
THE CONDITION
WHAT IS SYDENHAM'S CHOREA?
Sydenham’s Chorea (also known as St Vitus’ Dance or Chorea Minor) is a disease affecting the brain, particularly causing unusual movements, unsteadiness and poor coordination.
It can turn a previously healthy child into someone unable to speak, walk or feed themselves.
It happens after a common bacterial childhood infection, usually a sore throat, caused by Streptococcus pyogenes (also called Group A streptococcus). In certain individuals, for reasons which are unclear, their own immune system reacts in an unusual way to this infection, where even though the infection is cleared, parts of the child’s brain called the basal ganglia are also affected.
The basal ganglia are collections of brain cells located deep within the brain which have a role in controlling movement and emotional responses.
Sydenham’s Chorea usually develops a couple of weeks (but up to six months) after a child has suffered a Streptococcal infection. You may not even remember or realize that your child had a Streptococcal infection.
Most people who develop Sydenham’s Chorea do so before the age of eighteen. It is more common in girls than boys.
Sydenham’s Chorea can occur as part of a wider inflammatory response called Rheumatic Fever, which involves other parts of the body including the skin, joints and heart.
WHAT ARE THE SYMPTOMS?
Sydenham’s Chorea can present in a number of ways. Often the child’s behaviour changes, before the abnormal movements start.
Over hours to days, uncoordinated jerking movements in the arms, hands, legs, feet and face start to be seen. These movements are called chorea. Sometimes the chorea only involves one side of the body (this is called “hemichorea”).
Further neurological symptoms of Sydenham’s Chorea include:
• changes in mood and behaviour,
• fatigue,
• problems using hands to play or eat,
• floppiness (loss of muscle tone),
• speech difficulties,
• swallowing difficulties
• problems with walking,
• grimacing,
• headache,
• attention and concentration difficulties,
• emotional difficulties,
• restlessness.
Children with Sydenham’s Chorea often have other kinds of odd movements such as tics (see below), which can include involuntary noises.
Other physical problems may be due to rheumatic fever (joint pain, for example).
See examples of chorea at our Youtube playlist.
HOW IS DIAGNOSED?
The diagnosis of Sydenham’s Chorea may be made as a result of a review of the story of the child’s symptoms and a physical examination by a General Practitioner (GP), a Paediatrician or at an Accident and Emergency department. There is no definite test for Sydenham’s Chorea, but tests may be important to rule out other conditions that might be
suspected in some cases. The diagnosis may be supported by a blood sample or throat swab looking for signs of Streptococcal infection.
Once the diagnosis has been suspected, a child may be referred to a specialist Paediatric doctor called a Neurologist who will further assess by asking questions and physically examining them, before confirming a clinical diagnosis of Sydenham’s Chorea. Sometimes a child may need to go for an MRI scan to rule out other conditions, but this is not always necessary.
Tests are more important if the child does not have typical features of Sydenham’s chorea, if there is no evidence of recent streptococcal infection, or if rheumatic fever is rare in the community.
A possible diagnosis of rheumatic fever should be considered: in the first instance, an echocardiogram of the heart is required to identify possible heart inflammation (which is not easy to identify just with a stethoscope or ECG).
Depending on a child’s condition, the Neurologist or Paediatrician may refer on to other professionals, including:
• Cardiologist
• Community Paediatrician
• Educational Psychologist
• Child and Adolescent Mental Health Team
• Paediatric Neuro-Psychiatrist
• Neuro-Psychologist
• Physiotherapist / Occupational
• Therapist / Speech & Language Therapist
• Rheumatologist
• School Nurse
• Specialist Nurse
CHOREA AND TICS
Chorea is a particular kind of abnormal movement that is a key feature of Sydenham’s Chorea, although it can be seen in other conditions.
The movements are involuntary, that is to say the child cannot control them, and in this sense they are similar to tics.
The child will often look as if they are unsteady, as if their legs are going away from under them, or as if they are staggering. They will often find it difficult to do things with their hands, such as writing or playing, because their hands and arms will keep going the wrong way.
The chorea usually develops over a day or two. Sometimes it only involves one side of the body (called “hemichorea”).
There are other abnormal movements that are seen in Sydenham’s Chorea, such as grimacing (odd facial expressions) and “piano playing” movements of the hands and fingers.
Symptoms can vary over time, for example the chorea is often more noticeable if a child is tired or unwell.
Your doctor may try to treat the movement disorder if it is having a major impact on the child’s day to day functioning. With or without medication, it almost always settles down although it usually takes 2 to 4 months, but it can take a year or more. It just varies from patient to patient. See our Youtube Playlist for more examples.
There are children who suddenly develop tics, where it isn’t clear whether the diagnosis is Sydenham’s Chorea or something else, for example PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Tics are quite common in childhood, more common in boys, they often come and go over the years before disappearing around or after puberty. It can be hard to tell the difference between tics and chorea, which is why having an experienced doctor is important.
Tics are sudden, jerky or flailing movements, typically of the eyes, face, neck, shoulders and arms. You will see the same movement happening over and over (this is called “stereotyped”), although there can be long breaks in between. Many different tics can be present at the same time, and one kind of tic can go away after a while, only to be replaced by another. Some children also make involuntary noises, such as grunts and yelps, these are also a kind of tic (“vocal tic”).
Chorea tends to be a mixture of fast (jerky) and slower (writhing) movements and is likely to be more chaotic and unpredictable.
So, observing and describing all the different kind of movements is really important for getting to a diagnosis, as is looking for the other features of Sydenham’s Chorea such as the grimacing and “piano playing” fingers mentioned above, plus features of streptococcal infection and evidence of rheumatic fever (such as heart damage).
WHAT IS THE TREATMENT?
Treatment for Sydenham’s Chorea is based on the following steps:
Antibiotic treatment, recommended to remove any persisting Streptococcal infection. Antibiotics probably do not shorten the duration of Sydenham’s Chorea, however.
Preventive, long-term penicillin (or an alternative antibiotic in case of penicillin allergy) is recommended. There are international guidelines on how long-term penicillin (or an alternative antibiotic) should be continued; there may be slightly different guidelines for different countries or regions.
Where intramuscular penicillin is recommended, it should be delivered with the application of strategies to reduce associated pain and distress. Injections that include a local anaesthetic are an effective measure to reduce pain.
There is some evidence to suggest that long-term penicillin prevents relapses of movement disorder (chorea).
Immune treatment should be offered in moderate to severe cases, where the muscle/movement (or behaviour, or psychiatric) problems are having a significant impact on daily life. There is evidence that corticosteroid treatment reduces the severity and duration of the movement disorder from an average of 119 days to just 54 days. Corticosteroid treatment may also reduce the risk of relapse. If this does not help, or if corticosteroids are not suitable for other reasons, intravenous immunoglobulin (IVIG) or plasma exchange treatment should be considered.
Doctors may offer medicines to treat the movements of chorea if it is having a major impact on the child’s day to day functioning. There is only limited evidence to show which medicine might be best and all the drugs that might be used are likely to have side effects. Doctors should discuss the choice of medication with families/patients. The 2025 guidelines have shown that a drug called sodium valproate, which is mainly used for treating epilepsy, can be helpful, with a favourable overall balance between the expected benefits and the risk of adverse effects. Other similar drugs may be tried.
The child may find activities of daily life (e.g. washing, eating, going to school) challenging. Specialists including occupational therapists, physiotherapists, speech and language therapists can assess and help the child do as much for themselves as possible, and prevent loss of muscle strength.
If behavioural or emotional problems are distressing in the early stage of the illness, it is important to be aware that they may settle naturally. Where problems persist, or if an acute intervention is required, then there should be input from appropriate specialist mental health services (Neuropsychiatrist, Neuropsychologist or other experienced professionals). After specialist assessment, psychological treatment and/or psychiatric medication may be helpful. Specialist mental health input may be necessary where there are problems with mood or anxiety.
HOW LONG WILL IT LAST?
The movement disorder (chorea) almost always settles down either on its own or with the help of medication. This can take months or even longer and varies from patient to patient. Symptoms can vary over this time, for example the movement disorder is often more noticeable if the child is tired or unwell. In a small proportion of children there are persistent symptoms in the long term. Signs of continuing chorea may be very mild and barely detectable.
The movement disorder and associated behavioural symptoms can recur later in childhood (a relapse), in which case the child should be assessed again. Investigations, antibiotics and steroid treatment may be required, even if this was not felt to be necessary the first time. For most people relapses do not continue.
Older medical papers and textbooks suggest that one in five children with Sydenham’s Chorea will have at least one relapse during childhood. Many doctors now feel this may be an under-estimate.
It is very rare for patients to have relapses during adulthood, although it is recognised to occur during pregnancy (Chorea Gravidarum) and in association with the oral contraceptive pill.
Unfortunately, little is known about the effect of behaviour and mood in children who have had Sydenham’s Chorea. Most young people will make a full recovery after about two years, with no long-lasting symptoms, and will not require on-going treatment or follow-up. However, some children may experience behavioural and emotional changes that may start before and carry on after the movement disorder and may require on-going support from a Child & Adolescent Mental Health Service. These changes may come and go and sometimes there are underlying changes in the brain which can persist into adult life. The symptoms that affect a child’s mental health may need help and treatment over a longer period of time than the chorea.
HOW DOES IT AFFECT MY LIFE?
Sydenham’s Chorea should not stop the child living and enjoying life. At first, chorea movements may make it difficult for the child to get out and about like they normally do. This part of the condition should pass quite quickly as the movement disorder reduces. Some children complain about being tired and this may impact on their ability to enjoy school, hobbies, friendships and family time. This tiredness can be a problem even when there is no heart problem and after movements seem to have settled. It can help to look with your child at their activities through the week and reduce any that are not enjoyable or completely necessary, that could be potentially increasing their tiredness. This will help to focus energy and time on getting the best from their body, physically and mentally as the child builds up their strength gradually.
FEELING & BEHAVIOUR
Some children will develop emotional or behavioural difficulties. These might include depression, anxiety about separation from parents, personality changes, being overly emotional, obsessive-compulsive disorder (OCD) and attention deficit/hyperactivity disorder (ADHD). It is not always clear if emotional changes are part of the illness process of Sydenham’s Chorea or part of an emotional reaction to being ill. Sometimes emotional outbursts happen just before involuntary movements begin. Some children are able to cover up symptoms in school but behave very differently at home. This is hard for parents to manage, but is a sign that the child feels safest at home. This may mean that a child can cope in school by letting problems out with the family. Changes a child’s mental health can be very difficult for parents, grandparents, external family and siblings to adjust to. Some parents talk about seeing their child ‘changing before their eyes’.
HOW WILL IT AFFECT SCHOOL?
If the child is attending school, the school should be informed about the condition, including the possible emotional and behavioural issues. The child may notice that their concentration and attention is affected and this can make learning in the classroom harder on some days. Sydenham’s Chorea is not well known. A child may be more vulnerable to bullies if their peers do not understand the symptoms. It might be helpful to ask the school to complete a lesson on Sydenham’s Chorea to help educate the class on the condition. Some children find the chorea movements difficult to manage in school and health professionals can help to think about how to manage this more successfully. For example, sometimes a change of position in the class can mean that movements are less troubling for the child and those nearby. Extra time in exams and tests may also be needed.
There might be lots of hospital appointments to attend initially. Together with the disease this can affect the child’s attendance at school. These tips might also be useful:
• It is not helpful for children to be worrying about getting behind with work.
• It is helpful for parents or carers to link closely with school to minimise the work a child is missing and to help them to keep up.
• It is useful to pick up school-work for the child to complete at home and sometimes, teachers may visit the child to complete lessons at home.
• Starting back at school may be easier with a part-time timetable.
• It may be helpful to ask for a child to be referred to the school’s Educational Psychologist for additional support.
Original text: Nadine Mushet, research nurse and Manju Haridas, child and adolescent psychiatrist, Royal Hospital for Children, Glasgow UK. 2016
Last updated: by the SCA team (A. Sie, E. Ferrarin, M. Morton). April 2026
