PANS/PANDAS is medical in its cause but neurological and psychiatric in its symptoms.
This is a paradigm shift and a challenge for providers to link the medical history with a sudden change from the baseline of functioning to the acute onset of psychiatric symptoms in a child, especially with the frequent lack of coordination between medical and mental health providers. It truly takes a cross-discipline collaborative effort to identify and most effectively treat PANS/PANDAS. As mental health clinicians, we do not often have the opportunity to be on the prevention side of disorders; with an increase of PANS/PANDAS knowledgeable medical and mental health treatment providers, we can do just that! –Christine Amabile, LCSW, ASPIRE Provider Outreach & School Education Committees
Links to sections within Behavioral Health
- If a patient has a sudden onset or worsening of Obsessive-Compulsive Symptoms and/or Severe Eating Restrictions along with multiple cognitive, behavioral, or neurological symptoms
- If there is a sudden change from baseline of functioning and acute onset psychiatric symptoms in a child
- When a patient has multiple cognitive, behavioral, or neurological diagnoses including ADD, Autism, ODD, Anxiety, Depression, OCD, Tics
- In all cases refer the patient to PCP for lab work, not just a strep swab.
With PANS PANDAS, the parent is often the driving force to get help in returning their child to normal functioning. Be a partner with the family. The majority of parents are traumatized and need compassion. Providers must validate the parent and child’s experience. It is terrifying and stressful for families to watch these symptoms suddenly occur. They are often at a complete loss about what it is or how to treat it. Then they are too often minimized, dismissed, or rejected by the very medical community that you turn to for help. Informed parents know their children and often cannot convince doctors to acknowledge or treat PANS PANDAS. Have the research and resources ready to assist families in combating any barriers blocking treatment and advocate for the child’s needs.
- Be informed, able to recognize symptoms, able to connect medical history with onset of neuropsychiatric symptoms
- Assist with differential diagnosis and rule out pre-existing mental health disorders (refer for required medical exams and labs)
- Partner with (and often inform) multidisciplinary treatment providers and assist to coordinate referrals to PANDAS knowledgeable physicians. Read about Team Approach Needed.
- Provide education to shocked and highly stressed parents, emphasize the need for quick medical interventions
- Educate families on PANS and its clinical course including the unpredictable episodic pattern
- Translate pertinent research information to parents and provide professional resources
- Validate, support, and advocate for parents with doctors, schools, insurance providers, and in the community
- Help identify supports for parents (formal and informal). Connect them with ASPIRE. Parents often feel isolated and live in constant fear of relapse. The caregiver burden is significant. Read more on Caregiver Burden – Caregiver Experience
- Arrange for aftercare when PTSD sets in. Parents are traumatized by the experience of their suddenly ill child and the lengthy course of searching for answers and proper medical care.
- Provide a sense of hope and much needed emotional support
- Collect thorough medical history, assess for ANY recent exposure to strep or illness (PANDAS symptoms often do not appear until several weeks-months after the triggering infection occurs). Parent-given history is often the most important diagnostic tool!
- Collect family history, including any psychiatric and autoimmune disorders
- Assess for acute onset of symptoms, typically so profound that most parents can report an exact date of the first onset!
- Assess for symptoms of anxiety, OCD, or tics (YBOCS Scale)
- Assess for a sudden academic decline, compare samples of handwriting
- Look for new urinary urge increase, bedwetting, or daytime accidents
- Look for new sleep disruptions, nightmares, terrors, need for co-sleeping with a parent
- Look for sudden food restrictions or changes in eating habits
- Assess for suicidal ideation
- Assess for new intrusive thoughts, unusual fears, and ritualistic behaviors
- Look for sudden dramatic changes in personality, emotions, or behaviors
- Assess for neurological abnormalities, choreiform movements, milkmaid handgrip, dilated pupils, hyperalert affect
- Assess for new sensory issues
- Assess for new separation anxiety or school phobia
- Look for symptoms that come and go (emit remit pattern)
- Educate families on PANS PANDAS and therapies
- Provide information to diagnose and shape a treatment plan
- Provide symptomatic relief with therapy and/or psychoactive medicine
- Support stressed families
- Promote best practices to keep patient and family safe during episodes of impulsivity and/or rage
- Help facilitate important treatments
- 3 Complementary Modes of Treatment: PANS treatment is a three-pronged strategy; treat PANS symptomatically while treating inflammation, immune system, and infections.
- Prioritize treatments: Prioritize the behavioral, and psychiatric treatments based on which symptoms are the most immediately concerning, and creating the most interference.
- Individualize Treatment: Treatments must be individualized and will require adjustment; symptomology and severity differ per child and can differ from flare to flare.
- Low and Slow: Psychiatric medications, generally, should be implemented with a ‘‘start low & go slow’’ approach; beginning dosages for PANS are typically ¼ or less typical doses. Typically doses should be titrated up slowly as needed.
- Severity Dictates Treatment: Patients with mild to moderate symptoms may not require any pharmacological intervention, while those with more severe symptoms may require behavioral therapy, further education, and pharmacologic treatments.
- Review Treatments: Treatments should be reviewed periodically and adjusted as per symptom severity; symptoms can change during a flare and from flare to flare.
- Different Patients React Differently to Treatment: The disease trajectory and the efficacy of other treatments such as antibiotics, anti-inflammatories, and immunomodulators vary from patient to patient. Some patients react positively and quickly to medical interventions, while others experience less positive outcomes. Thus, mental health providers are advised to not always make quick changes with every symptom change.
Behavioral Interventions Overview
- Assess Severity: Assess the child on a symptom severity rating scale and use the published treatment recommendations to guide parents. Tracking/Rating Tools
- Track Symptoms: Help to track symptoms, interventions, medications, and assess responses. Tracking/Rating Tools
- CBT: Medical treatment alone may alleviate many symptoms and behaviors. Cognitive behavioral therapy (CBT) is helpful to provide support and cope with residual flares.
- When caregivers reinforce CBT in the home, it is the most effective treatment for pediatric OCD. Initiate CBT once intense exacerbation is stable, support parents in the meantime.
- Teach coping strategies to children and parents versus accommodating OCD. Provide psychoeducation on OCD and help the child understand the involved brain response and begin to confront anxiety.
- Short-term accommodation of the anxiety may be tolerable if medical interventions are working. The child should return to normal routines as soon as possible, once stable, to avoid establishing persistent negative behavior patterns.
- Parent Management Techniques (PMT): Often, the patient is not ready to undergo CBT therapy until medical treatment is well underway and produces favorable results. Thus, caregivers are encouraged to seek out the help of a CBT therapist immediately to learn how not to reinforce OCD rituals and other behaviors and set limits while reinforcing good habits.
- Stress Management: Teach stress management skills and self-care, address the grief, loss, and acceptance of the new normal of parenting/caregiving someone with PANS PANDAS.
- Unsafe Episodes: Therapists can assist caregivers in finding ways to reduce unsafe episodes, such as limiting transitions, sensory overload, stressful situations, too many expectations, etc. During unsafe episodes, due to compulsions and rages. The primary goal of any intervention is to keep the patient safe. Once that episode is over, caregivers are encouraged to resume the tools learned from the therapists. Help develop an emergency plan.
- Behavioral interventions including de-escalation, emotion regulation, anxiety management, redirection, distraction, thought replacement, positive reinforcement, setting clear limits and consequences, establishing reward systems, habit reversal, exposure and response prevention (ERP) techniques can be useful (discipline the illness symptoms, not the patient!)
This chart provides an overview of behavioral interventions for PANS PANDAS. For more detailed information on the three-pronged treatment approach to treating PANS PANDAS and providing symptomatic relief, including behavioral interventions for specific symptoms including Cognitive Behavior Therapy (CBT)/ Exposure Response Prevention (ERP) and using psychoactive medications, please see:
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