By: Gabriella True, President, New England PANS PANDAS Association
Imagine your happy, healthy child who likes to go to school, plays with toys, runs off to play with friends, joins a sports team, participates in many activities suddenly won’t do any of it. Out of nowhere, your child is now paralyzed with anxiety, filled with obsessive thoughts and compulsive actions, can’t leave your side, crying out of nowhere, acting like a much younger child, raging for hours of the day, having tics, wetting their bed, unable to write legibly and so on. This is what Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) can look like. This is the reality, 1 in 200 families face.
Consider PANS/PANDAS if a child has a sudden onset of OCD and/or severe eating restrictions along with at least two of the following neuropsychiatric issues: 1-Severe Anxiety/Separation Anxiety. 2-Emotional Lability, Depression. 3-Irritability, Aggression, Rage. 4-Behavioral/Developmental Regression. 5-Deterioration in School Performance. 6-Sensory/Motor Abnormalities, Tics. 7-Somatic changes: Sleep Disturbances, Enuresis, Urinary Frequency. Any child who develops a cluster of these symptoms should have a full workup for PANS/PANDAS.
PANS has several disease mechanisms and etiologies including that it is a post-infectious autoimmune and neuroinflammatory disorder often with an encephalitic onset that causes an immune reaction to one of a number of physiological stressors such as common infections like Group A Streptococcal (GAS), Mycoplasma pneumonia, Lyme, influenza, sinus & upper respiratory infections along with non-infectious triggers. Other mechanisms and etiologies include endocrine, metabolic, and neurological disorders. PANDAS is a subset of PANS and requires a temporal relationship with GAS infections. While strep is the most studied, we know there are multiple triggers that can cause inflammation in certain areas of the brain and as a result PANS symptoms. Some children can have an encephalitic onset of symptoms while others can have a less severe presentation. If left untreated, no matter the initial severity, PANS can progress into a worse and chronic state.
PANS/PANDAS symptoms are wide-ranging and one should not assume they know exactly what they look like in one child to the next. Symptom severity, symptom mix, and presentation can vary from child to child and from flare to flare. Children with PANS with severe food restrictions are not merely being picky eaters or have body dysmorphia issues but can have true fears of choking, contamination, along with issues swallowing and with texture. It is important to note that OCD is not just hand washing, stepping over lines or being neat; obsessive thoughts are not always easy to identify especially in a child who is not able express or fearful of sharing these thoughts. Separation anxiety may be so severe that a parent may not even be able to be more than a few feet away and the child insists on sleeping in their parents’ bed. As a child gets older, they may be able to separate themselves from their parents but can be too fearful to leave the house without much stress. Handwriting can go from neat to illegible. Some can no longer do arithmetic while in a flare. Children can have severe rages then not remember what triggered them or exactly what happened after. It is important to know these children are sick and behaviors are not choice based.
PANS/PANDAS is a clinical diagnosis and one of exclusion based on history and examination, not simply one or two laboratory tests. There is no single test. PANS diagnosis does not require a known trigger but determining out the trigger(s) is helpful in guiding treatment. Even though PANDAS diagnosis is triggered by strep, one test alone cannot determine whether a patient has PANDAS or not.
Treatment of PANS/PANDAS focuses on treating this cluster of symptoms as a medical disorder while supporting any psychiatric care needs. Recently, the PANDAS/PANS Collaborative Consortium, a network of physicians practicing from renowned medical institutions published PANS/PANDAS Treatment Guidelines. Treatment entails three complementary modes of treatment, which address psychiatric symptoms, the source of inflammation and the immune system.
1) Remove the source of the neuroinflammation with antimicrobial therapies such as antibiotics and anti-virals.
2) Treat disordered immune system with immune modulating and/or anti-inflammatory therapies.
3) Treat symptoms with psychoactive medications if needed, typically starting at subclinical doses. Provide supportive interventions and psychotherapies as needed to provide relief of symptoms.
Severity and course of PANS symptoms, along with lab testing and physical exam determine the individualized therapies of a patient’s treatment regimen. Doctors should continually reevaluate and adjust treatments as necessary. There is no one size fits all protocol.
Holistic protocols are often incorporated into the standard mainstream medicine guidelines. These natural approaches are typically chosen to work along the same three guiding principles of the Treatment Guidelines: treating the symptoms, treating the source of inflammation and treating the immune system and neuroinflammation.
Parents need to educate themselves on this disorder; they are their child’s strongest advocates. The medical community is still in its infancy in becoming well versed in these conditions, and many doctors mistake these symptoms for psychiatric illnesses. Children continue to be misdiagnosed and treated with only psychotropic drugs instead of treating the root cause.
Ultimately, I encourage everyone who sees a new occurrence of OCD and/or eating restrictions along with a cluster of neuropsychiatric symptoms to not ignore them and to not chalk them up to being just a phase or because your uncle acted the same way or because a doctor has already diagnosed them with Autism, ADHD or some other disorder. Trust your gut and find answers and solutions. There is lots of hope for recovery. It might not happen overnight or within a couple of years but it can happen. There is help out there. You are not alone in this. Children can get better.
PANS is a clinical condition defined by the abrupt onset of OCD and/or severe eating restrictions and at least two concurrent neuropsychiatric Symptoms: 1-Anxiety/Separation Anxiety. 2-Emotional Lability, Depression. 3-Irritability, Aggression, Rage. 4-Behavioral/Developmental Regression. 5-Deterioration in School Performance. 6-Sensory/Motor Abnormalities, Tics. 7-Somatic Symptoms, Sleep Disturbances, Enuresis, Urinary Frequency. Any child that develops a cluster of these symptoms should have a full workup for PANS/PANDAS.