Today marks PANDAS/PANS Awareness Day.
“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) are devastating syndromes that are likely as prevalent as Pediatric Cancer and Pediatric Diabetes.”, the PANDAS Network states.
Strep, walking pneumonia, viruses, Lyme, and other infections can trigger an autoimmune reaction resulting in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing isms such as:
- personality changes,
- decline in math and handwriting abilities,
- sensory sensitivities,
- and more.
Statistics & Advisors
According to the CDC, “It is estimated that 13 -20 percent of children living in the United States (up to 1 out of 5 children) experience a mental disorder in a given year.” (1)
A conservative estimate for the prevalence of PANDAS/PANS is 1 in 200 children in the U.S. alone. Discover how the PANDAS Network arrived at these numbers.
It is imperative to determine the root cause of the symptoms mentioned above. If the symptoms are a result of PANDAS/PANS, a child has the potential to be treated and relieved of symptoms.
A few years back, we interviewed Diana Pohlman, who at the time was the President of PANDAS Network. Pohlman currently serves as Board Chair and Treasurer of PANDAS Network. During our interview, we gleaned additional information to support their awareness campaign.
Pohlman directed us to the PANDAS Network’s Scientific Advisory Board, which includes, but is not limited to, the following physicians who are spearheading the study of PANDAS.
Dr. Susan Swedo, who “discovered” and named PANDAS in 1998 is with the National Institute of Mental Health.
Dr. Madeleine Cunningham, University of Oklahoma, is a streptococcologist who has discovered the mechanisms specifically attacking the basal ganglia in PANDAS and other strep related diseases. In addition, Dr. Cunningham has launched Moleculera Labs providing diagnostic laboratory blood testing to achieve an accurate PANDAS/PANS diagnosis.
Dr. Dritan Agaillu with University of California -Irvine, is a neuroscientist who is slated to release crucial documentation in the Spring of 2014 discussing the attacks by strep to the blood brain barrier
Explore the growing Physician’s Network
Lingering Reluctance to Diagnose
“Many doctors assume, if they have heard of PANDAS at all, that it is only the sudden onset of “typical” pediatric Obsessive Compulsive Disorder or Tics. We believe Our Collective Voice of experiences will help them understand this illness reaches beyond that assumption.
PANDAS is currently a clinical diagnosis and open to interpretation and subjective observation. There are currently no conclusive diagnostic blood or neurological tests to be relied on.
Many doctors have not seen it. Nor have they seen Rheumatic Fever, which is a close-cousin to the PANDAS autoimmune syndrome, occurring and they don’t appreciate the variability of streptococci and its potential virulence.”
Who Can Diagnose?
An increasing number of physicians are aware of this illness. Start with your pediatrician. If they are unfamiliar with PANDAS, direct them to the NIMH website. Ask your pediatrician for a referral to a pediatric rheumatologist, neurologist and/or immunologist. PANDAS Network hosts a list of leading providers. Check this list to see if there is a physician in your area.
Antibiotics are the first line of defense and within a few days of antibiotics, parents should see a decrease or abatement of symptoms. However, if the antibiotics are stopped after a week or two, it is likely that the symptoms will re-emerge.
Pohlman suggests, “Advocate for your child and request a longer course of antibiotics. Because it is an inflammatory process, a Non-Steroidal Anti Inflammatory often help calm some of the intensity. A low dose of steroids for one week helps decrease symptoms even more dramatically. Lastly, IVIG and plasmapheresis have been found to be useful in very severe cases.”
Explore More >> Other Treatments
Pohlman cautions, “Again, it is likely you will need a doctor with prior experience with PANDAS to receive this treatment. If antibiotics do not adequately remit symptoms within one year’s time it is wise to consider a consultation with an experienced PANDAS professional.”
Educate the School Nurse and Teachers
Some schools are blessed with pro-active school nurses who have done the research to fully understand PANDAS and the symptoms of the students in their schools. School nurses are charged with educating the teaching staff about medical issues that impact their students.
Pohlman states, “EARLY Detection is Everything! School nurses and teachers just need to ‘know the symptoms of sudden onset’ to change the outcome. A strep infection or other infectious episode with a sudden change in personality–exhibiting as OCD or severe anxiety coupled with two of the following:
- neurological changes,
- urinary frequency,
- night time sleeping issues,
- age regression,
- learning losses,
- aggression and/or unusual behavior changes,
- separation anxiety.”
If a child has been diagnosed with PANDAS, the nurse can ask the child’s teacher to have parents of all the students in the classroom report a diagnosis of strep throat to the teacher or nurse. The nurse in turn can alert the family of the child with PANDAS further facilitating early detection and early treatment.
Explore More >> Resources for School Staff
A Visual of Struggling Families
Get a glimpse of extreme cases of PANDAS/PANS in the “My Kid is Not Crazy” trailer below:
PANDAS Network is a 501c3 non-profit corporation is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.
(1) “Children’s Mental Health Report.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 27 July 2016. Web. 07 Oct. 2016.