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Can an autistic child have PANDAS/PANS?

This article is written for parents of special needs children with a diagnosis of Autism Spectrum Disorder (ASD), which I will refer to as autism for brevity. In this article, I won’t delve into explaining what autism is. Even if you are not a parent of such a child, you likely encounter these children in various settings. Unfortunately, autism has ceased to be a rare condition.

Symptoms associated with autism can be caused by a variety of issues. If no other problems causing similar symptoms are identified at the time of diagnosis, autism is diagnosed. Autism is nothing more than a collection of symptoms for which no other explanation was found at the time of diagnosis.

PANDAS is an autoimmune issue, where a child’s body may produce antibodies that attack specific parts of their brain (the basal ganglia), mistaking them for the streptococcal infection itself. This can lead to changes in the child’s behaviour, mood, motor skills, fine motor skills, and more.

PANS is a similar problem, but it is triggered not by a reaction to streptococcal infection but by any other bacterial or viral infection or toxins.

To get more information on this topic, please refer to the article.

What do we know about the prevalence of autism?

According to the 2019 Canadian Health Survey of Children and Youth (CHSCY), autism was diagnosed in 1 out of 50 (or 2.0%) Canadian children aged 1 to 17 years. This is nearly equivalent to the autism prevalence in the United States. Other studies suggest that between 13% and 48% of autism cases have a history of regression with skill loss.

1% to 3% of young people in the United States suffer from Obsessive-Compulsive Disorder (OCD). Among children with OCD, up to 5% may meet the criteria for PANS/PANDAS. Although up to 17% of children with Autism also experience OCD symptoms, these symptoms are rarely associated with PANDAS.

How is the diagnosis of Autism made?

The diagnosis of autism is made by a psychologist upon referral from a family doctor (MD). When referred, the doctor should have already ruled out all possible issues. The psychologist makes the diagnosis based on observing the child and relying on questionnaires filled out by parents.

This is how it should be, but it doesn’t always happen this way. Twenty years ago, when the autism rate was 1 in 500, and when my son was diagnosed, medical and genetic tests were indeed conducted before the child was referred to a psychologist for an autism diagnosis. All regular tests were performed at that time, and they didn’t show any abnormalities. Tests for all known genetic problems that could manifest with similar symptoms were also conducted, and they didn’t reveal anything either. Vision and hearing checks were carried out. Only you would know whether this process was followed in your child’s case. If such a process was not conducted, some issues may have been missed at the diagnostic stage.

The causes of autism are still unknown. To this day, it remains a set of symptoms with no other explanation. In this situation, it’s always in the child’s best interest to search for the real cause of the symptoms because there’s a chance to alleviate this problem. It’s also possible that a child has multiple issues overlapping with each other, which can present a picture similar to autism. If the cause of at least some of the symptoms is found, and treatment is administered, it significantly eases the child’s socialization and education. They may still remain within the autism spectrum, but this helps parents better cope with the remaining issues.

How can other issues be missed during autism diagnosis?

So, autism should be diagnosed after other issues that present similar symptoms have been ruled out. Consider this: we’re dealing with a child who simply doesn’t know any other life. A person who loses their hearing in adulthood understands what it’s like to hear and will notice partial hearing loss. However, a child with a hearing problem from birth may experience speech development issues. Even when a special-needs child is genuinely within the autism spectrum, they often have accompanying problems, and hearing issues complicate socialization and education.

Hearing checks should be conducted at an instrumental level. It’s impossible to accurately assess hearing based on a child’s reaction to a loud noise. It’s no better than assessing vision by shining a flashlight: if the child reacts to the light, their vision is fine. If the child reacts to a loud noise, they can hear in principle. If the child reacts to a flashlight, they can see in principle. But these checks tell us nothing about the quality of hearing and vision. Nonetheless, my child’s hearing was initially assessed based on a reaction to a loud noise, and it was only when he was 8 years old that I discovered he had very poor hearing due to fluid constantly being present behind his eardrum. As a result, he could hear, but with distortion, which, of course, negatively impacted his sensory experience and the development of proper speech.

Your child may have been misdiagnosed, and you may have missed PANDAS/PANS

We’ve come to the issue that prompted me to write this article. A child with PANDAS/PANS may have been misdiagnosed with autism. These two diagnoses share many symptoms. It’s believed that PANDAS arises spontaneously, while autism develops gradually, and this is considered a distinguishing criterion. However, I can dispute this as up to half of autistic children may have a history of regression with skill loss, which could also be a manifestation of PANDAS/PANS. Additionally, PANS caused by Lyme disease can present a completely different picture. The Lyme disease-causing pathogen reproduces very slowly. There are also cases described where autism completely “disappeared” after treatment with antiviral drugs, which most likely indicates that it was not autism but rather PANS triggered by viruses. In the case of the child described by Dr. MacCandless in the book “Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder,” an autistic girl was cured with an antiviral medication at the age of 18. We know of cases where autism “disappeared” after detoxification of a child’s body, which could have been PANS triggered by toxins.

Those who have been closely following developments in the field of autism treatment know that there have been reports of symptoms disappearing in a significant number of officially diagnosed children. Doctors have told the parents of these children that they were simply misdiagnosed. I believe it’s time to talk more about this and explain to parents that yes, an autism diagnosis can be made in error. Many children are still not receiving the necessary help for years due to this reason. It’s in the child’s and the parent’s best interest to ensure that this help is provided as early as possible.

How to understand that an autistic child may have PANDAS/PANS?

The most typical manifestation of PANDAS/PANS is the sudden onset of neurological symptoms. In the case of neurotypical children, it’s much clearer: there were no problems, and suddenly they appear, so parents are more likely to seek the cause of such a change in the situation. However, it’s not as simple when it comes to children on the autism spectrum. These children already have a diagnosis that implies such issues. Parents are often told, “They’re autistic, what do you expect?” or “It’s just a phase, hormonal changes are affecting them.” There’s always an explanation for the change in the situation if the child already has an autism diagnosis. The task of parents is to remind specialists that autism is just a set of symptoms for which there was no other explanation at the time of diagnosis.

So, let’s look at the manifestations of PANDAS and compare them with autism:

  • Obsessive-compulsive symptoms observed in OCD. This is also common in autistic individuals. You can consider autistic individuals’ reluctance to change their diet as a compulsion. They may have a very limited diet and refuse to eat, leading to hospitalization. This can also happen with PANDAS, where children can push themselves to anorexia.
  • Rapid changes in behaviour and mood. Many parents of autistic children know how often their socially challenged children, who have trouble making friends, experience heightened anxiety when separated from someone. They may have irrational anxieties and fears. Tantrums, and aggressive, or self-injurious behaviour are not surprising in autism. But these are also symptoms of PANDAS.
  • Behavioural, sensory, or motor issues or regressions, such as tic disorders. In autism, we typically talk about self-stimulatory behaviour; we rarely use the word “tics,” but they can look almost identical. We usually use the term “echolalia,” but vocal tics can also appear similar. Visual self-stimulation and visual tics can look the same as well.
  • Other signs may include deteriorating handwriting, nighttime bedwetting, facial tics, sensory sensitivity, sleep problems, anger outbursts, or baby talk. It’s challenging to notice deteriorating handwriting in an autistic child who had difficulty writing in the first place. Sleep problems and other issues are also on the list of autism symptoms. Regression in autism, as mentioned earlier, is quite common. If an autistic child who had no nighttime bedwetting problems suddenly experiences them, parents are more likely to attribute it to a regression in skill rather than thinking about PANDAS.

What can an incorrect diagnosis lead to?

As you can see, the symptoms of autism and PANDAS/PANS can be identical, but PANDAS/PANS require different treatment. I’m not talking about biomedical treatment for autism, where there is considerable overlap, and addressing the infection component is always part of the plan. The problem is that these issues were often considered the result of immune issues inherent to autistic children, not the cause of an autistic child’s symptoms. The only issue here is that parents often don’t understand the primary cause and how to properly manage PANDAS/PANS exacerbations.

On the other hand, when it comes to the standard approach to treating autism currently offered to parents by our medical system, an autistic child with an incorrect diagnosis doesn’t receive the help they need. This approach primarily focuses on addressing the behavioural aspect of the problem, which is only a small part of the necessary therapies for the child. Consequently, it’s not surprising that progress is achieved with great effort and is very unstable in such children.

How can you determine if a child has PANDAS/PANS?

The primary indicator of PANDAS, unlike autism, is the rapid onset of new symptoms, often appearing literally overnight. You may have considered this as a regression with skill loss, a well-known issue in autistic children. Recall whether your autistic child has experienced such regressions.

Think about any suddenly emerging symptoms that can be present in PANDAS/PANS: sudden loss of bladder control, sudden sleep problems, sudden loss of appetite, sudden tantrums, or sudden aggression. These symptoms can be indicators of PANDAS, and the child doesn’t necessarily need to have had a strep infection. The child can produce antibodies simply because there is a carrier of streptococcal infection nearby. Consider whether something similar has happened with your child: did problems suddenly worsen after attempting to send the child to daycare or school? Or did the child experience a regression with skill loss after some event? All of this could potentially point to PANDAS/PANS.

Treatment for PANDAS/PANS in autistic children:

Treatment can be divided into three main categories:

  • “Immunomodulatory” treatment methods to support the immune system and reduce the overall autoimmune response in the body. This reaction is what causes inflammation in the brain, often referred to as autoimmune encephalitis.
  • Identifying the infection causing the problems and reducing the infectious burden. If the situation is not out of control, this can be done with natural remedies without the use of medications such as antibiotics, antivirals, or antifungal drugs.
  • Providing psychological support to the child, which can be through a psychologist’s assistance or natural remedies that help the child better cope with stressful situations. When the situation completely spirals out of control, the child may end up seeing a psychiatrist and may require serious medications. This happens when the child becomes a danger to themselves and/or others. It’s best not to reach this point because it’s much harder to get out of such a situation than to prevent such problems.

What other issues are often overlooked in autistic children?

Unfortunately, the diagnosis of autism often leads to the assumption that all problems in the child are behavioural.

A neurotypical child with low energy levels who doesn’t play with other children is likely to be tested for anemia. An autistic child who spends most of the day staring at one spot won’t have the same opportunity because this is just one of the symptoms of autism. An autistic child who likes to lie down or jump on a ball won’t have a chance to see a gastroenterologist—they don’t complain of abdominal pain, but they might engage in such behaviour because they are experiencing such pain. From the perspective of others, this is just self-stimulation, which is a component of autism.

I can provide many more examples.

Sudden worsening of behaviour in an autistic child is not always PANDAS

In conclusion, I want to emphasize something very important. If autism is a set of symptoms for which no explanation has been found, PANDAS/PANS is a diagnosis of exclusion. Therefore, no one ever makes such a diagnosis until all other checks have been completed. You need to investigate everything else that could potentially be causing the change in the child’s behaviour.

Here’s an example: A child recently passed away under the care of a well-known Russian foundation called “Anton is Nearby.” Behavioral problems appeared suddenly, and instead of conducting checks, medical professionals decided to use sedatives, despite a high fever. In the end, the child died from urological sepsis, never receiving the necessary help.

Before suspecting PANDAS/PANS in an autistic child, you must check all other possible causes of behavioural changes. The last thing you should do in such a situation is simply work on behavioural correction.

And finally, to diagnose an autistic child with PANDAS/PANS, you need a specialist who is familiar with both issues.


Autism spectrum disorder: Highlights from the 2019 Canadian health survey on children and youth

Autism Spectrum Disorder Clinical Presentation

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Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder Paperback – Feb. 1 2009