PANDAS – a guide to the little-known immune condition in children

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Dr Tim Ubhi is a recognised expert on PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and a founding member of the UK PANS PANDAS Physicians network and a member of the European Immunopsychiatric Association. He has treated over 500 patients with PANDAS over the past 2-3 years and has extensive knowledge of the treatment strategies required to help these patients.

 

In addition, Dr Ubhi is also the CEO and clinical director of The Children’s e-Hospital, the worlds first online child health service developing innovative tools to help manage common conditions in children.

What is PANDAS?


PANDAS is a disease that affects children and results in symptoms such as obsessive compulsive behaviours, tics, anxiety, urinary problems (such as wetting or enuresis) and eating problems including difficulty swallowing or eating restrictions. The symptoms usually occur suddenly in a child that has previously developed normally. Some parents describe it, ‘like a switch has been thrown’.

 

What’s the difference between PANS and PANDAS?


PANS (Paediatric Autoimmune Neuropsychiatric Syndrome) can be considered to be an umbrella term to cover a number of different causes of sudden onset tics and obsessive-compulsive behaviour when the causative organism is identified as streptococcus – a common bacterium causing sore throats, chest infections, sinus.

 

What happens to cause the symptoms?


With PANDAS the affected child will at some point develop a streptococcal infection and the body, quite appropriately, produces antibodies to fight the infection. Unfortunately, the antibodies that are produced cross react with the brain causing inflammation and then symptoms. The symptoms of PANDAS often occur once the active infection is over.

 

How is it diagnosed?

The key element in obtaining a diagnosis is to review the history and organise the appropriate investigations to obtain objective evidence of the disease process. Most children will have been through a process of examination by a primary care physician (GP), paediatrician or paediatric neurologist and the confirmation of a diagnosis is unfortunately very dependent on whether or not the treating doctor is familiar with these conditions. A survey carried out by the Children’s e-hospital in 2019 showed that 90% of GP’s were unfamiliar with PANS PANDAS.

 

How is it treated?


The main strands of treatment are to use antibiotics and anti-inflammatory therapies to control infection and inflammation. In the UK we have learnt how to treat patients without the need for intravenous immunoglobulin (IVIG) except in the most severe cases. Immunoglobulin therapy simply mops up the causative antibodies but in the UK we have been unable to access this therapy easily due to contract restrictions in the NHS.  Dr Ubhi has treated over 500 patients with PANS PANDAS and has developed a model of care that in the majority of patients removes the need for IVIG. The last audit of the patients treated by The Children’s e-Hospital showed that nearly three quarters of patients had a good response to treatment.

 

What’s the prognosis?

If treated early, the outlook for patients is very good. Early recognition and prompt treatment is essential to ensure that full recovery happens as quickly as possible.

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