely need more work in better understanding migraine, both from a diagnostic and treatment standpoint,” says Dr. Halker Singh. “But we also need to understand that children and adolescents can experience other headache conditions, too.”

Migraine and other headache disorders can be overwhelming and confusing for children. If you care for a child you suspect has PH, keep a record of every symptom. Inform their pediatrician of these symptoms. Ask if PH could be a possible reason behind your child’s symptoms. If the pediatrician is unaware of this disorder, ask for a referral to a pediatric headache specialist. Advocating for your child is the key to ensuring they get the care they need and deserve.

AMF is dedicated to ensuring every individual who lives with migraine has access to resources and care, including parents and children. We aim to make the world a better place for those who live with these debilitating diseases and educate others about the impact they have.

To read the full study, click here.

The American Migraine Foundation has an extensive collection of information on cluster headache and other disorders that cause severe headache in our resource library. Use our Find a Doctor tool to locate a headache specialist in your area, and discover your support community by joining the Move Against Migraine Facebook Group.