Emilie Meyer
PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are autoimmune disorders that affect children. PANS and PANDAS cause inflammation in the brain, leading to severe OCD symptoms. While PANDAS is specifically triggered by a strep infection, PANS can be caused by other infections or non-infections. The symptoms of PANS and PANDAS can be distressing and debilitating, and they can come on rapidly or slowly over time. The good news is that PANS and PANDAS can be treated, and most children recover completely. However, symptoms can sometimes return, and the conditions can be difficult to diagnose and treat due to their rare and complex nature.
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What You'll Learn
PANS/PANDAS is curable
PANS/PANDAS is a rare and lesser-known disorder that affects children, causing them to exhibit sudden and intense symptoms of OCD and anxiety. It is characterised by an abrupt onset or worsening of OCD, tics, or both, and is usually associated with a preceding strep infection. While PANS/PANDAS can be cured, it may require a multi-disciplinary approach and ongoing vigilance to prevent relapses.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, while PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is a subcategory of PANS, specifically referring to cases where the onset of symptoms is linked to a strep infection. The most common cause of a severe onset of OCD and tics is a group A streptococcus ("strep") infection, such as strep throat or scarlet fever. However, PANS can also be triggered by other infections such as the flu, chickenpox, mycoplasma, or Lyme disease.
The underlying cause of PANS/PANDAS is believed to be a problem with the immune system's response to an infection. Instead of attacking the germs, the immune system mistakenly targets the basal ganglia region of the brain, leading to inflammation and subsequent neuropsychiatric symptoms. This results in dramatic changes in the child's personality, including OCD, anxiety, tics, personality changes, decline in academic abilities, sensory sensitivities, and restrictive eating, among other possible symptoms.
Treatment for PANS/PANDAS typically involves a combination of medication and therapy. Antibiotics are used to treat the underlying infection, while anti-inflammatories help to calm the immune system. Cognitive behavioural therapy (CBT) is also employed to address the OCD and other behavioural symptoms. In some cases, tonsillectomy has been considered as a treatment option, although the evidence for its effectiveness is still inconclusive.
While PANS/PANDAS can be cured, it is important to note that it may not be a simple or straightforward process. Early diagnosis and treatment are crucial to reducing the duration and intensity of symptoms and preventing potential long-term psychological and neurological issues. Relapses can occur, often triggered by subsequent infections or exposure to environmental substances. Therefore, ongoing monitoring and management are necessary to ensure the best outcomes for children with PANS/PANDAS.
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Symptoms can be sudden or gradual
PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) is characterised by the onset of OCD symptoms, tics, or eating disorders after an infection or other triggers to the immune system. The diagnostic guidelines for PANS specify the sudden onset of symptoms, and parents can often remember the exact day their child's behaviour changed. However, it's important to note that not all cases of PANS have an acute onset. In fact, one study found that about 8% of children with PANS had a gradual onset of symptoms. These children may be less likely to be diagnosed because they don't fit the typical diagnostic picture, and the connection between their behavioural changes and a previous infection or trigger may be more challenging to identify.
PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) is a subset of PANS. Children with PANDAS have a very sudden onset or worsening of symptoms, followed by a slow, gradual improvement. PANDAS is diagnosed when there is a close relationship between the abrupt onset or worsening of OCD, tics, or both, and a strep infection. The symptoms of OCD or tic disorders suddenly become worse following a strep infection and can include motor or vocal tics, obsessions, compulsions, or both. In addition, children may experience anxiety attacks, mood swings, irritability, or show concerns about separating from their parents or loved ones.
The symptoms of PANS and PANDAS can be sudden or gradual, and they can also vary in severity and duration. While some children experience dramatic changes almost overnight, others may have a more gradual onset of symptoms. It's important to note that PANS and PANDAS are episodic illnesses, meaning symptoms can go away for a while after an infection is treated but can return during a flare-up or relapse. These relapses usually occur when a child is exposed to another virus, strep throat, or environmental substances such as mould or allergens. Symptoms may increase in severity and duration with each episode, lasting for months or even years and progressively worsening over time.
The sudden or gradual nature of symptoms in PANS and PANDAS can impact diagnosis and treatment. In cases of sudden onset, parents can more easily identify a specific trigger or infection that caused their child's symptoms to change. This knowledge can help guide treatment and potentially prevent future flare-ups. However, in cases of gradual onset, identifying the specific triggers or infections may be more challenging, making diagnosis and treatment more complex.
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Treatment options
PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly in young children, accompanied by other confusing and distressing symptoms. PANDAS is a subgroup of PANS. The symptoms of PANS and PANDAS can vary widely from child to child and can include a combination of psychological and neurological conditions.
PANS and PANDAS are complex conditions with a wide range of symptoms, and there are various treatment options available. The three main approaches are:
- Biological treatments: Antibiotics can help control or reduce symptoms of PANDAS (including OCD, anxiety, depression, and tics). They are also used to eradicate the underlying strep infection and prevent relapses.
- Psychiatric treatments: Cognitive behavioural therapy (CBT) can help manage psychiatric symptoms and provide children with coping skills.
- Immunological treatments: Intravenous immunoglobulin (IVIG) therapy addresses the underlying infection and autoimmune reaction that causes PANDAS.
Other treatment options include:
- Corticosteroids: These can help to reduce inflammation caused by the autoimmune response.
- Anti-inflammatories: These can be beneficial in controlling inflammation caused by the autoimmune response.
- Psychotropic medications: These should be selected carefully, as drugs that activate the central nervous system (such as some SSRIs) often produce more side effects.
- Habit reversal training: This can help decrease the frequency of tics and provide children with coping skills.
- Support groups: Talking to other families who are experiencing the same issues can help parents and caregivers feel less isolated and access new coping strategies.
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Misdiagnosis is common
The abrupt onset of OCD in PANS and PANDAS cases has also been known as childhood acute neuropsychiatric symptoms (CANS), pediatric infection-triggered autoimmune neuropsychiatric disorders (PITANDS), and pediatric autoimmune neuropsychiatric disorder associated with strep (PANDAS). The medical community has failed to come to a consensus on the etiology or definition of this disorder, leaving clinicians and parents at a loss.
PANS was only recently discovered and recognized, and many children with PANS/PANDAS are often misdiagnosed and treated with psychotropic drugs to manage their symptoms. The conventional medicine approach fails to resolve the root underlying cause of their illness. If they do realize it is PANS/PANDAS, most doctors just focus on the Strep trigger, treating children with antibiotics to combat the strep infection.
PANDAS is also often misdiagnosed because many children with PANDAS don't present with classic strep signs such as a sore throat, fever, headache, and stomach-ache. Strep infection can also infect other areas of the body, such as the anus. If children aren’t swabbed thoroughly or in the right places, an infection might be missed. In addition to the infection not always showing up in the expected ways, rapid strep tests miss 15%-20% of active infections and blood titers (ASO and Anti-DNASE B) tests have a false-negative rate of nearly 40%.
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Relapses and remission
PANS (pediatric acute neuropsychiatric syndrome) and PANDAS (pediatric acute-onset neuropsychiatric syndrome) are episodic illnesses, meaning they are relapsing-remitting disorders. Symptoms can disappear for extended periods and then reappear, stimulated by exposure to strep throat, another virus, or some other bacteria. The symptoms may get increasingly severe with each recurrence and last longer than the previous episode.
Relapses usually occur when a child is exposed to another virus, another case of strep throat, or an environmental substance such as mold or allergens. Symptoms may increase in severity with each episode and can last for months or even years. A flare-up does not last forever, and symptoms do eventually subside for most patients.
PANDAS is likely to return if your child gets strep again or is exposed to the germ. To help your child stay healthy, teach them good hygiene habits, such as washing their hands frequently, changing toothbrushes often, and staying away from sick people. Your whole family may need to get tested for strep to make sure no one is carrying the bacteria. Your pediatrician may prescribe long-term antibiotics to prevent new strep infections.
Treatment for PANS and PANDAS usually involves medication and therapy. Antibiotics are used to treat the underlying strep infection, and it usually takes a week or two, although some children improve within days. Anti-inflammatories can also be used to calm the immune system, and your child may be given a steroid pill for several days. Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and Motrin may also help.
Intravenous immunoglobulin (IVIG) replacement therapy, a therapeutic exchange of blood plasma, may be used for children who get no relief from other treatments. IVIG is costly, and most insurance does not cover the procedure.
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Frequently asked questions
Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is an autoimmune disorder that causes inflammation in the brain. PANS is often triggered by an infection, most commonly a strep infection, but can also be caused by non-infections.
The symptoms of PANS vary from child to child, but the onset is often abrupt and dramatic. Symptoms include:
- Constant reassurance
- Obsession with handwashing or food
- Anxiety
- Aggression
- Defiance
- Inappropriate laughter or crying
- Sleep problems
- Bedwetting
- Nightmares
- Obsessive-compulsive behaviours
- Repetitive behaviours
- Uncontrollable body movements
- Panic attacks
PANS is considered a relapsing-remitting disorder, meaning symptoms can be worse some of the time (relapse) and improved or gone at other times (remission). Symptoms can last for a few days or weeks and may go away, but they can also last for months or years and progressively worsen over time. Treatment for PANS can help, and most children with PANS recover completely.
