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What To Do If Your Child Has PANS or PANDAS

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Children grow and mature and change every day. But sometimes, they seem to regress. Perhaps a child starts using baby talk or starts wetting the bed. Or maybe a child loses the ability to focus and starts performing poorly at school. This article is focused on what to do if your child has PANS or PANDAS.

PANS and PANDAS are autoimmune conditions in which a child suddenly develops neurological and behavioral abnormalities — almost overnight.

Aggression, insomnia, and anxiety are all ways to recognize your child has PANS or PANDAS. We talk extensively about the symptoms below, as well as potential treatments and considerations.

PANS/PANDAS can be scary. It’s rare, but parents should understand the signs and symptoms of such a catch-you-off-guard disorder. We’re here to equip you with the information you need to help your child survive and heal from this condition.

Read on to learn more about PANS/PANDAS, symptoms, diagnostic criteria, and treatment options.

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Explanation of PANS/PANDAS

PANS and PANDAS are autoimmune disorders that affect mainly children ages 3-13. A child’s immune system attacks its own brain, specifically the basal ganglia.¹ This leads to sudden onset OCD (obsessive-compulsive disorder) and other brain dysfunction.

  • PANDAS stands for “pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections”.
  • PANS is not limited to just streptococcal infections and stands for “pediatric acute-onset neuropsychiatric syndrome”.²

PANDAS occurs after a child is exposed to streptococcal infection.³ PANS refers to similar symptoms but has a more vague causality not associated with strep. Other pathogens such as mycoplasma, influenza, and even Lyme disease have been associated with PANS. Many inflammatory events, like fungal infections or exposure to certain toxins, can also play a part.

Symptoms usually develop and intensify within a day or two, so parents often run their child to the Pediatrician or Emergency Department.

Not much hurts the way it does to see your vibrant child become a prisoner to their own obsessive thinking that leads to irrational compulsions. As a parent, this process can be alarming and lead to a heavy feeling of powerlessness.

We should know — we walked our daughter through this overwhelming process when she developed PANS a few years ago.

This growing epidemic is alarming, to say the least. Let’s take a look at the background of this condition, which was only discovered in the last couple of decades.

A Little History

About a quarter-century ago, researchers discovered a set of behavioral and neurological symptoms that children sometimes developed after testing positive for Group A strep infection (this bacteria causes strep throat, scarlet fever, and rheumatic fever).⁴ This pattern of autoimmune symptoms was dubbed PANDAS.

A few years later, though, the same set of symptoms was observed in children who had no strep infections beforehand. This gave rise to the broader term PANS.

Strep infections have been known to trigger PANDAS symptoms as long as six months after the child has a strep infection.

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PANS or PANDAS Risk Factors & Causes

PANDAS is caused by a strep infection, but PANDAS does not develop after every case of streptococcal infection. It is still unclear why strep triggers PANDAS — and why this only occurs some of the time.

  • PANS/PANDAS is pretty rare.
  • It occurs in children ages three through 13.
  • Children seem to be at their highest risk around the age of eight.
  • It is more than twice as likely to affect boys than girls.⁵
  • According to the PANDAS Network, family history of autoimmune illness and strep-related severity illness is present 70% of the time.⁶
  • Psychiatric illness in first degree family members is also noted about 70% of the time.

Why Do Some Children Get PANDAS After Infection While Some Do Not?

Research has not been able to answer this question just yet, but here are some potential ideas:

  • Only certain strains of Group A strep might lead to PANDAS. There are over 150 strains, so perhaps a dozen of those trigger PANDAS.
  • The site of a child’s strep infection may determine his or her vulnerability to PANDAS. The tonsils, oropharynx, and anus are the most common sites of strep infection.
  • Various genetic markers could leave a child susceptible to PANDAS. Researchers or healthcare professionals have suggested specific genetic defects, differences in neurocircuitry, abnormal neurosignaling during infection, or cytokine receptors.⁷

We work with parents who struggle with guilt over their child’s condition. Did we treat the strep infection early enough? Did we expose our child to something else that triggered these horrible symptoms? Remember, a PANS or PANDAS diagnosis doesn’t happen because you did something wrong. Like so many other conditions, there are simply triggers outside of your control — but we’re here to help.

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Mild to Severe Symptoms of PANS or PANDAS

It’s important for parents to understand the neuropsychiatric symptoms of PANDAS/PANS.⁸ If these symptoms arise, a parent’s knowledge can make all the difference.

Symptoms are typically split into the following eight categories:

1. Sudden Onset Obsessive-Compulsive Disorder

The main symptom of PANS/PANDAS is abrupt onset OCD. A lot of other symptoms stem from this obsessive-compulsive behavior.

OCD involves obsessions (recurrent and persistent thoughts) and compulsions (repetitive behaviors or mental acts).

This can take the form of an eating disorder as well.⁹ Also called a “restrictive food intake disorder”, eating disorders can involve restricting or avoiding certain foods.

OCD, whether or not manifested as an eating disorder, is the initial diagnostic marker when diagnosing PANS/PANDAS.

2. Anxiety

There are several forms of anxiety that PANS/PANDAS can bring on:

  • Generalized anxiety
  • Separation anxiety
  • Irrational fears and phobias

In milder cases of PANS/PANDAS, you may be able to calm your child just by staying close by. A nearby parent can act as a guardian blanket in some situations — such as if a child has trouble sleeping.

3. Behavioral (Developmental) Regression

One of the more obvious symptoms of PANS/PANDAS is behavioral regression. This is when a child reverts back to an earlier development stage, such as an eight-year-old acting like they did when they were four.

Two huge tells are if the child loses the ability to draw, or if they begin to use “baby talk.” A parent may notice other behavioral regressions, like a child playing with toys from a younger age.

This is a tricky symptom. It is important to make sure these behaviors are not a symptom of ADHD, autism, or a learning disability.

4. Emotional Lability and Depression

“Emotional lability” is when a child goes suddenly from one emotion to another. For example, a child might be laughing and suddenly act angry or cry for no apparent reason.

Because this unexpected, uncontrolled reaction is alarming to kids, it can lead to a sudden bout of depression. In severe cases, this can lead to suicidal thoughts.

5. Aggression, Irritability, and Oppositional Behaviors

Children with PANS/PANDAS may exhibit suddenly aggressive or oppositional behavior. In less severe cases, your child might just seem more irritable than usual.

If your child typically has a sweet demeanor, this neuropsychiatric symptom can be especially obvious.

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6. Sensory and Motor Abnormalities

The brain is what a child’s immune system attacks in these conditions, but this can take the form of motor abnormalities as well.

A child with PANS/PANDAS may be more sensitive to:

  • Light
  • Sound
  • Smells
  • Tastes
  • Textures

Parents or teachers might see a deterioration of handwriting skills can sometimes deteriorate, called dysgraphia.¹⁰

Children get clumsier. They may even develop physical or vocal tics. This could include tics similar to those seen in Tourette‘s syndrome or Sydenham chorea.¹¹ Chorea is when a child’s muscles move involuntarily — often up and down the arms and legs — and is quite frightening for many parents to see.¹²

He or she may also experience brief hallucinations.

Perhaps connected to behavioral regression, children with PANS/PANDAS may feel the need to interact with various objects. We call this sensory-seeking behavior. It is similar to an expected developmental stage around the age of two or three, where children want to put items in their mouths.

7. Somatic Symptoms

Somatic symptoms include abnormalities in a child’s sleep and urinary frequency.

Quite commonly, a child’s sleep schedule will go wonky. He or she could experience night terrors, insomnia, or trouble with sleeping more than a few hours at once.¹³

Another obvious sign of PANS/PANDAS is a change in bathroom habits, like bedwetting, going to the bathroom much more often, or a heightened urgency to make it to the toilet.

8. Sudden Deterioration in School Performance or Learning Abilities

An indirect symptom of PANS/PANDAS is dramatically worse school performance. It is “indirect” because it is a culmination of all the other symptoms.

If a child suddenly develops OCD, sleeps worse, acts younger than their age, and/or behaves aggressively and irritably, this is a recipe for poor school performance.

PANS/PANDAS can also trigger a short attention span, where their attention is distracted by just about anything (even their own physical or vocal tics).

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How to Diagnose PANS or PANDAS

According to the PANDAS Physician Network, the clinical diagnosis begins with either sudden onset of symptoms like OCD or a “restrictive food intake disorder”.

If a child’s OCD or eating disorder is abrupt and dramatic, a physician would determine if the child also exhibits two of these symptom categories:

  1. Anxiety
  2. Behavioral regression
  3. Emotional lability, depression
  4. Irritability, aggression
  5. Sensory or motor abnormalities
  6. Sleep disturbances, urinary changes
  7. Sudden drop in academic performance

Before making an actual diagnosis, we rule out other conditions that can look similar, like autism, ADHD, or other types of autoimmune encephalitis. Then, we look for current or recent streptococcal infections.

Sometimes it is necessary to start the child on beta-lactam antibiotics (like penicillin or amoxicillin) for a few weeks. If there is no remission, the physician may switch antibiotics or send other blood tests, looking for infectious triggers or toxin exposure.

There are additional treatment options, like IV immunoglobulin or cognitive behavioral therapy, as noted below.

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12 Ways To Treat PANS or PANDAS

Diagnosis and treatment of PANS/PANDAS should always involve a licensed healthcare professional since labs, prescription medications, and radiology studies may need to be ordered and interpreted.

There are 12 common ways to treat PANS/PANDAS — and they are not created equally. Our approach involves some (not all) of the below treatments, based on our patient’s unique needs.

As with all our treatments, we follow a Fully Functional model:

  1. IDENTIFY the problem.
  2. REDUCE the trigger(s).
  3. OPTIMIZE the body’s ability to heal and function.
  4. SUPPORT the healing process by recommending dietary, lifestyle, and even social changes.
  5. PERSONALIZE treatment to each patient, rather than using one-size-fits-all methods.

1. Mild Symptom Management

Sometimes, children only exhibit mild symptoms of PANS/PANDAS. For instance, a child might have trouble falling asleep unless a parent sits by the bedside. Or a child could act somewhat irritable, but not aggressive.

In this case, mild symptoms can be treated by antibiotics, corticosteroids, anti-inflammatories, or simply time.

A small-scale 2002 study revealed antibiotics seem to treat moderate PANDAS in two-thirds of children.¹⁴

Corticosteroids may also improve symptoms. After a short course, anti-inflammatories like ibuprofen might benefit the child. We are always careful to only use these medications when the benefit outweighs the risks.

2. IVIG (Intravenous Immunoglobulin)

Intravenous immunoglobulin, or IVIG, is when a child is administered immunoglobulins — mainly immunoglobulin G — via an intravenous infusion.¹⁵

Immunoglobulin supports your immune system. It seems to normalize imbalances of cytokines and chemokines (inflammatory chemicals), which are potential agents for immune abnormalities.

In early studies, IVIG was shown to lessen symptom severity of OCD and tic disorders.¹⁶

Although IVIG is a common treatment for PANS/PANDAS, the exact mechanism of action is unknown. However, the FDA has approved IVIG as a safe and effective method of treating other immune-related disorders in children.

If you discuss pursuing this treatment with your doctor, keep in mind that it can be quite expensive, and not all insurance plans cover it. Not all children will require IVIG to improve.

3. Corticosteroids

Corticosteroid therapy has shown positive results in some children with PANS/PANDAS. However, corticosteroids can trigger exacerbations of aggression and mania. If a child exhibits these symptoms, corticosteroids are probably not the right option.

Children may benefit from short bursts of steroids, but some require prolonged tapering steroid therapy over 30-45 days.

4. Antibiotics

Antibiotics may be a good initial choice for PANS/PANDAS treatment.

Penicillin, amoxicillin, and cephalosporins are examples of beta-lactams, the most effective antibiotics to fight Group A strep infections.

A 2018 scientific review shows that antibiotic therapy is a well-established treatment of PANDAS with an ongoing infection.¹⁷ For PANS/PANDAS in which the infection has already passed, antibiotics may not be the best option.

If a child undergoes antibiotic treatment, probiotic counter-treatment should be considered, to maintain the child’s gut microbiome.¹⁸ Antibiotics kill bad bacteria as well as beneficial bacteria. Probiotics introduce new good bacteria to the child’s gut to support immune health. They may also help prevent antibiotic-induced diarrhea and infections caused by C. diff. Bacteria.

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5. Cognitive Behavioral Therapy

Cognitive-behavioral therapy focuses on behavioral rehabilitation and mental health. This can teach children (and parents) stress-reducing rituals and avoidance strategies.

One unfortunate long-term symptom of PANS/PANDAS is negative learned behaviors. Even after the child’s immune system stops attacking the brain and symptoms recede, the child may still exhibit some residual symptoms — like involuntary habits.

Cognitive-behavioral therapy works to reverse learned behaviors, reinforcing positive behavior and retraining the mind and body to avoid negative behavior.

Examples of cognitive-behavioral strategies include:

  • Teaching the child to name their OCD
  • Teaching the child to argue against their OCD
  • Allowing the child to confront the object of their fear in a controlled way

Cognitive-behavioral therapy should be administered as part of a balanced treatment plan. Seldom will this therapy be beneficial without other treatment options to correct the underlying problem.

However, some would argue other treatment options would not be as effective without cognitive behavioral therapy. We have seen this to be true in our practice.

6. Plasmapheresis

Plasmapheresis, also known as therapeutic apheresis or plasma exchange, is a sort of blood cleaning process.

In plasmapheresis, a child’s plasma is separated from the rest of his or her blood. The plasma is replaced with albumin, which is a protein that keeps your blood from “leaking”.¹⁹

Plasmapheresis is quite invasive, carries significant yet manageable risks, and cannot be accomplished in one sitting. However, up to three-quarters of patients with PANS/PANDAS see an improvement in symptoms after plasmapheresis.²⁰

7. SSRIs

Selective Serotonin Reuptake Inhibitors (SSRIs) are often used to treat OCD and anxiety symptoms associated with PANS/PANDAS. Unfortunately, larger studies and our own clinical experience have shown that these medications are effective in a little more than 40% of cases in which they are used.²¹

Examples of SSRIs include:

  • Fluoxetine
  • Sertraline
  • Fluvoxamine
  • Paroxetine

8. Tonsillectomy

Preliminary, unpublished research suggests a tonsillectomy could benefit children with PANS/PANDAS.  There was a literature review in 2018 which showed that the benefits were not clear.²² The authors suggested reserving tonsillectomy for children with antibiotic-resistant PANDAS.

A tonsillectomy’s effectiveness may be because the tonsils can house harmful infectious agents and elevated levels of TH17 cells, which seem to have a role in PANS/PANDAS.²³

9. Anti-Inflammatories

Anti-inflammatory drugs like naproxen or ibuprofen can help children with inflammation-related symptoms or inflammatory side effects of other PANS/PANDAS treatments.

How these drugs help is unclear, and there can be unwanted side effects. They’re not great for a long-term approach. Some natural anti-inflammatories, like curcumin (the active ingredient in turmeric), seem to help as well as ibuprofen in our experience.

10. Antifungals

Seldom will physicians check for yeast infection in children exhibiting symptoms of PANS/PANDAS. However, a small but significant portion of reported PANS/PANDAS cases are accompanied by yeast infections or yeast overgrowth.

If yeast (Candida albicans) infection is involved, antifungals can prove effective.

11. Antihistamines

Closely supervised administration of antihistamines can help PANS/PANDAS patients in three ways:

  • Reducing inflammation
  • Boost the immune system
  • May help induce sleep

Some children may react poorly to antihistamines, becoming agitated instead of sleepy, so close monitoring is in order.

12. Vitamin D

According to more recent research, vitamin D deficiency appears significantly more in PANDAS patients than in control groups.²⁴

A 2016 study “supports the hypothesis that an association between vitamin D metabolism and PANDAS-related OCD exists.”

If supplemental vitamin D is needed it is important to have a blood level to follow since everyone requires different amounts to maintain a desirable blood level. There are also genetic differences in how people absorb vitamin D.

If you suspect that your child might have PANS or PANDAS you can book an appointment by clicking  here , or please call us at (317) 989-8463, Monday-Thursday, from 8AM – 5PM Eastern time.

We are located in Carmel, Indiana. We have extensive experience with PANS/PANDAS patients and helped our own daughter recover when she developed PANS several years ago.

In Summary

PANS/PANDAS is a rare but serious autoimmune disorder that occurs in children ages three to 13 where the child’s immune response attacks part of the brain.

  • PANDAS stands for “pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections”. This is only when Group A strep bacteria precedes symptoms.
  • PANS stands for “pediatric autoimmune neuropsychiatric disorders” or “pediatric acute-onset neuropsychiatric syndrome”. PANS is broader and more vague in scope.

Boys are twice as likely to develop PANS/PANDAS than girls.

Some common symptoms of PANS/PANDAS include:

  • Sudden onset OCD (or eating disorder)
  • Anxiety
  • Behavioral regression
  • Aggressive/irritable behavior
  • Deteriorated motor skills
  • Sensitivity to light, sound, smell, and taste
  • Insomnia, night terrors
  • Bedwetting
  • Poor performance in school

There are various treatment options:

  • IV immunoglobulin (“IVIG”)
  • Plasmapheresis (also called plasma exchange or therapeutic apheresis)
  • Corticosteroids
  • Antibiotics
  • Cognitive behavioral therapy
  • SSRIs
  • Tonsillectomy
  • Anti-inflammatories, antihistamines, antifungals
  • Vitamin D (if there is a deficiency)

You can book an appointment by clicking  here . We are also happy to speak with you at (317) 989-8463, Monday-Thursday, from 8AM – 5PM Eastern time.

Sources:
1
https://www.neuroscientificallychallenged.com/blog/what-are-basal-ganglia
2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340632/
3 https://www.yourgenome.org/facts/what-are-streptococcal-infections
4 https://www.cdc.gov/groupastrep/diseases-public/rheumatic-fever.html
5 https://www.semanticscholar.org/paper/From-Research-Subgroup-to-Clinical-Syndrome%3A-the-to-Swedo-Leckman/fddbf448ed32d6117e390fe788e40562e8710c54?p2df
6 http://pandasnetwork.org/statistics/
7 https://www.sciencedirect.com/topics/neuroscience/cytokine-receptors
8 https://www.ncbi.nlm.nih.gov/books/NBK333433/
9 https://www.nimh.nih.gov/health/topics/eating-disorders/index.shtml
10 http://www.ldonline.org/article/12770/
11 https://tourette.org/about-tourette/overview/what-is-tourette/
12 https://www.ninds.nih.gov/Disorders/All-Disorders/Sydenham-Chorea-Information-Page
13 https://www.sleepfoundation.org/night-terrors
14 https://pubmed.ncbi.nlm.nih.gov/11929370/
15 https://www.thermofisher.com/us/en/home/life-science/antibodies/antibodies-learning-center/antibodies-resource-library/antibody-methods/introduction-immunoglobulins.html
16 https://pandasweb.nl/cfsystem/userData/literatuur/1317330723__document__therapeutic-pf-and-ivig-for-ocd-and-tic-disorders-perlmutter-1999.pdf
17 https://pubmed.ncbi.nlm.nih.gov/29722936/
18 https://www.nccih.nih.gov/health/probiotics-what-you-need-to-know
19 https://labtestsonline.org/tests/albumin
20 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340509/
21 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5826468/
22 https://www.hindawi.com/journals/ijoto/2018/2681304/#B43
23 https://www.thermofisher.com/us/en/home/life-science/cell-analysis/cell-analysis-learning-center/immunology-at-work/t-helper-17-cell-overview.html
24 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5353234/

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