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)
- 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 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.
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.