About Sydenham’s chorea, PANS and PANDAS

Sydenham’s chorea and PANS/PANDAS (Paediatric acute onset  neuropsychiatric syndrome/Paediatric autoimmune neuropsychiatric disorders associated with streptococcus) have many similarities.  Here we will try to explain the difference.

There are a lot of similarities with PANS and PANDAS, but it is important to distinguish them.  To get a diagnosis of PANS or PANDAS, other possible diseases including Sydenham’s chorea need to be ruled out.   

• You may see similar symptoms of involuntary movements, tics, changes in mood and behaviour.  
• You see the same pattern of sudden onset of symptoms, gradually getting better but then sometimes coming back again, months or even years later. 
• For both Sydenham’s chorea and PANDAS, there must be evidence of a preceding streptococcal infection (although the initial streptococcal infection may have been mild and you may not even have recognised it as a bacterial infection at the time).    
• There is some research evidence showing the same antibodies (targeting the brain) can be found in both Sydenham’s Chorea and PANDAS. Unfortunately, these tests are not available to NHS patients in the UK.
• Some of the treatments used for patients with SC have been tried in patients with PANDAS.  
• There are gaps in understanding of both SC and PANDAS.
• Both conditions are rare and doctors (GPs or paediatricians) do not always recognise them when they first present. Tests may be necessary to look for other diseases.

The reason it is important to work out, if possible, which one you have (Sydenham’s Chorea or PANDAS) is as follows:

• There is a risk of chronic heart disease in Sydenham’s Chorea, even after the other problems have gone away.  This is because Sydenham’s Chorea is related to rheumatic fever.  Long term antibiotic treatment is recommended to prevent both Sydenham’s chorea symptoms and further heart damage.
• In PANS and PANDAS, long term antibiotics may be tried to reduce or prevent symptoms but there is only limited evidence that these help.  
• There is evidence that using immune therapies in Sydenham’s Chorea, including steroids and intravenous immunoglobulin, although since symptoms settle by themselves in most cases, it isn’t essential to use these.
• In PANS and PANDAS, immune therapies may be tried but there is only limited evidence that these help.

If there is doubt about whether it is Sydenham’s Chorea or PANDAS causing symptoms, it seems sensible to get a heart scan (even if there isn’t any obvious sign of a heart problem), and seek advice from a doctor familiar with what chorea looks like. 

Sometimes even after seeing specialists and doing tests, it still isn’t clear what the diagnosis is.  Then it is usually best to concentrate on trying to look at the particular problems your child is having and try to address them individually. This will often require help from a range of different people, including a mental health professional, a paediatrician, an occupational therapist, among others.

Further support is available from PANS PANDAS UK.