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

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.

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.

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 personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for American Headache Society. An immediate family member of Dr. Greene has or had stock in Auxetics. The institution of Dr. Greene has received research support from Eli-Lilly. The institution of Dr. Greene has received research support from Upsher-Smith. The institution of Dr. Greene has received research support from Amgen.
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). Dr. San Luciano has received research support from Raynor Cerebellum Project.
Amy Gelfand, MD (UCSF)	An immediate family member of Dr. Gelfand has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Arialys. 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. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for AAN. The institution of an immediate family member of Dr. Gelfand has received research support from Hoffman LaRoche. The institution of an immediate family member of Dr. Gelfand has received research support from Vigil Neuroscience. The institution of an immediate family member of Dr. Gelfand has received research support from NIH/NINDS. The institution of Dr. Gelfand has received research support from PCORI. The institution of Dr. Gelfand has received research support from UCSF RAP grant. 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. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Weill Cornell Neurology Department. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Taiwan Headache Society. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Author with Elsevier. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Speaker with College Board SSD. Dr. Gelfand has received personal compensation in the range of $0-$499 for serving as a Speaker with Kobenhavns Unversitet. 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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