KidsMD Health Topics

Torticollis

  • Overview

    Robert R. Wolff, MD, Pediatric Neurologist, Boston Children's Hospital

    Unlike many health conditions that develop silently inside the body, pediatric torticollis is easy to see from the outside. You can recognize it when your child’s head persistently tilts to one side. 

    The word “torticollis” itself comes from two Latin root words, “tortus” and “collum,” that together mean “twisted neck.” This condition, sometimes called wryneck, is relatively common in children.

    In general, torticollis is classified as either congenital (present at birth) or acquired (occurring later in infancy or childhood). By far the most common type is congenital muscular torticollis. Although children have this when they are born, parents may not notice it until children are several weeks old, as they start to gain more control of their head movement. 

    • Congenital muscular torticollis responds very well to physical therapy, especially when it’s started early. Sometimes it is associated with plagiocephaly, a common and treatable condition in which there is asymmetry in the shape of the head and face. This happens because the forces of gravity pull unevenly on a baby’s tilted head, causing a flattened appearance on one side of the skull or face.
    • Acquired torticollis typically occurs in the first 4 to 6 months of childhood or later. It may come on quickly or slowly. In contrast to congenital muscular torticollis, there is usually no facial asymmetry with acquired torticollis. 
    • Acquired torticollis can be benign (not serious) or a sign of more serious health issues. Because the causes can be so different, it is very important to act quickly so that your child can get the proper care and treatment. 

    Note: Pediatric torticollis is different from another condition, called spasmodic torticollis, that affects adults.

    How Children’s Hospital Boston approaches torticollis

    We at Children’s are dedicated to acting quickly to find out the root cause of torticollis and coming up with a treatment approach that’s customized for your child. 

    In most cases, our clinicians deal with congenital muscular torticollis. We’ve found that most children with this type of torticollis respond very well to physical therapy programs, usually within a matter of months. Our dedicated team of physical therapists will provide an exercise plan that actively involves you in your child’s care. 

    We’ll also provide treatment plans designed for children who do not respond to physical therapy. Our orthopedic, neurosurgical and plastic surgery experts work closely together to develop a customized treatment approach that meets all of your child’s health needs. 

    Torticollis: Reviewed by Robert R. Wolff, MD
    © Children’s Hospital Boston; posted in 2012

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    Boston Children's Hospital 
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  • In-Depth


    Causes 

    Because there are different types of torticollis, it is important to know the root cause so that your child can get the proper care and treatment as quickly as possible. 

    Causes of congenital muscular torticollis

    For children with congenital muscular torticollis, the most common form of pediatric torticollis, the sternocleidomastoid (SCM) muscle becomes shortened and contracted. The SCM muscle runs along each side of the neck and controls how the head moves — side to side, and up and down. 

    There are a few common reasons why the SCM muscle may have become contracted and cause your child’s head to tilt to one side: 

    • The way your baby was positioned in the womb before birth
    • Abnormal development of the SCM muscle
    • Trauma or damage to the muscle during birth 

    In far less common cases, congenital muscular torticollis may occur as a symptom of other underlying conditions, including: 

    • congenital bony abnormalities of the upper cervical spine, with subluxation (abnormal rotation) of the C1 vertebrae over the C2 vertebrae in the cervical spine (the part of the spine that encompasses the neck).
    • congenital bony abnormalities of the upper cervical spine, which are most often associated with other congenital skeletal anomalies, such as:
    • shortened neck
    • short limbs (arms and legs)
    • dwarfism
    • congenital webs of skin running along the side of the neck
    • Klippel-Feil syndrome, a rare birth defect that causes some of the neck vertebrae to fuse together
    • achondroplasia, a bone growth disorder
    • multiple epiphyseal dysplasia, a disease that affects the development of bone and cartilage in the long bones of the arms and legs
    • Morquio’s syndrome, an inherited metabolic disorder that prevents the body from breaking down sugar molecules 

    Causes of acquired torticollis

    For children who have acquired torticollis, the causes vary widely and range in severity from benign (not serious) to very serious. Some causes of acquired torticollis include: 

    • a mild (usually viral) infection
    • minor trauma to the head and neck
    • gastroesophageal reflux (GERD)
    • respiratory and soft-tissue infections of the neck
    • abnormalities in the cervical spine (such as atlantoaxial subluxation)
    • vision problems (called ocular torticollis)
    • abnormal reaction to certain medications (called a dystonic reaction)
    • spasmus nutans (a usually benign condition that causes head bobbing along with uncontrolled eye movements)
    • Sandifer syndrome (a rare condition combining gastroesophageal reflux with spasms in the neck)


    Symptoms 

    Symptoms of congenital muscular torticollis

    • The child has a limited range of motion in the head and neck.
    • The head tilts to one side while the chin tilts to the other.
    • A small, pea-sized lump (or “pseudo tumor”) is sometimes found on the sternocleidomastoid (SCM) muscle.
    • Asymmetries of the head and face, indicating plagiocephaly, may also be present.
    • Musculoskeletal problems, such as hip dysplasia, are sometimes present. 

    Symptoms of acquired torticollis

    • There is limited range of motion in the head and neck.
    • The head tilts to one side while the chin tilts to the other.
    • With a condition called benign paroxysmal torticollis, there may be recurrent episodes, or “attacks,” of head tilting; often these attacks are accompanied by other symptoms, such as vomiting, irritability and/or drowsiness.
    • Additional symptoms vary according to the cause of the torticollis. 

    Note: Children who develop torticollis that is associated with neck pain after trauma (even minor trauma) should be evaluated right away to make sure they do not have any  subluxation of the C1 or C2 vertebrae.

    In addition, children who develop painful torticollis at the same time as a fever that is caused by an infection in the pharynx (cavity behind the nose, mouth and larynx) or retropharyngeal space (the area behind the pharynx) need to see a doctor immediately. If left untreated, these complications can lead to a rare disorder called Grisel’s syndrome.


    FAQ 

    Q: How common is congenital muscular torticollis?

    A: It is fairly common, occurring in about 1 in 300 births. 

    Q: Lately I’ve noticed that my infant daughter does not hold her head straight and lets it lean to one side. What should I do?

    A: It is important to bring your daughter to the doctor for a physical exam. 

    Q: My child has congenital muscular torticollis. What can I do help stretch her sternocleidomastoid (SCM) muscle?

    A: Your child’s physical therapist will teach you certain exercises to do at home that will manually and passively stretch the SCM muscle. These exercises are usually very effective, especially when started as soon as possible. 

    Q: How long will it take before we see an improvement in our son’s congenital muscular torticollis?

    A: In general, the majority of children with congenital muscular torticollis show improvement after a few months of physical therapy, especially when it is started early. Every child is different, so be sure to discuss any concerns you may have with your son’s doctor and physical therapist. Your son may need a referral to a specialist if he has no or limited improvement after physical therapy. 

    Q: Does congenital muscular torticollis affect some infants more than others?

    A: It may affect firstborn children and twins more often, because there is a greater chance of too little space, or “crowding,” in the uterus and birth canal. This can cause damage or constriction to the SCM muscle. It may also happen after a difficult birth, especially when babies are very large or have a breech delivery. 

    Q: My son has been diagnosed with benign paroxysmal torticollis. Is this the same as congenital muscular torticollis?

    A: No, they are separate conditions. Be sure to talk to your son’s neurologist to discuss the differences. In general, benign paroxysmal torticollis is noted by periodic bouts, or “attacks,” of torticollis, typically lasting for hours or days. Some children who are affected by this type of torticollis go on to develop migraine headaches later in life.


    Questions to ask your doctor 

    You and your family play an essential role in your child’s treatment for torticollis. It’s important that you share your observations and ideas with your child’s treating physician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

    You’ve probably thought of many questions to ask about your child’s condition. It’s often very helpful to jot down your thoughts and questions ahead of time and take them with you, along with a notebook, to your child’s appointment. That way, you’ll have all of your questions in front of you and can take notes to bring home with you.

    Some questions to ask the doctor might include:

    • What kind of torticollis does my child have?
    • What can I do to improve the range of motion of my child’s head and neck?
    • Are there modifications I need to make to my child’s crib and surroundings to encourage her to stretch her neck muscle?
    • How often does my child need to see the doctor, physical therapist and/or other specialists?


    Useful medical terms 

    Benign paroxysmal torticollis: One type of acquired torticollis in which there may be recurrent episodes, or “attacks,” of head tilting. Often these attacks are accompanied by other symptoms such as vomiting, irritability and/or drowsiness. 

    Congenital muscular torticollis: The most common form of pediatric torticollis, in which the sternocleidomastoid (SCM) muscle becomes shortened and contracted, causing the head to tilt persistently to one side. 

    Dystonic reaction: An acute muscle spasm that happens in an abnormal response to certain medications.

    Gastroesophageal reflux (GERD): The flow of acidic stomach juices, food or fluids back up into the esophagus. This condition is very common in infants.

    Klippel-Feil syndrome: A rare disease that is congenital (present at birth) and characterized by the abnormal fusion (union) of two or more bones in the spinal column within the neck. Children with Klippel-Feil syndrome may also have an abnormally short neck, restricted movement of the head and neck and a low hairline at the back of the head. 

    Plagiocephaly: A malformation of the head characterized by a persistent flat spot on the back or side of the skull, which leads to asymmetry (unevenness) of the head and face. Sometimes, children with torticollis also have plagiocephaly because gravity pulls unevenly on the tilted head and face. 

    Sandifer syndrome: A rare condition in children, Sandifer syndrome causes  gastroesophageal reflux (GERD) (vomiting or “spitting up”) along with spasms and abnormal posturing of the neck. 

    Sternocleidomastoid (SCM) muscle: The SCM is a long muscle in the side of the neck that extends up from the thorax to the base of the skull behind the ear. This is the muscle that’s shortened in congenital muscular torticollis, causing a baby’s head to tilt to one side. Sometimes there will also be a little lump, or “pseudo tumor,” on this muscle. 

    Subluxation: An abnormal rotation of the vertebrae known as C1 and C2 in the cervical spine (the part of the spine that extends into the neck). 

    Tubular Orthosis for Torticollis (TOT) collar: A loop of soft, clear tubing that children older than 4 months can wear around their necks. This can help correct head alignment. Talk to your physical therapist before using one of these collars.

  • Tests

    How is torticollis usually diagnosed?

    Here at Children’s, our specialists will obtain a full medical history and perform a comprehensive physical exam of your child. 

    When an infant is believed to have torticollis along with an underlying skeletal abnormality, X-ray imaging or magnetic resonance imaging (MRI) may be necessary to confirm the diagnosis. 

    Medical history

    Your child’s doctor will begin by asking you a series of questions that will help determine the type of torticollis your child has. Questions may include: 

    • How old is your child?
    • When did the torticollis develop?
    • Did the torticollis happen suddenly or slowly?
    • Was there any trauma to the head or neck?
    • Does your child have a fever?
    • Does your child have an infection?
    • Has your child had any surgeries in the head and/or neck?
    • Have you noticed any other symptoms?
    • Has your child been exposed to any medications or drugs? 

    Physical examination

    Your child’s doctor will perform a complete physical and neurological exam to determine the type of torticollis she has. This exam involves: 

    • checking the range of motion of the head and neck
    • palpating (examining by touch) the SCM muscle in the neck to see if there is a small lump, or “pseudo tumor,” that happens in about one in three cases of congenital muscular torticollis
    • looking for the presence or absence of asymmetry or unevenness of the face and head to check for a condition called plagiocephaly (it’s important to check for this because the child’s head and face may develop unevenly due to the pull of gravity upon the tilted head)
    • checking your baby’s hips and how they rotate (this is because there is a slightly higher chance that babies with congenital muscular torticollis may develop hip dysplasia

    Your doctor may also request other imaging studies, such as ultrasound, to look for certain abnormalities in the spine that may be a sign of rare but serious health problems.

  • Boston Children's Hospital is a national leader in diagnosing and treating children with all types and degrees of torticollis. 

    Like the patients themselves, the treatment options for torticollis are specific to the individual child. Your child's doctor will give you detailed recommendations for treating your child. In the meantime, here are some of the basics:


    Treatment options for congenital muscular torticollis

    Once your doctor has determined that your child has congenital muscular torticollis, you and your child will begin a program of physical therapy designed to lengthen the shortened SCM muscle. 

    Physical therapy programs will include specific exercises you can do at home on a set schedule, such as during diaper changes. In addition, you will learn how to hold your baby and tailor his environment to encourage him to turn his head and stretch the SCM muscle. 

    Your child's physical therapist may recommend using a simple device called a “TOT collar.” TOT stands for Tubular Orthosis for Torticollis, which is really just a small piece of plastic tubing that fits around your baby's neck. The TOT collar is designed to help babies straighten their heads and strengthen their neck muscles. Your physical therapist will teach you the proper way to use a TOT collar.

    At Children's, we're also dedicated to the needs of children who have torticollis with asymmetry of the face and head, known as plagiocephaly. We have found that these kids usually respond very well to non-surgical, minimally invasive interventions like:

    • customized, corrective helmets and molding cups
    • sleep position changes
    • special exercises

    Sometimes other measures, such as surgery, are required to correct the shortened SCM muscle in torticollis and any asymmetry that may happen with plagiocephaly. Children's offers a range of treatment options in our Orthopedics and Plastic Surgery programs to address your child's specific treatment needs. 


    Treatment options for acquired torticollis

    Your child's treatment plan will vary based on the cause of the torticollis. Some common therapies include: 

    • nonsteroidal anti-inflammatory drugs (NSAIDs) to relieve pain and discomfort related to musculoskeletal injury
    • antibiotic therapy for children whose torticollis is caused by infection
    • medications to stop gastroesophageal reflux for children whose primary cause of torticollis is reflux


    Coping and support 

    When your child has a chronic medical condition, your family is grappling with many concerns and questions. Not only are you focused on meeting all of your child's medical needs; you are also facing a significant emotional and psychological toll that can affect every member of the family.

    In addition to the clinical information offered on this page, Children's has several other resources designed to give your family comfort, support and guidance:

    Patient and family resources at Children's

    Children's Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:

    • being sick
    • facing uncomfortable procedures
    • handling pain
    • taking medication
    • preparing for surgery
    • changes in friendships and family relationships
    • managing school while dealing with an illness
    • grief and loss 

    Children's Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:

    • short-term therapy for children admitted to one of our inpatient units
    • parent and sibling consultations
    • teaching healthy coping skills for the whole family
    • educating members of the medical treatment team about the relationship between physical illness and psychological distress 

    The Experience Journal was designed by Children's psychiatrist-in-chief David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with medical conditions and going through treatment. 

    Children's Department of Psychiatry publishes a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”(.pdf file). Topics in the booklet include:

    • talking to your child about her condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment 

    Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the Center's services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
     
    The Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment. 

    Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.

    Helpful links

     Please note that neither Boston Children's Hospital nor the Department of Neurology at Children's  unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

    • You may also want to join a torticollis support group on the Internet. One helpful website is www.TorticollisKids.org.
       
    • If your child has a form of torticollis caused by a rare disease, you can reach out to other parents at www.Inspire.com. This support network is sponsored by the National Organization for Rare Disorders (NORD).
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