Many years ago, I first heard about this strange abbreviation, PANDAS. It was about children who were no different from their peers except that they would occasionally have fits of hysteria. In this state, these children could destroy everything around them and cause harm to themselves and those around them. Of course, when this happened in front of their peers, it had a highly negative impact on the socialization of these children. Their peers avoided them, and teachers also felt tension and often requested the presence of an assistant to help control these children. After all, a child could start behaving uncontrollably again at any moment.
After an episode, these children couldn’t explain the reason for their behaviour, and there was no way to prevent a similar episode from occurring. These children were recommended to work with a psychologist, and they were simply taught to control their behaviour and/or put on medication, which redirected them to a psychiatrist.
But when it was discovered what might be behind these behavioural problems, it became clear that relying solely on psychological help in this situation was somewhat naive.
So, what is PANDAS/PANS?
PANDAS is a childhood autoimmune neuropsychiatric disorder associated with streptococcus.
So, at first, a connection was found between streptococcal infection and behavioural problems. The hypothesis first emerged in 1998. It was later discovered that not all children with behavioural issues had a streptococcal infection. The symptoms in the child were indicative of PANDAS, but a streptococcal infection couldn’t be found. That’s when the assumption was made that similar problems could be caused not only by a streptococcal infection. This is how the abbreviation PANS was coined. To avoid creating numerous diagnoses, it was decided that PANS is an infection that causes symptoms similar to PANDAS, but the cause of the problem is not a streptococcal infection.
PANS is a pediatric acute-onset neuropsychiatric syndrome.
What Problems Do PANDAS/PANS Cause?
PANDAS and PANS cause the sudden onset of severe obsessive-compulsive disorder (OCD) symptoms.
OCD is a condition that causes obsessive thoughts that can lead to compulsive actions.
These conditions can also cause other sudden changes in a child’s behaviour. These changes can be so extreme that parents might tell you how their child “literally changed overnight.” Additionally, the symptoms can be so severe that hospitalization may be necessary, and serious medications may be used to control the child’s behaviour.
Parents can be completely baffled by this situation. They might come up with all sorts of explanations but rarely think of an infection. Is it puberty? Bad influence from peers? Did the child try some banned substances? Or maybe it’s just the result of stress?
It’s extremely difficult for parents to figure all this out on their own. The best thing you can do in this situation is to consult a doctor. But not just any doctor; this doctor should already be familiar with PANDAS and PANS. Keep in mind that this information is relatively new, and not all doctors are familiar with how to handle these issues. It’s only this year that PANDAS and PANS will finally be included in the World Health Organization’s (WHO) list of diagnoses, and diagnostic criteria are still being developed.
OCD, PANDAS, and PANS
Children with PANDAS and PANS may have obsessive thoughts, compulsions, or both—OCD.
- Obsessive thoughts: A child may develop new and strong fears. Or they may have new obsessive thoughts about things needing to be even, clean, dirty, or meeting some other criteria. Stressful thoughts or images may come into their head repeatedly. These fears, thoughts, and anxieties can be so strong that it’s difficult for the child to regain balance. Understand that, for your child, these fears are very real.
- Compulsive behaviour: A child may constantly wash, touch things, perform certain movements, or repeat something to feel better. During this time, the child is unable to stop. For example, a child may enter and exit a doorway many times, trying to do it “correctly.” What is considered “correct” is determined by the child. From an outside perspective, it may seem like the creation of strange rituals. However, for the child, this process provides a sense of stability.
Other Symptoms of PANDAS/PANS
Children with PANDAS/PANS may also have other symptoms:
- Tics or seizure-like movements;
- Anxiety, depression, or mood swings;
- Aggressive or hyperactive behaviour;
- Baby talk or clingy behaviour;
- New bedtime fears;
- Sudden problems with handwriting or other fine motor skills;
- New problems with memory, reading, or math;
- New nighttime bedwetting;
- Sleep problems;
- New food fears, tendency to refuse to eat;
- New sensitivity to noise, touch, clothing, or light.
Can infections really have such an impact on the brain?
I understand that it may be hard to believe, but here’s a simple example: a mouse infected with toxoplasmosis stops fearing cats. It is believed that infections can indeed alter brain function in this way. This change occurs to make the mouse more likely to be eaten by a cat because cats can be hosts for toxoplasmosis, while mice are not. The infection needs to somehow get into the cat’s body, so the infection suppresses the mouse’s fear of cats.
Don’t doubt it; infections can indeed change our behaviour at the brain level.
What Causes PANDAS/PANS?
As we mentioned earlier, the cause is an infection. But why do some people get PANDAS while others with the same infection only experience a sore throat? Experts believe that PANDAS/PANS occur due to an individual’s immune system reacting to the infection in a specific way. It was previously believed that the infection had to enter the brain in these cases.
Now, it is believed that instead of targeting the microbes, the immune system mistakenly targets a part of the brain: the basal ganglia. This part of the brain influences thoughts, feelings, movements, and other types of behaviour. Irritation of this brain area is believed to lead to PANDAS/PANS symptoms. The infection itself doesn’t enter the brain; it triggers an autoimmune response where the body attacks its own brain.
What’s the Difference Between PANDAS and PANS?
PANDAS is the most common cause of symptoms and tics, with Group A streptococcal infection as the trigger. Initially, the child might indeed have strep throat, and then the problem takes a different form, which is called PANDAS.
PANS, on the other hand, is when the abrupt onset of OCD symptoms is associated with any other infection. This can include the flu, chickenpox, mycoplasma, Lyme disease, and other infections.
How Do Doctors Diagnose and Treat PANDAS and PANS?
Not all children with OCD have it due to PANDAS or PANS! Diagnosing PANDAS or PANS takes time for doctors. They need to gather information, find a connection between the onset of symptoms and other issues, and perform tests for possible infections. Unfortunately, there is no single test that can confirm or rule out a PANDAS/PANS diagnosis.
How Are PANDAS/PANS Treated?
First and foremost, you need to identify the trigger. PANDAS is treated with the same methods used for streptococcal infection, but the duration of treatment is different. PANS is treated based on the specific infection that is found. Additionally, if the problem hasn’t yet become clinical or if the child has passed the acute phase, these issues can be treated with alternative medicine methods. Depending on your situation, your doctor will suggest possible treatment options.
Psychological support for the child will also be beneficial but don’t rely solely on a psychologist. Psychological support is often needed for parents who are often stressed when seeking medical help. They, too, need assistance to navigate the difficult period until the situation is under control and the right treatment is found.
Are PANDAS and PANS Contagious?
No, PANDAS and PANS are not contagious. Children cannot catch them from someone else. Strep throat, caused by a streptococcal infection, can be contagious, but children with PANDAS or PANS are typically not in a group setting when they are ill; they are at home receiving treatment. Not every child will develop antibodies attacking the brain in response to an infection; it likely requires a genetic predisposition.
Who Is at a Higher Risk?
Regarding PANDAS, it often occurs in children aged 3 to 13, with the most common onset around age 8. It tends to affect boys more frequently. Several months may pass after a streptococcal infection before PANDAS symptoms arise. Less is known about how PANS develops.
How Can You Help Your Child?
If you suspect your child may have PANDAS or PANS, seek help from a doctor and ask for an evaluation. It’s best to start therapy as soon as possible.
Remember that both of these conditions can recur. In the case of PANDAS, relapses often occur when the child returns to school in the fall because that’s when they may be exposed to streptococcal infections again. If this happens, you may need to seek a doctor’s help again to regain control, and it will help your child grow and develop more steadily.
PANS-PANDAS TREATMENT GUIDELINES
Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections