Norfolk mum calls for more research into PANDAS disorder

Medical experts says this caused by a child's immune system mistakenly attacks healthy cells- instead of bacteria from a strep infection

Author: Tom ClabonPublished 26th Oct 2024

A mum in Norfolk of a boy with a disorder known as PANDAS- is calling on decision-makers to invest in more research to identify, prevent and treat this condition.

Medical experts says this caused by a child's immune system mistakenly attacks healthy cells- instead of bacteria from a strep infection- and can lead to sudden flare ups of severe OCD.

"He changed into somebody who was terrified of going to school"

She says this all means they've had to make big changes to their day-to-day lives:

"He changed overnight from being a very happy, confident child who loved school. He loved it so much that he refused to have a day off when we were going to away, once. But then he changed into somebody who was terrified of going to school and has debilitating OCD"

"As a family it's now difficult to make plans ahead of time because we're nervous about how he might be or whether he'd be able to cope.

So for example, my husband and I wouldn't plan on doing something together in the evening, that would involve us leaving him with somebody else, because he may really need us there.

What is PANDAS?

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

What are the symptoms for it?

People with PANS and PANDAS may experience a variety of different physical and mental health symptoms.

Such as:

-Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)

-Tics

-Emotional lability and/or depression

-Irritability, aggression, and/or severely oppositional behaviours

-Behavioural (developmental) regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety)

-Sudden deterioration in school performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)

-Motor or sensory abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture)

Insomnia and/or sleep disturbances

Is there any treatment for this?

Some treatments, like antibiotics, can help control or reduce symptoms of PANDAS (including OCD, anxiety, depression and tics). Other treatments, like IVIG therapy, address the underlying infection and autoimmune reaction that causes PANDAS.

(Source: PANDAS Network)

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