Torticollis

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.

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.

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.

Congenital muscular torticollis

For children with congenital muscular torticollis, the most common form of pediatric torticollis, the 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
• 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 syndrome, an inherited metabolic disorder that prevents the body from breaking down sugar molecules

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)

Here at Boston 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.

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 Boston 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. Boston Children's offers a range of treatment options in our Orthopedic Center and Department of Plastic and Oral Surgery to address your child's specific treatment needs.

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

At Boston Children’s Hospital, we 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.