PANS/PANDAS Symptoms [& What to Do About Them]

As a parent, one of the scariest experiences of my life was seeing my child wake up with OCD symptoms virtually overnight. Separating food, acting aggressively, losing the ability to get to sleep, facial tics — these are just a few symptoms of PANS/PANDAS.

We have walked through these with our own child and now share the hope we found with our patients encountering the same thing.

PANS and PANDAS are closely related disorders, sharing the same symptoms and same treatment options. Their causes and diagnosis criteria, however, are a little different.

It’s important for parents to understand PANS/PANDAS and be able to spot the symptoms right away

What is PANS/PANDAS?

PANS stands for “Pediatric Acute-Onset Neuropsychiatric Syndrome.”

PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.” PANDAS is technically a subset of PANS, even though PANDAS was identified first.

PANDAS happens when a Group A strep infection (such as scarlet fever, strep throat, or rheumatic fever) seems to trick a child’s immune system into attacking their own brain, specifically the basal ganglia. This leads to sudden onset OCD and other mental health symptoms.

PANS is basically the same autoimmune disorder, but the sudden onset of symptoms occurs in the absence of a strep infection. There is less known about what can trigger PANS, but here are some suspected PANS triggers:

• Chickenpox
• Mycoplasma (walking pneumonia)
• Lyme disease
• Mononucleosis
• Epstein-Barr virus
• H1N1 flu virus
• Bartonella henselae bacterial infection
• Toxin exposure

PANS/PANDAS affect children between 3 years old and puberty. A person’s susceptibility to PANDAS usually goes away with puberty.

Boys are twice as likely than girls to develop PANDAS.

Diagnosing PANDAS: Symptoms & Guidelines

A clinical diagnosis of PANDAS includes:

• Determining a child has/had strep throat, using throat cultures or blood tests
• Identifying sudden onset OCD and two other PANDAS symptoms
• Ensuring these symptoms are not due to another condition, like Tourette syndrome or autoimmune encephalitis

PANDAS symptoms have been broken up into eight categories, if you count OCD as the first. These eight categories were decided on by a group of experts in 2010, including PANDAS forerunner Dr. Susan Swedo.

1. Sudden Onset Obsessive-Compulsive Disorder

The primary PANDAS symptom is abrupt onset OCD.

Other symptoms stem from this obsessive compulsive behavior, which involves obsessions (recurrent and persistent thoughts) and compulsions (repetitive behaviors or mental acts).

OCD symptoms may manifest as an eating disorder, so that’s considered in the diagnostic criteria.

2. Anxiety

PANDAS may trigger several forms of anxiety:

• General anxiety
• Separation anxiety
• Irrational fears and phobias

In mild cases of PANDAS, a nearby parent can comfort a child’s anxiety, helping the child go to sleep or rest.

3. Emotional Lability and Depression

“Emotional lability” is when a child switches from one emotion to another in an instant. For example, a child might be laughing and suddenly start crying for no reason.

Emotional lability has been known to lead to sudden depression. In severe cases, suicidal thoughts occur.

4. Aggression, Irritability, and Oppositional Behaviors

Children with PANDAS may exhibit sudden aggression. In milder cases, your child might simply be more irritable than usual. “Oppositional behavior” refers to conflicts which arise when children stubbornly refuse to follow parental directions or the instruction of teachers.

5. Behavioral (Developmental) Regression

When a child reverts to an earlier stage in their development, this is called “behavioral regression.” A seven-year-old might start using baby talk, lose the ability to draw, or play with toys they haven’t touched in years.

This can be a tricky neuropsychiatric symptom. It’s important to make sure a child’s behavioral regression is not a symptom of ADHD or autism.

6. Sudden Deterioration in School Performance or Learning Abilities

One of the more time-sensitive symptoms of PANDAS is a sudden drop in academic performance.

If a child suddenly develops symptoms of OCD, aggression, depression, and behavior regression, it’s no surprise that poor school performance follows.

7. Sensory and Motor Abnormalities

A child’s immune system attacks the brain, but this affects more than just the child’s mental health. They may develop:

• Increased sensitivity to light, sound, smells, tastes, textures
• Sensory-seeking behavior (an increased desire to climb or go fast on their bicycle)
• Deterioration of handwriting skills, AKA dysgraphia
• Clumsiness
• Brief hallucinations
• Physical or vocal tics

8. Somatic Symptoms

Somatic symptoms usually include changes in a child’s sleep and urinary frequency. They may develop:

• Insomnia
• Night terrors
• Trouble sleeping more than a few hours
• Bedwetting
• Frequent urination
• Increased urgency when they have to urinate

How are PANDAS symptoms different from PANS?

PANS and PANDAS symptoms are essentially identical. The main difference between PANS and PANDAS is the cause of the symptoms.

Whereas PANDAS is triggered by a strep infection, PANS is broader. PANS may be triggered by a number of infections, such as chickenpox, H1N1 flu, or Lyme disease.

Hope for Thriving with PANDAS

Researchers suggest a multidisciplinary approach to treatment options for PANDAS. At Vine Healthcare, we take this a step further using our Fully Functional® process:

1. We IDENTIFY anything adversely affecting the child’s health
2. We REDUCE the these things
3. We OPTIMIZE the body’s ability to detoxify
4. We SUPPORT the body and the immune system and provide much needed social support for the whole family.
5. We PERSONALIZE treatment to each patient, rather than using one-size-fits-all methods.

Although other physicians may treat PANS/PANDAS, our Fully Functional® process separates us from the crowd. Our organized approach provides you child and your family the best chance at recovery.

Here are the treatment options that may be used to treat PANDAS:

• Anti-inflammatory diet and supplements
• Cognitive behavioral therapy
• Plasma exchange, AKA plasmapheresis
• Intravenous immunoglobulin (IVIG)
• Tonsillectomy
• Corticosteroids
• Vitamin D to avoid a deficiency, since recent research reveals up to half of children with PANDAS have a vitamin D deficiency
• Antibiotics, though we wouldn’t suggest a reliance on antibiotics, so as to maintain your good bacteria (AKA your microbiome)
• SSRIs (selective serotonin reuptake inhibitors), though the adverse side effects don’t really justify the lukewarm results in treatment of PANDAS

You need to work with us! We are experts in PANS/PANDAS diagnosis and treatment.

If you think your child may have developed symptoms of PANDAS or PANS, contact Vine Healthcare in Carmel, Indiana.

In Summary

• What is PANDAS?
  • PANDAS is “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections”. This means a strep infection sometimes tricks a child’s immune response into attacking the child’s own brain. This leads to OCD and other related symptoms.
• What is PANS?
  • PANS is “Pediatric Acute-Onset Neuropsychiatric Syndrome”. It’s a broader condition with the same symptoms of PANDAS, but is triggered by something other than strep bacteria.
• What are PANS and PANDAS symptoms?
  • Obsessive compulsive symptoms, including eating disorders
  • Anxiety
  • Emotional lability and depression
  • Aggressive, oppositional behaviors
  • Behavioral (developmental) regression
  • Drop in academic performance
  • Sensory/motor abnormalities, like tic disorders
  • Somatic symptoms, like insomnia and urination changes
• What are the treatment options for PANDAS?
  • Cognitive behavioral therapy
  • Plasma exchange, plasmapheresis
  • Intravenous immunoglobulin (IVIG)
  • Corticosteroids
  • Vitamin D, if the child has a deficiency
  • Antibiotics
  • SSRIs, although side effects and efficacy are not ideal

Sources

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2. 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
3. Breitschwerdt, E. B., Greenberg, R., Maggi, R. G., Mozayeni, B. R., Lewis, A., & Bradley, J. M. (2019). Bartonella henselae bloodstream infection in a boy with pediatric acute-onset neuropsychiatric syndrome. Journal of central nervous system disease, 11, 1179573519832014. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423671/
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