We aim to better understand the natural history of benign paroxysmal torticollis (BPT) through a longitudinal 5-year follow-up study with a cohort of parents/caregivers of children with BPT who previously participated in a study from 2018-2019.

BPT is an episodic syndrome thought to be associated with migraine that presents in early childhood with episodes of head tilt associated with pallor, malaise, vomiting, ataxia, or irritability (ICHD-3). Few prospective studies have explored the natural history of BPT.

Participants were a subset of parents/caregivers of children with a history of BPT who previously participated in a telephone interview during the prior study. Descriptive data are reported.

Twenty-three participants out of the original 73 participants were interviewed. The children’s median current age was 8 years (range 5.5–24). There was a female predominance (n=13; 57%).

BPT episodes had resolved prior to the original study for 48% (n=11). BPT had resolved in the interval between the prior interview and the current interview for 43% (n=10) and remained ongoing for 9% (n=2). Amongst children whose BPT resolved between 2018 and 2024, all reported episodes with stable (n=4, 40%) or shortened (n=6, 60%) duration and stable (n=3, 30%) or decreased (n=7, 70%) frequency around offset. The median age of offset was 30 months (range 11–96).   

Fifty-seven percent (n=13) reported having migraine or abdominal migraine. Almost all had a family history of migraine (n=22, 96%).

Most parents (n=19, 83%) reported concerns about their child’s development. Gross motor delays were most common (n=15, 79%), though the majority of these children appropriately caught up (n=10, 67%).

Most outgrow BPT, and the episodes generally grow shorter and less frequent around offset. Some children may continue to experience BPT well beyond their toddler years. Family history of migraine is common and many children with BPT go on to develop migraine.