PANDAS – is it a real condition?

Not too long ago, there were children who experienced COVID-19 and subsequently developed a chronic fatigue syndrome called “Long COVID”. Afterwards, we saw children who did not have COVID-19 but had received the vaccine (at the time we were able to differentiate between those who had the infection and those who had received the vaccine) and also developed a similar syndrome. Oh well.

We then saw children who did not get the infection or the vaccine but also suffered from a long COVID type of syndrome.

So, what did we conclude from all of this? Sometimes we have medical conditions that falls under a grey zone. There are parents and physicians that could swear that these conditions exist, and there are parents and physicians that could swear that they don’t. Who is right and who is wrong? Good question.

It is always so confusing. If there is such a medical condition, then maybe my child is experiencing it and should be treated? And if there isn’t, then why is someone is playing a joke on me and is wasting my time and resources?

PANDAS syndrome, or PANS syndrome, nice to meet you.

What is my goal behind writing a chapter about PANDAS?

It is important to set goals. So, I have two main goals here, that are a little bit contradictive:
a. To present a medical condition where there is ongoing debate about how real and clinical it is. And in my opinion, and I’ll address this later on as well, a part of it is evidence based and therefore I do think you should be familiar with it.
b. To warn you, the parents, of overdiagnosis of this medical condition, so that you don’t waste your time on unnecessary medical therapies.

What is PANDAS?

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Pediatric – belonging to the pediatric field.
Autoimmune – mechanism of autoantibodies where the body produced antibodies that attack its own self
Neuropsychiatric – clinically involving neurological and psychiatric issues.
Streptococcal infections – related to the known bacteria streptococcus that belongs to group A, which we have discussed extensively on the website here.

What happens to people that experience PANDAS?

According to the known definition, if there is anything really known about this condition, then it presents with symptoms that are mainly new onset, or, worsening of OCD (obsessive compulsive disorder) and/or tics that occurs during the short period of time following a streptococcal infection, mostly a throat infection.

Wait, what is PANS then?

PANS is the acronym for Pediatric Acute onset Neuropsychiatric Syndrome. This is allegedly a sub-group of PANDAS in which similar symptoms present after general infections caused by different viruses or bacteria, but not strep.
In other words, and as you will learn below, these are those cases with similar presentation where there is no evidence of prior streptococcal infection.
It kind of reminds us of the long-COVID syndrome we had without COVID.

Does it always have to happen in a child with prior OCD or tics?

No.
It can happen in a healthy child that has new onset OCD or tics and it can also happen in children previously diagnosed with OCD or tics but now presenting with worsening symptoms.

So, only OCD and tics?

The medical literature talks about additional symptoms, including:
• Irritability and sudden anxiety
• ADHD – attention deficit and hyperactivity disorders
• Separation anxiety
• Mood changes
• Sleeping disorders
• Bed-wetting
• Changes in handwriting
• Joint pain

Theoretically speaking, why would such symptoms occur after a streptococcal infection?

According to the hypothesis, a streptococcal infection drives the onset of autoantibodies that blocks a certain area in the brain that is responsible for the involved symptoms (tics and OCD).

Does it make sense that there would be autoantibodies following an infection?

Yes, we see this in other similar conditions that are better established than PANDAS, where an activation of autoantibodies and neurological/psychiatric conditions occurs following an infection (usually viral).
This is an interesting field in pediatrics and adult medicine, that has had many new recent outbreaks.
However, this is not true to PANDAS, where the medical literature is unimpressive and lacks the required evidence.

How can one know whether a child had a previous infection with streptococcus?

Firstly, we can ask the family whether the child had a recent throat infection or something similar, and whether the bacteria was isolated using a rapid throat swab or regular bacterial culture.
Secondly, we can check for antibodies called ASLO in the blood, and if they are present in high quantities, this could indicate that the child had a strep infection in the 2 months prior to the test. The ASLO levels do not increase if a child is simply a carrier, but only when there was active disease.

Do we have a lab test for PANDAS?

With the exception of the proof of prior strep infection as discussed above, we do not have any lab tests for this syndrome.

What are the ages in which PANDAS presents?

If PANDAS does exist, it happens in younger children and it corresponds to the age at which strep infections are most common. That means over the age of 3 and in adolescence.

Are PANDAS or PANS proven syndromes?

PANDAS is a grey condition. It is only partly proven in the medical literature. In my medical textbooks, PANDAS is a hypothesis.

How is this syndrome managed?

Before I start writing about a specific management for this mysterious condition, it is important to keep in mind that there are both behavioural and pharmacological therapies available for tics and OCD, and therefore before we jump into the trial therapies, using the known therapies available is encouraged.
Autoimmune neuropsychiatric illnesses that I have mentioned before are treated with IVIG, anti-inflammatory medications, anti-depressive medications and even a treatment called plasma-pheresis.
PANDAS does not have a specific treatment and none of the above therapies have proven to be helpful.
If there is a strong suspicion for PANDAS, we try to prevent streptococcal infections in the child and we keep a low threshold for infections.

Does PANDAS require prolonged prophylactic therapy for months?

This is not common practice when it comes to PANDAS despite what was written in the article I mentioned earlier.

Is there a connection between this syndrome and autism?

No. PANDAS can theoretically occur in anyone. Our textbooks do not mention PANDAS or PANS as a cause for autism.

So, what should we do if we suspect our child may have PANDAS?

You should consult with an excellent pediatric neurologist so that they can determine the correct diagnosis and management.
If the child was previously diagnosed with tics – treat that promptly.
If the child is experiencing anxiety – treat appropriately.
If the neurologist suspects your child may be experiencing PANDAS – go with their diagnosis and treatment plan.

What not to do:

If your child is experiencing any one of these problems, including ADHD, tics, OCD, relationship disorders, etc, do not rush to apply what you read in newspapers or Facebook on them and be careful when diagnosing them with PANDAS or PANS or anything else.

See your doctor, and if they are not aware of the syndrome, consult with a pediatric neurologist and make a joint decision about how to proceed.

Do not dismiss or skip important therapies, whether behavioral or pharmacological, that have been proven to be helpful and have been administered to children for years, because of an allegedly new syndrome.

In summary, I know there are families that could swear that PANDAS exists and that a specific treatment has provided them relief. I accept that. I know there are other families who have been given the wrong diagnosis and received unnecessary treatment.
Where does the truth lie? On either side of the center.

I wish your children excellent and safe, evidence-based medicine. All the best!