The stories sound almost eerily the same.
One day they have a child who’s happy, engaged in school and other activities. Agreeable and easily comforted when upset, suddenly changes to a child they’ve never met before. Aggressive and anxious. Unpredictable and irrational in their moods and behaviour. They start struggling in school academically, where it never was a problem before. Screaming for comfort but refusing any physical touch. What’s more, all these changes seem to appear suddenly, in many cases, over night. Some stories noted that these changes appeared after an illness, but other times they seemed to come out of nowhere. Regardless of how the origins, the desperate requests are very clear:
‘I don’t know where my child went, but I just want them back!’
On her blog Mommy Greenest, Rachel Sarnoff writes this about her then four year old daughter:
‘By Tuesday, the fever was gone—and then the worst part hit. Tantrums that went on for hours. Facial tics. Repeating the same phrase over and over. Regression. Extreme separation anxiety. Complete irrationality. She peed in the bed and freaked out because we took her “pee pee pants” off to wash them, and spent the next hour trying to get them out of the laundry to put them back on—wet.
In writing, it doesn’t seem that bad. But to see her banging, yanking, screaming—those eyes open wide yet unseeing—it was terrifying. There were flashes of her old personality: a few minutes of coloring, where she used to sit for an hour, a 10-minute stretch when made a play picnic on the floor, a few hours out of the house. But then something would set her off and she’d have a tantrum again.’
What is PANDAS?
“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), a little known clinically defined neuropsychiatric condition which was caused by a Group A Streptococcal infection.”
Rachel wrote this in 2014 when very little was known about what she eventually realised had happened to her daughter. While researching her symptoms, she discovered it might be something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), a little known clinically defined neuropsychiatric condition which was caused by a Group A Streptococcal infection (occurring in illnesses such as Sinusitus, Ear infections, or Scarlet Fever). This triggered a misdirected immune response creating inflammation in the brain.
It is characterised by the sudden onset of obsessive compulsive disorder (OCD), and is often accompanied by multiple, unusual or complex tics, and/or an eating disorder. Neuropsychiatic symptoms including anxiety, separation anxiety and intrusive thoughts are also present. In the most severe cases the neuropsychiatric symptoms can lead to suicide ideation, self harming or homocidal thoughts. It tends to affect children between the ages of three and puberty, first appearing when between the ages 3-6 and recurring during stressful periods or after they’ve been ill. This is especially true if it hasn’t been treated properly or if they have had severe cases of PANDAS in the past.
PANDAS “is characterised by the sudden onset of obsessive compulsive disorder (OCD), and is often accompanied by multiple, unusual or complex tics, and/or an eating disorder. Neuropsychiatic symptoms including anxiety, separation anxiety and intrusive thoughts are also present.”
It was discovered by Dr. Sue Swedo in 1998 while researching more about a similar disorder called Sydenham Chorea, a rare Neuropsychiatric condition which brought on the sudden onset of OCD and movement disorders. She noticed that many of the children they were studying displayed similar symptoms but weren’t distinct to Sydenham Chorea. She believed that the same antibodies that were attacking the heart in her original study that caused heart inflammation in her patients, might be affecting the basal ganglia (in the brain) of the children, which caused inflammation. This would explain the similar symptoms as well as the additional problem of severe intrusive thoughts connected with the OCD symptoms.
The Origins of PANS
There was much controversy soon after PANDAS was discovered regarding the clarity to which it could accurately be diagnosed. For starters, there were many other disorders or conditions where a sudden onset of OCD or tics could occur, such as Lyme Disease or Mono. Not to mention, the sudden onset of unusual and complex tics could easily be confused with Tourettes Disorder (TD), as many of the criteria at the time for identifying PANDAS overlapped with what doctors knew of TD. These misdiagnoses would lead to problems with how to effectively treat it. For example, medicines commonly used to treat OCD, weren’t effective on the OCD brought on from PANDAS.
“PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) in 2012, a clinically defined disorder characterized by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, naturally accompanied with acute behavioral deterioration…”
There were also growing concerns about the ability to diagnose conditions where similar neuropsychiatric symptoms present but a Grade A strep infection wasn’t present. This led to the creation of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) in 2012, a clinically defined disorder characterized by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, naturally accompanied with acute behavioral deterioration in at least two of eight domains.
With PANS, an infection didn’t have to be considered as long as it matched the diagnosis criteria. PANDAS would then become a subset of PANS, and would now have five different criteria that would have to be met in order for a diagnosis.
Differentiating PANS/PANDAS from OCD and TD
The added criteria could help doctors differentiate PANS/PANDAS from conditions like OCD and TD, but only if doctors were aware of PANDAS / PANS in the first place.
It’s still quite easy for doctors to misdiagnose children with OCD, tic disorders or TD, along with a multitude of other conditions depending on the symptoms, including eating disorders, separation anxiety, ADHD and behavioural regression. This impacts choices of treatment given, leaving the underlying inflammation untreated. But there are clear distinctions between OCD and TD and PANS/PANDAS. For instance, by knowing that OCD typically presents in older children between the ages of 8-12, with symptoms getting worse over time you’d see that in PANDAS /PANS the sudden onset of OCD symptoms is very severe, not to mention first appears in younger children.
OCD is also not seen with many of the additional conditions that are often present with PANDAS /PANS either. Although TD is also diagnosed with a sudden onset of complex and unusual tics, and often comorbid with many of the conditions seen with PANDAS / PANS (including quite frequently associated with OCD), is clarified through the criteria. PANS/PANDAS differ due to the acute onset of tics occurring simultaneously in combination with other symptoms, thus discounting TD from a possible diagnosis. This is the same for conditions such as OCD, ADHD and bipolar disorder.
Many children are still being misdiagnosed because so many doctors are still unaware of PANS/PANDAS, but early diagnosis is crucial in reversing damage and limiting flare ups of the condition in the future.
The most severe cases of PANS/PANDAS can put children in treatment centres, especially due to the severity of some of the neuropsychotic symptoms, so proper diagnosis can work along way towards finding the best treatment plan.
Complicated Treatment Plans for PANS/PANDAS
Treating PANS/PANDAS is also quite complex. It’s not only the behavioural and neuropsychotic symptoms that must be dealt with but also treating the infections and inflammation as well.
Trying to treat all the symptoms at once will not show which treatments have been the one most effective in managing the condition or in solving the underlying problem either.
If PANS/PANDAS has not been diagnosed, some underlying causes will be left untreated, causing further complications in the future.
Children with PANS/PANDAS have many different conditions happening at once. The Stanford Children’s Health Clinic, leaders in PANS research, describe the severity and the multiple conditions in the children they see:
“These children may be extremely disruptive; they may have symptoms of OCD, mood lability and rage attacks, separation anxiety, life-threatening food and liquid restriction, oppositionality, sleep cycle reversal, fatigue, and pain. They may appear willful, but they are quite ill.’”
With so many variations in treatment plans, there is still much to learn on what is most effective in treating PANS/PANDAS. In many cases, initial treatment of the infection and inflammation will see changes in behaviour in a matter of weeks.
“In many cases, initial treatment of the infection and inflammation will see changes in behaviour in a matter of weeks.”
With many symptoms so severe it impacts the child’s ability to receive treatment, any therapy that allows the child to effectively accept initial treatment is also crucial.
Depending on the severity and nature of symptoms present, this often determines the course of treatment taken. Some antibiotics are not as effective, while some treatment like plasma exchange or IVIG are used in the most severe cases.
CBT therapy and the possible use of SSRI medication might also be needed in order to help manage symptoms too.
Finally, parents are required to learn about how best to manage any residual effect of PANS/PANDAS on behaviour as well. Monitoring the child’s condition over the next few years is very important in case any flare ups occur.
What Parents Should Know
“There is also no known clear test for PANS/PANDAS and often the response to antibiotics or anti-inflammatory treatment is what confirms the condition.”
PANS/PANDAS is unfamiliar to most doctors, even today. It wasn’t until 2018 when the World Health Organisation decided to recognise the condition. Although charities in the United States estimate that as many as one in 200 children could be affected, in the United Kingdom it’s still widely unknown. There is also no known clear test for PANS/PANDAS and often the response to antibiotics or anti-inflammatory treatment is what confirms the condition. Therefore, it is good for parents to be knowledgeable when speaking with their child’s doctor in order to advocate for their child.
When it comes to PANS/PANDAS, it is helpful for parents to:
● Write detailed notes of the changes in their child’s behaviour from the onset.
● Become familiar with the criteria for PANS/PANDAS.
● Remember that the child doesn’t have to have every symptom to be diagnosed.
● Know that children don’t have to have a current strep infection to be diagnosed with PANDAS.
● Be aware that children don’t have to have a strep infection to be diagnosed with PANS.
● Be ready with family historyon OCD, TD or tic disorders as PANS/PANDAS has been known to be more prevalent if there is a family history. This also helps rules out any other infections too.
● Research online for the list of criteria to bring to your child’s doctor.
“Do not be afraid to arm yourself with all the information that you can. Doctors are still learning about this condition and the more you know, the more you will help your child.”
Although currently PANS only has PANDAS as a subset, the more that is known about other infections or environmental factors that cause PANS, more patterns and similarities will open the door to identifying more subgroups. This will help begin tailoring treatment options, offering more effective and efficient ways for doctors to treat children.
The more we know about PANS/PANDAS, the better we can diagnose children so they are not misdiagnosed with OCD or TD. This will allow them to receive the appropriate treatment, giving them a much better chance of returning the child back to their parents as they were prior to the transformation occurring.
Sandra draws upon her Masters of Ed. Psych and her background in education to coach kids with ADHD and ADHD women diagnosed later in life.
References
BBC. (2019). Mother’s appeal after boy diagnosed with autism when he just needed antibiotics. Retrieved from https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-46989099
Blackburn, J. (2018). Tic Disorders and PANDAS. Seminars In Pediatric Neurology, 25, 25-33. doi: 10.1016/j.spen.2017.12.003
Cooper, J. (2019). Dad warns of rare illness PANS/PANDAS that saw his happy son become aggressive, anxious and lose fingernails. Devon Live. Retrieved from https://www.devonlive.com/news/devon-news/panspandas-dad-warns-rare-illness-2590009?fbclid=IwAR0CX2bGRC-4jLpvYPziVVM2T4OPSFwCJ6vst3nmsYGdWtGCW23VCtQb3tU
Doshi, S., Maniar, R., & Banwari, G. (2014). Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). The Indian Journal Of Pediatrics, 82(5), 480-481. doi: 10.1007/s12098-014-1641-y
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