Abstract Details

Title Benign Paroxysmal Torticollis: Phenotype and Patient Perspectives

Topic Headache

Presentation(s) S20 - Headache Imaging and Physiology and Episodic Syndromes Associated with Migraine (4:47 PM-4:58 PM)

Poster/Presentation
Number 008

Background

BPT is recognized in International Classification of Headache Disorders, 3rd edition, as an episodic syndrome that may be associated with migraine. BPT is likely under-recognized and treatment is based on case reports.

Objective

To better define the clinical phenotype, natural history and treatment of Benign Paroxysmal Torticollis (BPT), and to identify affected families’ priorities for future research.

Design/Methods

Parents of children with current or prior BPT completed a telephone interview (n=50). Families were recruited via social media and a tertiary pediatric headache clinic.

Results Median age of children was 3.5 years (0.3-23, SD 5.2) at the time of interview. Mean age of BPT onset was 3.8 months (0.5-20, SD 4.2) with resolution by mean age 37 months (11-96, SD 21). Mean time to diagnosis was 12 months (2-48, SD 8.6). Mean frequency of episodes was every 3.4 weeks at onset (0.5-12, SD 2.3) and every 11.6 weeks prior to resolution (0.5-52, SD 9.6). Mean episode duration was 141 hours (0.02-672, SD 127). Associated symptoms included irritability (84%), ataxia (82%), vomiting (76%), decreased oral intake (70%), pallor (64%), photophobia (64%), movement sensitivity (52%), tortipelvis (42%), phonophobia (28%) and limb dystonia (20%). Concerns about motor development were reported by 74% of parents. Migraine had developed in 16% of the children and other episodic syndromes associated with migraine in 64%. Family history of migraine was present in 94% of families. Acute medications were tried by 60% (37% with reported benefit) and preventives by 12% (33% with reported benefit). Prioritized research areas included natural history (54%), treatment (36%) and improved clinician awareness (36%).

Conclusions

The spectrum of severity of BPT is broad. Though characterized as “benign”, BPT can be associated with motor delay, development of migraine or other episodic syndromes associated with migraine. Families identified natural history, treatment and clinician awareness as top research priorities.

Authors/Disclosures
Kaitlin A. Greene, MD (Oregon Health & Science University) PRESENTER	Dr. Greene has received research support from American Headache Society.
Vivien Lu, MD	No disclosure on file
William F. Qubty, MD	No disclosure on file
	No disclosure on file
Marta San Luciano, MD, FAAN (University of California San Francisco)	Dr. San Luciano has received research support from NIH (NINDS).
Amy Gelfand, MD (UCSF)	Dr. Gelfand has received personal compensation in the range of $50,000-$99,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Headache Society. The institution of an immediate family member of Dr. Gelfand has received research support from Roche/Genentech. The institution of an immediate family member of Dr. Gelfand has received research support from Vigil Neuroscience. The institution of Dr. Gelfand has received research support from UCSF Resource Allocation Program. The institution of an immediate family member of Dr. Gelfand has received research support from NIH/NINDS. The institution of an immediate family member of Dr. Gelfand has received research support from National MS Society. The institution of Dr. Gelfand has received research support from PCORI. Dr. Gelfand has received publishing royalties from a publication relating to health care. An immediate family member of Dr. Gelfand has received publishing royalties from a publication relating to health care. An immediate family member of Dr. Gelfand has received publishing royalties from a publication relating to health care. An immediate family member of Dr. Gelfand has received personal compensation in the range of $50,000-$99,999 for serving as a Expert Witness with United States Department of Health and Human Services, Vaccine Injury Compensation Program. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Headache Cooperative of the Pacific. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Taiwan Headache Society. An immediate family member of Dr. Gelfand has a non-compensated relationship as a Clinical Trial Steering Committee Member with Roche/Genentech that is relevant to AAN interests or activities.

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