Children suffering from PANDAS and PANS hold a special place in our hearts at Restorative. Not only because Dr. Kevin has helped many children with this syndrome, but also because his daughter likely suffered from it. If you have followed us for any length of time or heard us tell our story, you know that various members of the Turner family have struggled through debilitating symptoms. For many years we thought one of our daughters fell somewhere on the autism spectrum. Now, many years removed from these horrendous symptoms, we strongly believe that PANDAS/PANS was a significant piece of her struggle. If only we knew then what we know now!
What are PANDAS and PANS?
It is estimated that 1 in 200 children suffer from PANDAS/PANS. PANDAS and PANS are acronyms to describe closely related specific autoimmune conditions within the brain.
PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections
PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome
PANDAS and PANS are relatively new conditions in healthcare. In 1998, the term PANDAS was first used to described a series of symptoms that pediatrician Dr. Sue Swedo and her colleagues observed in their patients. PANDAS and PANS are conditions where there is an autoimmune attack against the basal ganglia portion of the brain. This means that the bodies immune system has a misguided attack on this portion of the brain. In both cases, there is a triggering event, either a streptococcal infection or another infection to cause this autoimmune response. PANDAS and PANS cases typically appear between the age of 2 until the onset of puberty, around age 12.
What is the Difference Between PANDAS and PANS?
While PANDAS was introduced in 1998 by Dr. Swedo, it wasn’t until 2012 that she introduced the term PANS. PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factor, or other possible triggers initiate this misguided immune response and inflammation within the brain. The difference between PANDAS and PANS comes down to what infection causes the triggering event. In PANDAS patients, it is always a streptococcal infection that causes the autoimmune response within the brain. Conversely, in PANS patients autoimmune attack against the brain can be triggered by various factors. These triggers might include an upper respiratory infection, influenza, chicken pox, Lyme disease, mycoplasma, toxic mold exposure, or other infections.
Symptoms Involved with PANDAS and PANS
Whether it be PANDAS or PANS, this autoimmune condition has a very specific set of symptoms including:
Abrupt onset of symptoms or an abrupt relapse into symptoms
Dramatic onset of Obsessive Compulsive Disorder (OCD)
Anxiety
Emotional instability
Aggressive and/or severely oppositional behavior
Tics
Head-banging
Frequent urination
Bed wetting
Trouble sleeping and/or night terrors
Joint pain
Changes in motor skills
Self destructive talk or behaviors
Decline in skill such as math or writing
Anorexia
What is the Difference Between Autism and PANDAS/PANS?
The differentiation can really be quite simple. In PANDAS/PANS patients, symptoms start abruptly. This acute onset of the symptom cluster involved with PANDAS/PANS is important to note.
However, in a child with autism, this abrupt onset of symptoms might be more difficult to see. It may look like an exasperation of symptoms and potentially some new ones in the PANDAS/PANS category.
How are PANDAS and PANS Diagnosed?
Even though a pediatrician acknowledged these conditions decades ago, there are many pediatricians today that will not recognize PANDAS/PANS and will even dismiss the parent’s concerns. If you find yourself in this situation, please do not despair! At our office, we can do various functional labs tests that show autoimmunity and inflammation within the brain. Based on the results, our doctors can determine whether or not a child has autoimmunity toward the brain. These test results, along with an extensive health history and symptom analysis can make a case for whether or not PANDAS or PANS is a part of their clinical presentation. In some clinics, practitioners diagnose these conditions based on symptoms alone. We prefer to be guided by objective functional lab testing.
How are PANDAS/PANS Treated?
Treating PANDAS and PANS can be a complex process, often needing input from various clinicians. Our doctors work with the patient to help facilitate wellness within the body by helping to remove the triggering infection, reducing inflammation within the brain, and modulating the immune response. These changes often will result in a patient having their symptoms ease and function restored. For an example of what we have seen, check out the testimonial of one family at the bottom of this page!
Sources
https://www.ncbi.nlm.nih.gov/m/pubmed/9464208/
https://www.longdom.org/open-access/from-research-subgroup-to-clinical-syndrome-modifying-the-pandas-criteria-to-describe-pans-pediatric-acute-onset-neuropsychiatr.pdf
https://www.nimh.nih.gov/health/publications/pandas/index.shtml
https://rarediseases.info.nih.gov/diseases/13087/pediatric-acute-onset-neuropsychiatric-syndrome
http://pandasnetwork.org
