Updated: Oct 3, 2020
One of our most vulnerable populations are children, and understanding how to see them, take care of them and treat them in all areas of mental health care is of urgent necessity, especially now. In conventional healthcare, diagnostic testing for children is conducted in a similar manner to that of adults: address symptoms, diagnose a condition, prescribe, and treat.
The story gets much more complicated when we talk about complex neuropsychiatric illness in children and teens and in these last years the incidence of these complex illnesses has been growing dramatically. Novel prevention and treatment strategies are so needed. It’s especially complex when the disorder has unclear pathology and has so many different symptoms. This is the case with PANS and PANDAS.
What are PANS and PANDAS?
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. They are both autoimmune conditions induced by an infection that disrupts a child’s normal immune and neurological function, resulting in a multitude of neuropsychiatric symptoms that are difficult to treat.
PANS and PANDAS cause extremely pervasive neurologic, psychological, psychiatric, and behavioural symptoms, including:
Obsessive-compulsive disorder (OCD)
Sudden onset of motor tics
These symptoms can arise suddenly or insidiously and can mean that in some cases, personality changes can be of rapid onset. This can cause major stress for parents and caregivers, as their child may now be experiencing pervasive episodes of anxiety, food restrictions, emotional meltdowns, and is behaviourally challenging. Children tend to suffer not only physically, but socially as well, as their schoolwork and ability to engage in extracurricular activities diminish.
How does an integrative approach to treating PANS and PANDAS make a difference?
The cause of PANS and PANDAS is unknown, and misdiagnosis is common, but the field is currently considering evidence suggesting that the underlying pathology involves molecular mimicry due to strep infection. This is the phenomenon where immune cells target normal tissues for destruction due to an infectious agent triggering an attack. This is similar to rheumatic fever, for example.
In PANS and PANDAS, it is assumed that this response to streptococcal infection targets the basal ganglia, an area of the brain responsible for fine motor movements such as saccades and dexterity, as well as having a crucial position in the emotional regulation network. This theory partially explains the symptoms relating to emotional dysregulation and involuntary motor tics.
As the syndrome involves multiple domains of dysfunction, an integrative approach to treating PANS and PANDAS seems imperative, as no particular treatment alone is effective in ameliorating all symptoms associated with the disease. Behavior therapy targeting the OCD-like symptoms is particularly effective, as are parent education and skill-building using tools such as Dialectical Behavior Therapy. Standard first line of care are often pharmacologic interventions like selective serotonin reuptake inhibitors and more recently intravenous immunoglobulin (IVIg) is used to restore immune function. Neurologist Dr Suzanne Gazda is one of the pioneers in this movement spearheading IVIg. This method has been shown to be effective in 12 children with moderate to severe symptoms of PANS and PANDAS.
Is telemedicine therapy for PANS and PANDAS effective?
Fortunately, there are many treatment options available for targeting the primary OCD symptoms and disordered eating when other more invasive options are either unavailable or unattractive to patients and their families. Internet-delivered, family-based behavioral therapy has been shown to be effective in reducing early-onset OCD symptoms. Treatments that include intravenous immunoglobulin and cognitive-behavioral therapy, in tandem with targeted symptom treatments specific to each case, show greater improvement than either treatment option alone.
The fact that telehealth therapeutic treatments are effective offers so many opportunities for underserved families to support their children in mitigating the debilitating effects of PANS and PANDAS. Simultaneous treatments that target the physical, behavioural, and social deficits are particularly needed, especially considering each individual child’s unique clinical presentation. Psychopharmacological interventions may be particularly effective, however, it is recommended that initial dosage remain low, and that pharmacological treatments occur in tandem with CBT.
If you have a child or know someone with a child suffering from early-onset OCD with a lot of behavior dysregulation it may be beneficial to see a provider who is trained to recognize the symptomatology associated with PANS and PANDAS, as a misdiagnosis often means treatment becomes centered on prescribing psychiatric medications versus the integrated approach which is needed for treating PANS and PANDAS.
Children exhibiting symptoms of PANS and PANDAS require specialized treatment that targets multiple domains of the syndrome. Because of how frequently PANS and PANDAS are misdiagnosed, it is important to take advantage of the resources available online such as the PANDAS Physicians Directory.
Keeping innovative solutions like telehealth and CBT, DBT, targeted medications and IVIG at the forefront of treatment will be critical in treating this condition. Integrating these approaches with parent education, skill-building and behavioral coaching, we will be many steps closer to improving the lives of our children suffering from PANS and PANDAS.
This article is for information purposes only, and is not intended as a substitute for medical or psychological care.