If you’re the parent of a child with autism, you know that navigating your child’s development and individual symptoms can be as tricky as it is rewarding.
However, what you may not know is that there’s an infection that can mimic some of ASD’s symptoms and go undiagnosed for years in patients with autism.
I’m talking about PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
This sneaky syndrome that results from a strep infection gone wrong can remain undetected in children with ASD, hiding in plain sight like Taylor Swift’s next album clues.
As a parent, how do you recognize PANDAS? What do the diagnosis and treatment look like?
What is PANDAS?
Unlike the animal, PANDAS is neither cute nor cuddly, but a serious health concern. PANDAS is part of a larger set of issues that fall under the umbrella of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), a group of abrupt onset conditions which also includes lyme disease, Epstein-Barr virus, mycoplasma, and more.
At its simplest, a definition of PANDAS would be: a sudden onset of neurological symptoms triggered by a strep infection and subsequent inflammation of the basal ganglia in the brain. This strep infection (usually Group A strep) causes a large shift in behavior, mood, and motor skills, with the acute development of neuropsychiatric symptoms.
PANDAS was first defined in 1998, after over a decade of research and careful monitoring. So, how does this overnight shock happen?
Well, strep cells can disguise themselves to look like healthy cells, and PANDAS appears to be an autoimmune condition resulting in your immune system creating autoantibodies that attack brain cells, mistaking them for strep bacteria.
In order to fall into this specific category, the symptoms must be triggered by a strep throat bacterial infection. Here are some of the major PANDAS symptoms:
- Obsessive and compulsive symptoms, as seen in OCD. Generally in the development of obsessive-compulsive disorder, these mental health changes shift slowly, over the course of months or years. However, in PANDAS, the pivot is sudden and dramatic, happening in one to two days (though some patients may present symptoms over a longer period of time). These compulsions may also manifest around food, presenting as highly restricted eating habits or anorexia.
- Major behavior and mood changes happening rapidly. You may notice anxiousness, such as separation anxiety, irrational worries and fears, and more. It’s also common to see depression and emotional lability (quick and exaggerated changes in mood). Some parents also report new, aggressive tendencies in their child.
- Behavior, sensory, or motor skill abnormalities or regressions, such as a tic disorder. This can present as vocal tics such as humming, clearing the throat, or blurting out a certain word, or motor tics like repetitive blinking or shrugging. (Perhaps the most famous tic disorder is Tourette syndrome, a condition recently brought into the public awareness by singer Billie Eilish).
- Other warning signs may include deteriorating handwriting, bedwetting, mimicry, sensory sensitivity, sleep problems, temper tantrums, or baby talk. These are especially important to note if they are behaviors your child had previously outgrown (called regressions).
PANDAS & Autism
What is the link between PANDAS syndrome, autism, and your child? As you can imagine, it can be challenging to navigate the factors of this syndrome, ASD, and sudden health changes.
Here’s what to watch for when considering if your child’s strep throat infection may actually be something much bigger.
Misdiagnosis
As you likely have gathered from the list of symptoms, there are many behavioral, sensory, and emotional symptoms that could be conflated with autism. While they share characteristics, PANDAS is not the same issue as autism, and requires different treatment methods.
The major hallmark of PANDAS as opposed to ASD is the quick, intense attack of symptoms, usually developing within a few days (and, in some cases, weeks). This is a stark departure from the development of symptoms of ASD, which develop slowly over the course of years, often presenting as early as two years old.
Remember, a child does not develop full-blown symptoms of ASD within two days or even a few weeks. A fast onset of changes in mood, mental health, and behavior signal a different issue.
Recognizing PANDAS in Children with Autism
While no one knows why some children contract PANDAS after strep throat while others are fine, the good news is that children with autism don’t seem more likely to contract Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.
An important note is that sudden bladder control loss, sleep issues, and loss of appetite are not common developments within autism, which means that these symptoms may be indicators of PANDAS if seen in conjunction with strep throat.
If your child is displaying sudden onset issues that have not been a part of their ASD in the past, especially if they are not usually associated with autism, seek medical help without delay.
How a Pediatrician Can Diagnose PANDAS
The most important issue in a clinical diagnosis of PANDAS is finding the presence of strep bacteria, whether through a throat culture, stool sample, nasal cavity sample, or blood tests.
While PANDAS is caused by strep throat, not all cases of PANS (the broader condition) are caused by strep throat. In addition, if your child develops PANS or PANDAS but it’s not diagnosed until several weeks or months after a case of strep, bacteria cultures can show up negative.
Secondly, your pediatrician will ask some questions and observe to be sure that at least two of the seven major symptoms of PANDAS have occurred in a sudden onset.
They’ll be inquiring for signs of at least two of the following:
- Anxiety
- Emotional lability/depression
- Oppositional/aggressive behaviors
- Emotional or behavioral regression
- Deterioration in learning abilities or school performance
- Sensory and motor abnormalities
- Other somatic signs and symptoms (usually changes in sleep or urination habits)
Finally, your pediatrician will rule out other conditions that could mimic the symptoms of PANDAS. Streptococcal infections are also related to other immune-related and autoimmune disorders such as scarlet fever, rheumatic fever, and Sydenham’s chorea.
Since this is a rare disease, eliminating other health concerns can aid in narrowing down a PANDAS diagnosis. This is referred to in the medical community as a “diagnosis of exclusion.”
Since so many symptoms of PANDAS can present similarly to those of autism, it’s important to work with a pediatrician familiar with both conditions if your child may have both. This will prevent confusion and get your child the best care.
Treatment of PANDAS
Treatments for PANDAS falls into three basic categories:
First, we use “immunomodulatory” treatments to support the immune system and reduce inflammation that triggers symptoms. These may include peptide therapy, dietary changes (like the GAPS diet), and supplements such as vitamin D, probiotics, and cilantro.
In many cases, conventional or herbal antibiotics will be prescribed to fight the strep infection causing the immune response attacking your body (and any other infections present).
We prefer to stick with herbal antivirals and antibiotics at The M Center, as conventional antibiotics can damage the gut microbiome and end up making symptoms worse.
Finally, PANDAS also includes significant psychological effects, and measures like cognitive behavioral therapy can be helpful in combating them. Some pediatricians also prescribe antidepressants and antipsychotics, but I rarely recommend them due to their potentially severe side effects and low efficacy.
For a more in-depth look at PANDAS treatment options, see my comprehensive guide to PANS/PANDAS.
In Summary
- PANDAS, an autoimmune disorder characterized by sudden onset symptoms that can imitate OCD and autism, is a rare disease that may go undiagnosed in children with ASD.
- Immediate, intense shifts in behavior, academics, mood, and new compulsions are hallmarks of PANDAS, which is triggered by a strep infection.
- While it might be easy for some to mix up PANDAS and autism symptoms, PANDAS presents almost overnight, with major shifts in personality, mental health, and behavior happening rapidly, unlike the slow and steady development of autism.
- If your child has been diagnosed with autism, it’s crucial to see a pediatrician familiar with both autism and PANDAS to avoid conflating symptoms.
- Treatments ranging from antibiotics to cognitive behavioral therapy may be helpful in treating the complications that come with PANDAS syndrome and autism, but I also recommend functional measures like probiotics, vitamin D, and a healthier diet.
Do you suspect your child with autism has developed PANDAS? Contact The M Center in Roswell, GA for a consult today.
Sources
- Swedo, S. E., Leckman, J. F., & Rose, N. R. (2012). From research subgroup to clinical syndrome: modifying the PANDAS criteria to describe PANS (pediatric acute-onset neuropsychiatric syndrome). Pediatr Therapeut, 2(2), 113. Full text: https://pdfs.semanticscholar.org/18d2/35883c50806ae7a618586571d24a90bfe490.pdf
- Mental, H. S. A. (2016). Impact of the DSM-IV to DSM-5 Changes on the National Survey on Drug Use and Health. Abstract: https://www.ncbi.nlm.nih.gov/books/NBK519704/table/ch3.t13/
- Charman, T., & Baird, G. (2002). Practitioner review: Diagnosis of autism spectrum disorder in 2‐and 3‐year‐old children. Journal of Child Psychology and Psychiatry, 43(3), 289-305. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/11944873
- Chang, K., Frankovich, J., Cooperstock, M., Cunningham, M. W., Latimer, M. E., Murphy, T. K., … & Swedo, S. E. (2015). Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology, 25(1), 3-13. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/
- Swedo, S. E., Frankovich, J., & Murphy, T. K. (2017). Overview of treatment of pediatric acute-onset neuropsychiatric syndrome. Journal of child and adolescent psychopharmacology, 27(7), 562-565. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610386/
- Stagi, S., Lepri, G., Rigante, D., Matucci Cerinic, M., & Falcini, F. (2018). Cross-sectional evaluation of plasma vitamin d levels in a large cohort of italian patients with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 28(2), 124-129. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/29112476
- Cooperstock, M. S., Swedo, S. E., Pasternack, M. S., & Murphy, T. K. (2017). Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part III—Treatment and prevention of infections. Journal of Child and Adolescent Psychopharmacology, 27(7), 594-606. Full text: https://www.researchgate.net/profile/Michael_Cooperstock/publication/322010899_Clinical_management_of_Pediatric_Acute-onset_Neuropsychiatric_Syndrome_PANS_part_III_-_treatment_and_prevention_of_infections/links/5a076c7faca272ed279e58a3/Clinical-management-of-Pediatric-Acute-onset-Neuropsychiatric-Syndrome-PANS-part-III-treatment-and-prevention-of-infections.pdf
- Spartz, E. J., Freeman Jr, G. M., Brown, K., Farhadian, B., Thienemann, M., & Frankovich, J. (2017). Course of neuropsychiatric symptoms after introduction and removal of nonsteroidal anti-inflammatory drugs: A pediatric observational study. Journal of child and adolescent psychopharmacology, 27(7), 652-659. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/28696783
- Brown, K., Farmer, C., Farhadian, B., Hernandez, J., Thienemann, M., & Frankovich, J. (2017). Pediatric acute-onset neuropsychiatric syndrome response to oral corticosteroid bursts: an observational study of patients in an academic community-based PANS clinic. Journal of child and adolescent psychopharmacology, 27(7), 629-639. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749576/
- Latimer, M. E., L’Etoile, N., Seidlitz, J., & Swedo, S. E. (2015). Therapeutic plasma apheresis as a treatment for 35 severely ill children and adolescents with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 25(1), 70-75. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340509/
- Kovacevic, M., Grant, P., & Swedo, S. E. (2015). Use of intravenous immunoglobulin in the treatment of twelve youths with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 25(1), 65-69. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340809/
Calaprice, D., Tona, J., & Murphy, T. K. (2018). Treatment of pediatric acute-onset neuropsychiatric disorder in a large survey population. Journal of child and adolescent psychopharmacology, 28(2), 92-103. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5826468/
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