The following is based on the consensus by experts on PANS/PANDAS 2017, but it also includes my commentaries as well. So the following pages will provide you with a snapshot of conventional recommendations along with more holistic approaches.
PANDAS DEFINITION:
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection in youth. This condition is a sudden onset of OCD (obsessive compulsive disorder) and or Tics (involuntary movement disorder) in childhood, following a strep infection (Note: not every child has classical symptoms of strep infection). The symptoms are dramatic and can include motor and vocal tics, obsessions and compulsions. The hypothesis is that PANDAS arises from the development of brain-reactive autoantibodies after a Group A Streptococcal Infection. PANDAS may meet criteria for PANS and can be considered to part of the PANS disorders.
PANS DEFINITION:
Pediatric Acute onset Neuropsychiatric Syndrome is a sudden onset of OCD or Food Restriction (Anorexia) plus 2 out of the 7 comorbid conditions:
Anxiety
Depression or emotional lability
Irritability
Aggression or severe opposition
Deterioration of school performance or ADHD
Sensory or motor abnormalities, ie frequency of urination, enuresis, sleep disorder
Memory or cognitive deficits
Trigger for PANS is usually infectious or inflammatory.
Diagnosis is the Key to minimize the severity of symptoms, but the treatment should begin simultaneously.
Testing for various different infectious organisms: Strep via blood and throat culture, Mycoplasma, EBV, CMV, Lyme, Varicella, Measles, Mumps, Rubella, HHV6, HSV1/2, Environmental Toxins like Heavy Metals (urine porphyrins, serum lead, mercury, aluminum), mold (mycotoxins and allergies), Food and Inhalant/Chemical allergies (basically anything that causes inflammation).
Differential Diagnosis: brain injury, stroke, concussion, M.S.
CONVENTIONAL TREATMENT:
Psychological, Behavioural, Pharmacological
HOLISTIC TREATMENTS:
Diet (GFCF,Sugar/Corn/Soy F, Organic, Non GMO, LDA/LDI, Ozone, Heavy Metal Detoxification (if warranted), LDN, natural anxiety/depression/sleep supplements; B12 Shots, Liver/Lymphatic Detox supplements; Ionic Foot Bath, CBD injectable and oral, correcting nutritional deficiencies, like Vitamin D, Coq10, Omega-3 Fats, MTHFR mutations, hormonal deficiencies like thyroid, cortisol.
These interventions, may require modification and adjustment as the symptoms of PANS/PANDAS can change during the course of the illness. So the treatment must be individualized. Some patients can present with very mild symptoms and some with very severe symptoms that will require a lot of interventions.
Antibiotics and Immune based treatments can often have dramatic improvements. But in some cases, they fail or the child will now have another new symptom. So the course for each child is variable.
Mainstays of management are Education, Supportive, Behavioural Therapies, Psychoactive Medications (and Holistic Treatments mentioned on page one).
SAFETY:
in the case of severe depression, anxiety, aggression, or impulsivity, this needs to be properly assessed and managed. A comprehensive history is paramount. If the patient is suicidal or in imminent danger of self harm or harm to others, then crisis management must be instituted with hospitalization for these dangerous behaviours. In these cases, the parents should insist on remaining in the hospital with the child.
SCHOOL ACCOMODATION:
if there is ADHD, OCD, Anxiety, Tics, Frequent Urination, Poor Cognition or Stamina, Memory Issues, Math Processing Issues, Frequent Absences,
A 504 plan with School or IEP (individual education program) must be requested or insisted upon by the parent. It should be written with the most difficult days in mind (remember, the course can be waxing and waning).
General: excusing the absences and not requiring make up assignments/tests
Separation Anxiety: parent should be allowed to be in the class (helping out)
OCD: accomodations ie typed up homework instead of writing and erasing repeatedly;
Audio Books instead of regular books to avoid reading and re-reading.
Urine Frequency: not needing permission to leave for bathroom each time
Dysgraphia: for poor handwriting, have a note taker in class, dictating tests, and
Homework, enlargement of worksheets.
Math Difficulties: using a calculator, times tables, tutor
Slowed Progress/Speed: decrease the number and length of assignments; extra time
For tests/in-class assignments
Poor Physical/Cognitive Stamina or pain: shorter school days, decreased academic load,
No PE
Note: When acute exacerbation is abated, these accomodations can be re-evaluated
FAMILY SUPPORT AND EDUCATION:
This can be a stressful time for the whole family. Often one parent needs to remain home to do round the clock child care, provide comfort for the child and co-ordinate with doctors and school. Parents need to understand its unpredictable nature and episodic variation. During times of explosive behaviours, ie rage, anxiety, severe ocd, and aggression, parents need to keep the child safe until the episode subsides. Other things to be done:
Minimize transitions/activities
Increase rest times
Decrease noxious sensory stimuli
Remove harmful objects
Once the episode is subsided, parents can resume normal parenting strategies.
There are national and regional support networks for parents (go online)
CBT:
Cognitive Behavioral Therapy: specifically ERP (Exposure/Response Prevention) and Minimizing family accomodations to OCD behaviors are among the most effective strategies based on pilot studies and should be started right away. The child can learn lifelong tools for managing the ocd/anxiety/life stressors.
MANAGEMENT OF SPECIFIC SYMPTOMS
OCD: CBT/ERP; Parent Management Training (PMT), Medications, (Holistic Treatments, see page one). PMT involves learning to set clear limits, not to participate in child’s behaviors/avoidance rituals. Reward desired behaviors. PMT is useful especially in the beginning when child may not be ready for CBT
SSRI medications are the preferred pharmacological treatment. The following are FDA approved in Pediatric OCD: Prozac, Zoloft, Fluvox, Anafranil. Start at low doses and go up slowly if needed as these medications can have side effects. In the case of incapacitating OCD, antipsychotic medications such as risperidone, abilify can be prescribed. (I have experience using the risperidone and it is generally well tolerated in kids should they absolutely need it).
Food Restriction: Sudden onset of this problem fulfills the 1st criteria for PANS. The child should be medically evaluated in order to rule out other conditions such as esophageal eosinophilia, dysphagia, and nausea. If there is medical instability then hospitalization may be necessary. The focus in non acute episodes is adequate hydration and nutrition while trying to treat the inflammation. ERP in cases of anxiety/ocd with food. Occupational Therapy (OT) can help with this too. (GFCF diet and B12 shots can surprisingly improve the appetite and picky eating).
TICS:
70% of PANS/PANDAS patients present with this. The more severely affected the child is, the more severe the self esteem issues the child has. Behavioral Therapies CBT, ERT, and pharmacotherapies like guanfacine and clonidine (alpha 2 adrenergics) are helpful especially if there is ADHD. If severe episodes, antipsychotics can be used briefly. (Holistic treatments see page one).
IRRITABILITY/AGGRESSION:
Is among the most troubling in PANS/PANDAS patients. Mood lability, impulsive aggression, sensory sensitivities, irritability, fatigue, anxiety, cognitive changes can all last 45-60 minutes or more. Once the child is “back”, he/she will express remorse. During the episode, parents much minimize demands, provided adequate nutrition, and sleep. But distraction in the moment can be the most effective maneuver. Do not punish!
Benzodiazepines like lorazepam for irritability related to anxiety (active gaba, homeopathics, topical cbd lotion to the back of the neck or oral/injectable cbd)
Antipsychotics as needed briefly or continuous.
For aggression related to encephalitis: benadryl orally/injectible/; lorazepam orally/iv/injectable; antipsychotics.
ANXIETY:
Separation anxiety: accommodate the child during the episode. But return back to school and his/her bedroom when back to baseline. If the parent needs a break from the child, then there must be a way for the parent to be replaced with another caregiver to go into that space for the child. CBT/Benzodiazepines temporarily; benadryl, gabapentin, clonidine, ssri’s (holistic: see irritability section)
ADHD:
Typical classroom accommodations must be provided in these cases by the teacher/school. Seating the child in a special area, permission to take breaks without asking, extended time for tests, tutors. Pharmacology: ritalin meds but must be aware that these meds can exacerbate or bring on TICS. Clonidine and guanfacine are not the treatment of choice for ADHD but in PANS/PANDAS, they can actually improve tics, sleep, and anxiety while helping with ADHD. (Holistic: diet, b12 shots, heavy metal detox, ozone, LDI/LDA)
Sleep:
Problem could be a function of OCD/Anxiety, enuresis (urine accidents), nightmares, temperature dysregulation, sleep apnea, REM sleep behavior disorders (this latter could be a side effect of ssri’s).
Good sleep hygiene includes:
Regular sleep and wake up time
Consistent short, bedtime routines
Comfortable sleep environment
No caffeine in evenings, wind down activities not wind up
No screen/electronics 2 hours before bed
Melatonic, benadryl, clonidine, trazodone, ambien (holistic: melatonic, active gaba, homeopathics, ldi/lda)
DEPRESSION:
If its mild, then supportive interventions: individual or family counseling
Severe: psychotherapy with medications ssri’s or buproprione: start low, watch for side effects: worsening mood, irritability, agitation, hyperactivity, suicidal ideations. If family history of bipolar, be cautious with above listed meds, as they can bring on mania.
PSYCHOSIS:
25% of PANS/PANDAS patients have auditory, olfactory or visual hallucinations. If it is enough to disrupt the life of the patient, then antipsychotic meds for short duration. (the episode is not long lasting usually)
PAIN:
Common comorbidity but often not vocalized by the patient. Inflammatory arthritis which can get worse if not treated early. Widespread pain can be associated with other sensitivities, ie to light,sound, and smells, abdominal pain, headaches, muscle aches, fatigue, brain fog, depression. The child may need evaluation by Rheumatologist, Physical or Occupational Therapy. (holistic approach: diet, supplements, detox, anti inflammatories)
IMMUNOMODULATORY THERAPIES: PART II of the Paper
If the child is mildly affected, then tincture of time, with CBT, Supportive Therapy (Holistic Approaches: see page one esp Low dose naltrexone). If it persists then NSAIDS like ibuprofen or a short course of oral steroids.
If the child is moderate-severe in PANS/PANDAS, then oral or IV steroids. IVIG is often a preferred treatment.
If the child is severe with life threatening symptoms: Therapeutic Plasmapheresis is the 1st Line alone or in combination with IVIG, high dose IV steroids or rituximab.
Flares of PANS/PANDAS is a VIRAL TRIGGER (ozone therapy kills viruses and bacteria without side effects).
Prevention of Infections: Part III of the Paper
vaccinations and vitamin D (Holistic: see page one)
REFERENCES:
Clinical management of Pediatric Acute-Onset Neuropsychiatric Syndrome.
Part I-Psychiatric and Behavioral Interventions. Margo Thienemann md, et al.
Journal of child and adolescent psychopharmacology, 2017
Clinical management of Pediatric Acute-Onset Neuropsychiatric Syndrome
Part II- Use of Immunomodulatory Therapies. Jennifer Frankovich md, et al.
Journal of child and adolescent psychopharmacology, 2017
Clinical management of Pediatric Acute-Onset Neuropsychiatric Syndrome
Part II- Treatment and Prevention of Infections. Michael S. Cooperstock md, mph, et al.
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