On Monday, you had a bright, happy, well-behaved elementary school child, happy to feel better after a short-lived case of strep throat. But by Wednesday, his behavior evolved to include overwhelming depression, bedwetting, obsessiveness, tics, and other disturbing symptoms.
Sound like the stuff of nightmares for a parent? I agree — but these symptoms, while rare, may be signs of conditions known as PANS and PANDAS.
In PANS/PANDAS, a child or adolescent experiences a rapid onset of symptoms common in obsessive-compulsive disorder along with certain neurological features. The symptoms are often alarming, and many pediatricians aren’t familiar with these conditions or what treatments to begin.
At The M Center, my colleagues and I work with children who have PANS or PANDAS, identifying the underlying causes of this condition and working with families to find hope.
What is PANS/PANDAS?
PANS stands for “pediatric autoimmune neuropsychiatric disorders.” PANDAS syndrome stands for “pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections”.
Both PANS and PANDAS are autoimmune conditions that generally lead to rapid, unexpected symptoms of OCD (obsessive-compulsive disorder) and neurological disturbances. This “acute and dramatic symptom onset” happens in a period of 24-48 hours and is usually concerning enough to parents to rush to the pediatrician or, in severe cases, to the emergency room.
However, it is important to note that many cases of PANS/PANDAS do not present as acutely and symptoms including anxiety, aggression, sleep disturbances and other symptoms can develop over time.
In addition, some parents report these changes after their child has been in contact with siblings or classmates with colds or viruses, even if they did not present with those symptoms themselves.
Generally, boys are two times more likely than girls to develop PANS/PANDAS. This disorder typically presents in children as young as one year old through preteen years, though children seem to be at the highest risk around age eight.
PANDAS was identified first, in 1998, after a decade of research found that a preceding strep infection (strep throat, peri-anal strep, or scarlet fever) was connected to this cluster of symptoms. The most frequent bacterial offender is Group A Streptococcus, or GAS.
However, later research showed that streptococcal infections weren’t the only trigger. This led to the establishment of PANS, a broader classification for this subtype of pediatric neurological disorders that recognizes the possibility that other infectious agents may cause the same autoimmune reaction.
PANS can be triggered by viruses, bacteria, mold, allergies, and even emotional trauma and stress!
Put simply, PANS is a subtype of pediatric neurological disorders, and PANDAS is a subset of PANS used when strep infection was identified before symptoms began.
These conditions happen when certain antibodies, produced by the immune system during an illness, cause an inflammatory reaction in the basal ganglia (at the base of the forebrain).
Common Symptoms of PANS/PANDAS
Symptoms of PANDAS or PANS can range from mild to severe, and may include a large number of possible combinations.
Once this disorder has occurred once, a child may experience flare-ups or “exacerbations,” especially if exposed to the same offending bacteria or viral agent. In some cases, symptoms will change in severity between flares.
Here, I divide the symptoms based on their general types, as defined by PANS diagnostic criteria.
Sudden Onset Obsessive-Compulsive Disorder
The first, most obvious symptoms of PANS or PANDAS is the rapid development of obsessions and compulsions seen in OCD. While this mental health condition generally happens over the course of many weeks, months, or years, in PANS or PANDAS, it occurs within 1-2 days (though some children’s symptoms are a bit longer to onset).
Obsessive-compulsive disorder must match up with the criteria set by the DSM and cause significant distress to the patient to qualify them for the diagnosis. These “recurrent and persistent thoughts” (the obsessions) result in an attempt to suppress the thoughts that’s typically played out as “repetitive behaviors or mental acts” (the compulsions).
Pediatric OCD may also show up as symptoms of an eating disorder or severely restricted eating. The child may suddenly refuse to eat or even hint toward body dysmorphia.
Anxiety
Some form of anxiety is almost always present in children with PANS or PANDAS. Often, the child has an initial terror or panic over something that develops into a general anxiousness over the course of the condition.
This may take the form of:
- Separation anxiety (from a person or, less commonly, an object)
- Generalized anxiety
- Irrational fears or worries separate from those specifically related to compulsions
- A specific phobia
Emotional Lability and Depression
“Emotional lability” describes the way a child may change very quickly from one emotion to a completely unrelated or different emotion. One example of this is a child who has been laughing joyfully suddenly bursting into tears for no apparent reason. These children often describe some kind of inner “restlessness”.
This can take on the form of sudden and pervasive depression and, in some cases, suicidal ideation.
Aggression, Irritability, and Oppositional Behaviors
Aside from the apparent frustrations or outbursts a parent might see in pediatric OCD, children with PANS/PANDAS may act aggressively and be constantly irritable. Typically, this is most noticeable in children who normally have a sweet, pleasant demeanor that changes overnight.
Behavioral (Developmental) Regression
Regression is defined as a change in behavior or activity that is significantly different than the child’s biological and previously established emotional/developmental age. When a child develops PANS/PANDAS, he or she may lose the ability to draw the same way or even start using “baby talk”.
The way these changes are most easily observed is in schoolwork, especially writing or artistic assignments.
Sudden Deterioration in School Performance or Learning Abilities
As you might imagine, all of these symptoms may result in a child being unable to learn or perform as before. These deficiencies can happen due to a loss of attention span, decreased concentration, and a number of other factors.
However, it’s important to note that this is only included as a diagnostic symptom if it’s separate from other learning disabilities or ADHD that have already been seen in the patient.
Sensory and Motor Abnormalities
A wide variety of problems with sensory or motor skills can happen in PANS/PANDAS cases, like:
- Increased sensitivity to light, smells, sounds, textures, or tastes
- Sensory-seeking behaviors (needing to touch or interact with specific things)
- Visual hallucinations, which are usually brief
- Dysgraphia (deterioration of handwriting skills)
- Verbal or physical tics
- Clumsiness
- Choreiform movements
Somatic Symptoms
“Somatic” symptoms simply refer to physical manifestations of a clinical disorder.
Most commonly, these will include sleep disturbances (such as night terrors, problems falling or staying asleep, or waking up very early in the morning) and urination changes (bedwetting, changes in urinary frequency, or increased urgency to use the bathroom).
Diagnosing PANS and PANDAS
The criteria for a clinical diagnosis of PANS or PANDAS are the same, with one major difference: to be diagnosed with PANDAS symptoms, a child must test positively for strep bacteria. This isn’t always via throat culture — strep can show up in the nasal cavity, stool, or blood (via viral titers).
Not every child with PANS will test positive for Group A Strep, but those who do (and fit all the other criteria) may be classified in the PANDAS subgroup. This can be tricky, though, since rapid strep tests provide false negatives up to 15% of the time and a strep infection can trigger PANDAS as long as 6 months after the infection.
To diagnose a child with PANS, the criteria for doctors are as follows:
- The patient has experienced an abrupt onset of OCD, which may include more classic OCD symptoms or eating disorder/restriction symptoms. In some patients, this happens slower than others.
- At least two of the seven neuropsychiatric symptoms have been observed within the same short period of time:
- Anxiety
- Emotional lability and depression (may even be associated with suicidal ideation)
- Aggression, irritability, and oppositional behaviors
- Behavioral (developmental) regression
- Sudden deterioration in school performance or learning abilities
- Sensory and motor abnormalities
- Somatic signs and symptoms
- Other neurological or medical conditions have been ruled out as the root cause of the condition. Specifically, your doctor should rule out:
- Sydenham Chorea (a tic disorder also caused by strep infection)
- Rheumatic fever
- Lupus
- Tourette’s
- Acute disseminated encephalomyelitis
- Pediatric OCD (not rapid onset)
- Eating disorders
- Bipolar disorder
- Autoimmune encephalitis
- Wilson’s disease
- Systemic autoimmune disease
11 Treatments for PANS and PANDAS
Treatment options for these conditions aren’t always straightforward, as this diagnosis and research are still so relatively new.
However, because this is an autoimmune condition at the root, we work with patients not only to clear up the initial infection, but to help support better immune function as a whole.
Because these treatments are quite broad, some researchers suggest a multidisciplinary team is the best way to help your child heal. Specialists, such as psychologists/psychiatrists and behavioral specialists may play a vital role.
Treatment for these conditions fall into three basic categories:
- Immunomodulatory: Various treatments are used to impact the function of the immune system and temper the inflammation causing symptoms.
- Antibiotic/Antimicrobial: This is often used as the first line of defense, in order to kill off the triggers causing the incorrect immune response. But this isn’t limited to just prescription antibiotics — there are many effective herbal antimicrobials that we have used successfully to address PANS/PANDAS without the use of antibiotics.
- Psychotherapeutic: In addition to treating the physical concerns, practitioners typically see significant success when treating the psychological impacts of PANS/PANDAS.
Below, I discuss the common treatments for PANS/PANDAS, including those from a conventional and a more functional approach.
1. Antibiotics
Because cases of PANS and PANDAS are thought to be caused by some sort of bacteria, virus, or mycotoxin, antibiotics are frequently used to treat symptoms. These are most useful when trying to prevent and shorten future flares by preventing future infections.
However, prescription antibiotics may negatively impact the microbiome and increase adverse symptoms.
Instead of turning immediately to traditional antibiotics, we utilize a number of herbal antimicrobials based on Stephen Harrod Buhner’s approach. These may include:
- Cryptolepsis
- Lomatium
- Takuna
- Baikal skullcap (Scutellaria baicalensis)
- Kudzu tincture
2. Peptide Therapy
Peptide therapy has only been around since about 2015, but since then, it’s shattered expectations for treatment of many diseases.
Using the proteins (peptides) the body already uses to modulate internal processes, peptide therapy can influence a massive number of conditions and symptoms. They’re associated with very few side effects, as the body typically welcomes peptides to the protein party — they’re recognized as part of the body that already exists!
While no trials have been published on specific peptide therapies for PANS/PANDAS, we’ve seen a great deal of success with our patients at The M Center.
Why, you may ask, would we use a treatment like peptide therapy over something more “conventional,” such as IVIG therapy? The answer is simple: When treating PANS/PANDAS, the key is to start “upstream,” meaning at the root of the problem. Most conventional PANS/PANDAS treatments are all based on treating/managing symptoms rather than reversing the condition.
3. Dietary Changes
Supporting the gut isn’t just about supplementation; it also requires a diet that reduces inflammation and boosts the immune system. One good model of a diet to reduce inflammation and other underlying triggers for PANS/PANDAS is the GAPS diet.
My recommendation to parents is to eliminate inflammatory foods and anti-nutrients from the diet, like gluten, dairy, and sugar, and focus on healthy alternatives, such as:
- Fruits and veggies, especially those high in antioxidants, fiber, and minerals
- Organic, non-processed meats, fish, and eggs
- Healthy fats, like avocados, olive oil, and coconut oil
- Nuts and seeds
According to Buhner’s protocol, we also recommend additional supplements that may help to address symptoms and underlying causes of PANS/PANDAS. These are:
- Cilantro tincture (for children with major sensitivity to environmental toxins)
- Fermented cod liver oil
- High-dose vitamin D3
- Chinese senega root tincture (for seizures)
4. Vitamin D
Vitamin D is important for a healthy immune system — sadly, up to 90% of Americans don’t get enough of it. This seems particularly true for children with PANDAS, almost 95% of whom were vitamin D deficient in a 2018 study.
A child with PANS/PANDAS should take between 1800-2800 IU vitamin D3 daily, depending on age. This number may be higher in more at-risk populations, including those who are obese, of African, Asian, or Hispanic descent, or who live in areas with long winters and infrequent sunshine.
5. Probiotics
The gut-brain axis plays a role in PANS and PANDAS — one that we understand only in part today. As the human gut microbiome houses such a large portion of the immune system, it stands to reason that supporting the gut with probiotics helps improve immune responses. Probiotics may also serve as one treatment for a leaky gut, which has already been associated with many types of autoimmunity.
To date, only animal research is available to back the claim that probiotics directly impact the progression of PANS/PANDAS. However, the significance of probiotic therapy is still great when it comes to any form of autoimmune condition, especially considering the lack of side effects compared to many other treatment options.
6. Plasma Apheresis
For patients with severe, life-threatening PANS/PANDAS, plasma apheresis (also called therapeutic plasma exchange, or TPE), might be one way for your child to find relief.
This process involves blood being cycled out of the body, “cleaned”, then returned back to the body through an IV.
In a clinical trial of 35 severely ill PANS/PANDAS patients, plasma apheresis resulted in some level of improvement for every subject. Over the follow-up period, symptoms improved 78% on average.
However, this is extremely costly and difficult to get covered by insurance.
7. Nonsteroidal Anti-Inflammatory Drugs (NSAIDS)
In September 2017, two studies were published defining preliminary results about how NSAIDs may help with the symptoms of PANS/PANDAS. Both trials saw some improvements in symptoms, although not to a great degree.
We prefer to later a short course of NSAIDS with longer term use of natural anti-inflammatories. Also, if I have your genetics, I will search for a particular single nucleotide polymorphism (SNP) that may make it more difficult for your child to process NSAIDS.
8. Steroids
A course of oral steroids may both shorten the length of the first flare of PANS/PANDAS and reduce the length and severity of future exacerbations. For severe cases, long-term use of steroids may be recommended.
Again, however, there are more natural options that can often result in the same effect that we utilize as a first line of treatment for our patients!
9. Cognitive Behavioral Therapy
Cognitive behavioral therapy (CBT) is the most effective treatment currently used for pediatric OCD.
Only one clinical trial has observed similar results in patients with PANS/PANDAS specifically, and found that symptoms decreased by 49% across the small number of subjects. All eight participants maintained these improvements over time, suggesting that CBT may help reduce symptoms in PANS cases.
10. Antidepressants and Antipsychotics
In varying degrees, medications like SSRIs (selective serotonin reuptake inhibitors) and antipsychotic medications have been used to manage PANS/PANDAS symptoms.
However, these are among the least effective treatments researched to date, and not used in our practice.
Due to major antidepressant withdrawal concerns, combined with the major side effects, especially in children, seen from antidepressants and antipsychotics, I rarely recommend this option to patients. If we feel this course of action may be beneficial, we will refer you to psychiatry.
11. Intravenous Immunoglobulin (IVIG)
As part of boosting the immune system, IVIG therapy may be effective in moderate-to-severe cases of PANS/PANDAS to reduce OCD symptoms. This treatment has shown mixed results, though, and may not be as helpful as originally thought.
IVIG is a more “downstream” treatment that does not address the core root of the immune dysregulation. That’s why we don’t recommend it.
As Dr. Maia often explains, IVIG helps the body take the trash out more often — but does not reduce the amount of trash the body is making.
Our approach to immune modulation is designed to reduce the amount of trash the body is making!
Possible Causes and Risk Factors of PANS/PANDAS
This list comprises triggers that we know or suspect may cause PANS, or that are considered risk factors:
- Streptococcal infection, particularly by Group A Strep
- Genetic predisposition to neuropsychiatric disorders
- First-degree relative with an autoimmune condition
- Bartonella henselae infection
- Lyme disease
- Mycoplasma (walking pneumonia)
- Mononucleosis
- H1N1 flu virus
- Epstein-Barr virus
- Herpes simplex
- Varicella
- Environmental toxin exposure
In Summary
- PANS/PANDAS are autoimmune conditions that cause “acute onset” OCD and other neuropsychiatric symptoms in children and adolescents.
- Typically, these symptoms flare up throughout early life, but can be resolved by adulthood.
- PANS differs from other forms of pediatric OCD due to its rapid onset, usually within just a couple of days.
- Family support can be crucial when you have a child with PANS/PANDAS. Check out the list of support groups from the PANDAS network to find one in your area.
If you suspect your child has PANS/PANDAS, it’s important to work with a pediatrician you can trust. Contact The M Center in Roswell, GA for a consult today.
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