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PANDAS: The Nightmare Disorder
is an acronym for pediatric autoimmune neuropsychiatric disorders associated
with streptococcal infections. The general public knows little about this
misunderstood disorder. But if you can ask any family afflicted by it, they’ll
tell you what a nightmare it can be to diagnose and manage.
What is PANDAS?
The term PANDAS was coined in 1998 by Dr. Susan Swedo. Streptococcal-A infections are normally mild – resulting in a minor skin infection or sore throat – though they can also cause scarlet fever and other illnesses. Most children make a full recovery, yet some develop sudden physical, neurological and psychiatric symptoms. These rapidly worsen when the strep antibodies mistakenly attack proteins in a particular area of the brain – the basal ganglia.
Similar symptoms can be triggered by infections that don't involve strep bacteria. Those cases are referred to as pediatric acute-onset neuropsychiatric syndrome (PANS). Both PANS and PANDAS are autoimmune conditions triggered by infection. Both disrupt a patient’s normal neurological functioning.
However, the medical community is divided and much controversy surrounds its diagnosis and treatment. Dr. Wendy Edwards is a leading doctor specializing in PANDAS. She points out that while some doctors are becoming aware of this disorder, others refuse to even consider the possibility.
Moreover, PANDAS is often misdiagnosed. Once believed as extremely rare, now medical specialists speculate that 25 per cent of patients who are diagnosed with OCD and tics are likely to actually have PANDAS. For this reason, Dr. Edwards believes it is much more common than people think.
The symptoms of PANDAS appear suddenly, usually four to six weeks following a strep infection. Psychological symptoms may include obsessive and compulsive behaviours, extreme anxiety, emotional and developmental regression, depression or severe mood changes. Physical symptoms may include tics, unusual movements, deterioration of minor motor skills, inability to focus, and frequent urination.
These symptoms may decrease over a period of a few days to a few weeks. However, they suddenly worsen once another infection strikes and new symptoms may also manifest.
Dr. Edwards says an early warning sign is when a child exhibits a very sudden change in their personality. “When I hear someone say ‘this is not my child’ indicating that they have completely changed, then that is a huge clue that this is likely PANDAS,” she says.
PANDAS is most likely to develop in children between the ages of three and 12 who have had a strep infection within the previous four to six weeks. Genetic predisposition and recurrent infections are other possible risk factors.
Living with the Nightmare
One Montreal mother (who asked to remain anonymous) observed curious behaviour in her son when he was three years old. It ranged from extreme separation anxiety to obsessive compulsive behaviours that included changing his clothes and washing his hands incessantly. At one point, he got sick with a fever and cough, but the doctor did not test him for anything.
Shortly after, the strange behaviour continued and even worsened. He developed facial tics, and began to stutter, pace, and urinate frequently. His mother recalls days where he spent hours in the bathroom. "It is absolutely heartbreaking to watch your child going through all of these things, many of which can be debilitating," she says.
The nightmare continued. Her son was misdiagnosed with separation anxiety, OCD, ADHD and autism. In one instance, the doctor called for a psychiatric evaluation, which resulted in a prescription for Prozac. It took over three years for him to be properly diagnosed with PANDAS when an active strep infection was found.
Treatment often includes medication. “Antibiotics, if given fairly soon after the start of the behavioural changes, does seem – at least in my experience – to help a lot,” Dr. Edwards says. “They work not only to rid the body of the infection if it is still there, but also in other ways that can calm the immune system and/or decrease inflammation.”
Cognitive behavioural therapy is another option. It explores the correlation between behaviour, feelings and thoughts. This helps children manage their symptoms. Dr. Edwards adds that more research is being done to determine the root causes of the disorder and its treatment.
But the biggest challenge for Quebec families is finding the appropriate medical care. Very few doctors in this province are willing or able to diagnose and treat PANDAS. It can take years to simply get a diagnosis. Some parents have to resort to going out of province for help.
When children are properly diagnosed and treated early, the prognosis can be promising. Some respond quickly and resume their normal lives, but many get misdiagnosed, don’t respond well to antibiotics, and continue experiencing severe symptoms. And although PANDAS is considered a paediatric disorder, there’s no guarantee it will disappear before the age of 12.
The sooner an infection is caught, the easier it is to heal. Lingering infections can take longer to dissipate and may cause permanent damage. “A simple prescription for antibiotics given at the start of the illness might prevent all this,” Dr. Edwards adds. Early detection and treatment are essential.
For more information on PANDAS, visit pandasnetwork.org, pandascanada.wixsite.com/pandascanada or pandaspansontario.org.
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