Help – my child has suddenly stopped eating: what you need to know about PANS and PANDAS

There are many different causes of feeding problems, some relatively commonplace and some less so. Recently, a new type of feeding challenge has come onto my radar – sudden onset food avoidance related to an autoimmune response after an infection. This is part of a wider constellation of symptoms and is called PANS/ PANDAS. It most commonly follows a streptococcal infection, like ‘strep throat’ and is characterised by obsessive compulsive symptoms.

I get many emails from parents looking for help for their child’s eating, but last week, two stood out. The reason they stood out was that they had uncanny similarities: both children were a similar age,  both parents described children whose relationship with food was fine for years, then suddenly went seriously awry and both parents were at a loss about how to make sense of their child’s changed responses to food.

It is very normal for babies to eat really well then start to limit the range of foods they eat as they hit toddlerhood. What we don’t usually see (unless there has been some kind of choking incident or other trauma) is an older child unexpectedly becoming an extremely anxious eater. I’m not talking about body dysmorphia – the kind we associate with anorexia nervosa – but an overnight change in a child’s eating with no apparent explanation.

Both mothers who contacted me have kindly agreed that I can share their stories, in order to raise awareness for other families:

Hannah got in touch because she was worried about her nine year old son. He suddenly stopped eating solid food three months ago, due to a fear of choking. Previously, he had a very varied diet and loved his food. Hannah was looking for an ARFID assessment initially, but when I suggested she look into PANS/PANDAS, she replied that he also had trouble sleeping (another symptom) AND had had a sore throat prior to his food anxiety developing. Like 90% of doctors in the UK*, Hannah’s doctor hadn’t heard of PANS/PANDAS.

Kate receives my newsletter and replied to an email I’d sent, to tell me about her eight year old daughter. She too did not have a history of feeding problems, then suddenly became extremely anxious about eating. Kate said at dinner time now, she “shakes and cries and runs away”. When I signposted Kate towards some information about PANS/PANDAS, she replied telling me that the symptoms very much resonated with her; her previously ‘model child’ had been hitting, screaming and having major meltdowns which were totally out of character. She too, had had an infection with a sore throat before the new behaviours appeared. Kate’s daughter’s new challenges with food were being seen as a mental health issue by professionals.

 

What is the difference between PANS and PANDAS?

PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome and PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS is an umbrella term for acute onset OCDs, whereas PANDAS is a label only used in cases which are known to be linked to a streptococcal infection.

 

What are the diagnostic criteria?

The following is taken from the parents’ information leaflet available from the website of UK Charity Pan Pandas UK:

For a patient to be diagnosed with PANS or PANDAS, she or he must have experienced a sudden onset of OCD, tics or severely restricted food intake where the symptoms are not better explained by a known neurologic or medical disorder; with 2 or more similarly severe accompanying symptoms from the list below:

• Anxiety (particularly separation anxiety)
• Sensory and/or motor abnormalities
• Emotional lability (extreme emotions which can fluctuate rapidly and are not always appropriate to the situation) and/or depression
• Irritability, aggression and/or severe oppositional behaviours
• Deterioration in school performance:
• Memory deficits, cognitive changes, hyperactivity, inattention, impulsivity
• Behavioural and/or developmental regression
• Sleep disturbances, enuresis, or urinary frequency

Additional symptoms often reported by parents include:

• Hallucinations and/or psychosis
• Phobias / concerns that their food is contaminated
• Trichotollomania (Hair Pulling)

Awareness

PANS and PANDAs are not widely known about within the UK healthcare system (NHS) although they are recognised by the World Health Organisation**. Some children are ending up with no diagnosis or the wrong diagnosis. Paediatric Neurologist, Andrew Curran of Alder Hey Children’s Hospital (quoted in an article for the British newspaper, The i ) believes that while it is difficult to establish the precise number, there may be thousands of children across the UK with PANDAS or PANS who are misdiagnosed. It is claimed that children with PANS/PANDAS are often wrongly told they have autism,  Attention Deficit Hyperactivity Disorder (ADHD) and mental health problems.

 

Treatment

In the world of research, a systematic review is an especially rigorous look at all the scientific studies carried out in a particular area. There is a very recent systematic review exploring treatment for PANS and PANDAS *** . It looked at various treatment options, including Cognitive Behavioural Therapy (CBT), antibiotics and SSRIs (commonly used to treat depression). The review found that for all types of treatment considered, studies were often flawed and overall, the findings were inconclusive. This is an area where more research is desperately needed.

 

What to do if you are worried

Go and see your GP (UK) or pediatrician (US). UK Charity Pan Pandas UK have an excellent downloadable information leaflet that you can take with you. Due to the lack of knowledge about PANS and PANDAS, you may need to go in armed with some educational materials.

 

Resources

US National Institute of Mental Health (NIMH)

PANS PANDAS UK

*Stat from: The Daily Mail

** According to Kat Lay, Health Correspondent for The Times

*** Sigra, S., Hesselmark, E., & Bejerot, S. (2018). Treatment of PANDAS and PANS: a systematic review. Neuroscience & Biobehavioral Reviews, 86, 51-65.