A once, happy and engaged child is plagued overnight by a mysterious illness whereby the child suddenly develops severe obsessions and compulsions to the point where even eating becomes a problem with severe food restriction. Tics from out of nowhere emerge and are constant. Separation anxiety appears and is so pronounced that even going to school becomes almost impossible. A once bright and interactive child has now regressed cognitively with behavioral and personality changes that make this child almost unrecognizable. It is almost as if a completely different kid appeared. Though the face and body are the same but everything else seems completely foreign. The worst part is that despite the child’s frustration and fear and the family disruptions that ensue, the doctors are unable to explain what is happening (other than to suggest the emergence of a psychiatric problem requiring strong psychiatric medications or perhaps an inpatient psychiatric hospital stay). Many children go through a similar scenario and have a condition called PANS or a subset called PANDAS.
Read the story below of Jordan Moore reported in the Journal Scene (Summerville, SC).
It was in the 1990s that a pediatrician (Dr. Susan Swedo) while researching childhood OCD with a team of researchers first identified a subset of children with OCD. Their symptoms were triggered by antibodies attacking the brain produced by streptococcal (group A beta-hemolytic streptococcal [GABHS]) infections. The term PANDAS was introduced describe this condition and then later PANS for a broader condition also presenting with acute neuropsychiatric symptoms but not related to strep (see below).
PANS/PANDAS cause a lot of suffering and disruption for families affected. Symptoms (flares) occur intermittently like in other neurological disorders (e.g. epilepsy and migraine) and can disrupt behavior and cognitive functions as in some neurological disorders (autism and Alzheimer’s).
1 in 200 Children May Have PANDAS/PANS
Up to 25 percent of children diagnosed with OCD and tic disorders such as Tourette Syndrome may have PANDAS
To optimize brain function for anyone suffering from neurological challenges to restore hope, enhance wellness, and maximize quality of life.
- PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
- PANS: Pediatric Acute-onset Neuropsychiatric Syndrome
- PITANDS: Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders
- AE: Autoimmune Encephalitis
(All five diagnostic criteria must be met for a clinical diagnosis of):
1) Presence of obsessive-compulsive disorder (OCD) or a tic disorder
2) Prepubertal symptom onset
3) Acute symptom onset and episodic (relapsing-remitting) course
4) Temporal association between Group A streptococcal infection and symptom onset/exacerbations
5) Associated with neurological abnormalities, (particularly motoric hyperactivity and choreiform movements)
- Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
- Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories: Anxiety Emotional lability and/or depression, Irritability, aggression and/or severely oppositional behaviors, Behavioral (developmental) regression, Deterioration in school performance, Sensory or motor abnormalities, Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
- Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham’s chorea, systemic lupus erythematosus, Tourette disorder or others.
BRC offers comprehensive yet customized evaluation:
- General labs (e.g. chemistries, blood count, etc.)
- Infectious disease labs to rule out various microbial triggers (e.g. strep, mycoplasma, EBV, Coxsackie, Lyme and co-infections etc.)
- Immunological (e.g. immunoglobins, complements, etc.)
- Markers of inflammation
- Autoimmune (including brain autoantibodies)
- Comprehensive digestive stool analysis
- Nutritional deficiencies testing
- Testing for food and environmental toxicities, sensitivities and allergies
- Genetic testing (including pharmacogenetic testing, Gene SNPs, and WES/WGS)
- Brain mapping
- When needed additional neurodiagnostic testing including
- EEG (routine or prolonged VEGG)
- Lumbar puncture (with manometry, comprehensive autoimmune and infectious encephalitis panels, and other CSF studies)
- Detailed neurometabolic testing (blood, urine and spinal fluid)
- Neuroimaging (e.g. Brain MRI)
As of 2021, the Brain Restoration Clinic is offering specialized PANS/PANDAS Group Clinics. Patients suspected of having PANS/PANDAS, those recently diagnosed or patients that have been struggling with this condition for a long time are invited to attend. This clinical program will contain not only interactive group education sessions but also elements of individualized patient care through health coaching and a customized review of patient history for appropriate individualized lab testing and treatment (including management of acute flares). Participation in the review of each patient medical record and assessment for appropriate labs and individualized treatment recommendations will be conducted by a team of providers:
- Pediatric neurologist
- Health coaches
- Lifestyle consultant
- These above staff attends each group visit.
- Extra daily guidance and support is also provided each day via email from a patient care platform that each patient will be able to access via the web or a Mobile App.
- Access to a patient portal for communication will also be provided
BRAIN RESTORATION TREATMENT FOR PANS/PANDAS
- Antibiotics (we use antibiotics for PANS/PANDAS flares when necessary but are very cautious with overuse – see below regarding the ‘3 Brains’
- Anti-inflammatory agents (e.g. NSAIDS and Steroids – short term burst- when indicated for flares)
- Behavior Modifying Medications
- Immune-regulating agents
- BRC plant-based agents and high-quality nutraceuticals
- Behavioral Management (e.g. cognitive behavioral therapies).
- IVIG (this is reserved for severe cases after other options have been explored – we work with home IVIG agencies and the insurance companies)
- Neuromodulation technologies (for hard to treat OCD, anxiety and mood disorders)
- Support and Educational-Based services
- BRC Health Coaching Services
***After Hour Services Available for our PANS/PANDAS Patients
*** We collaborate with your primary care physicians, other specialists/members of the team
At BRC, we use a variety of tools including:
- Rational use of pharmaceuticals (that we deem safe based on pharmacogenetic or DNA testing) Click here
- Nutraceuticals (dietary supplements) including some of our BRC supplements e.g. Total Brain Restoration that supports total brain health and recall ability, provides nutrients that support antioxidant and mitochondrial mechanisms as well as protein and amino acids for neurotransmitter production.
- Electroceuticals (cutting edge therapeutic agents which act by targeting the neural circuits of organs and modulating them, that is providing neuromodulation)
To better understand the above, see the following links:
- Jean-Ronel Corbier- From Nutrition to Neuromodulation: How to Restore Brain Function in Autism at AutismOne Conference
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