Today, October 9, 2013 marks the first PANDAS/PANS Awareness Day. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is often referred to as rheumatic fever of the brain.
As Executive Director of PALNYC, I want to make a personal plea to parents to put PANDAS on their radar now. Exactly two months ago– like most parents– I wasn’t familiar with the disorder, but now, after three specialists have concurred that my daughter’s symptoms and blood work (13 vials no less) are consistent with a PANDAS diagnosis, I’m reading everything I can find and putting a team together of pediatric neurologists, psychologists, pediatricians, a homeopath, ENT, teachers, school staff and family to treat my 7-year-old daughter.
What does it look like? It can differ, but for my daughter, she displayed sudden onset motor and vocal tics, a sudden and very out of character separation anxiety, loss of focus, chorea-like movements, irritability and a change of temperament that didn’t fit our chilled out little girl.
Getting Diagnosed
Despite our regular pediatricians not being familar with, nor really subscribing to the experts diagnosis, we are fortunate to have found some great local specialists and resources, including Pandas Network.org, The OC Foundation and Latitudes.org. (I’m happy to share specialist recommendations with others as well.)
These resources have led us down the path toward treatment and hope. And it is my hope that others will benefit from our experiences, and those of families before us by learning the symptoms and signs early:
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 symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more. These infections are often asymptomatic and go undetected. The autoimmune reaction can be stopped and symptoms are able to completely remit, but DIAGNOSIS and TREATMENT are necessary for this to happen. ~ PANDAS Network.org
Multiple states have officially proclaimed this day of awareness and acknowledged the need for educating the public and medical community about this autoimmune disorder. PANDAS Network.org is urging the public to help children be correctly diagnosed, have the opportunity to be treated, and put an end to unnecessary suffering. These devastating syndromes can no longer be ignored.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acuteonset Neuropsychiatric Syndromes) are devastating syndromes that are likely as prevalent as Pediatric Cancer and Pediatric Diabetes, yet awareness and education is scarce. 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.” (www.cdc.gov/features/childrensmentalhealth) Finding out the root cause for these symptoms is imperative. If the onset is a result of PANDAS/PANS, a child can possibly be saved from a lifetime of suffering.
According to FoodsMatters.com, Children with PANDAS must initially be diagnosed with obsessive compulsive disorder (OCD) or a tic disorder. The children may have some of the following symptoms that accompany the OCD or tic disorder [Swedo1998][Moretti2008]:
• Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety);
• Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation);
• Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance);
• Emotional lability (e.g., irritability, sudden unexplainable rages, fight or flight behaviors);
• Age inappropriate behaviors particularly regressive bedtime fears/rituals;
• Significant separation anxiety;
• Oppositional defiant disorder;
• Tactile/sensory defensiveness;
• Marked deterioration in handwriting and math skills;
• Anorexia (particularly a fear of chocking, being poisoned, contamination fears).
The controversy in PANDAS (and, oh yes, there is a lot) is not about whether the children have the symptoms listed above. The controversy is whether the symptoms are caused by a common bacteria known as Group A Beta-Hemolytic Streptococcus (the bacteria in strep throat).
…The good news in PANDAS is that the condition does not seem to result in damage to the heart. The bad news is that without significant signs of chorea or heart involvement, most doctors will say, “Oh, your child has OCD.” Or, “Oh, your child has tics.” They don’t pursue the possibility of a bacterial cause. They don’t think about strep so they don’t think about antibiotics, the first treatment that should be considered for PANDAS.
To attend the upcoming NE PANS/PANDAS 2-DAY CONFERENCE in Rhode Island on November 9 and 10, see NE_Final_PANDAS_POSTER
Featuring Speakers: Dritan Agalliu, PhD * Kenneth Bock, M.D. Peggy Chapman, MSN * Madeleine Cunningham, PhD * Jeanne Hubbuch, M.D. * Beth Latimer, M.D. * Beth Maloney J.D. * Jamie Micco, PhD * Diana Pohlman * Susan Swedo, M.D. * Rosario Trifiletti, M.D.* Jolan Walter, M.D. * Kyle Williams, M.D.
Learn more about PANDAS on these links:
PALNYC 