Since 1989, the first 50 cases of PANDAS have multiplied across the United States. Like Autism, PANDAS has received the "special treatment" --irrelevant, genetic studies, doctor skepticism and not enough pertinent research. At a recent Microbiome Conference, I listened as both Autism and PANDAS/PANS were described as diagnoses that appear to be manifested behaviors that may originate in the bacterial and viral stew we each harbor in our guts. Those with an Autism diagnosis have an altered microbiome -- but why? And how does that relate to PANDAS/PANS?
What is happening to so many children? Will PANDAS/PANS cases start to be counted and will the familiar mantras of denial --- "BETTER DIAGNOSIS", "HAS ALWAYS BEEN AROUND BUT CALLED SOMETHING ELSE" squash the help so many families need -- PREVENTION and TREATMENT?
As the years have passed, PANDAS has also become PANS since it has been observed by parents, researchers and learned doctors that STREP is not the only microbial infection that can trigger the dreadful symptoms. Parents of so many affected children and teens have risen up to do what those in the Autism community have done for years now - reach out to their local politicians, the media, plus friends and family, to draw attention to this increasing disorder. On the map above, from the hugely favorite PandasNetwork.org, you can see the many states in which each governor declared October 9th as National PANDAS/PANS Awareness Day. Here are some of us, Illinois mothers, celebrating when Illinois Governor Quinn signed the decree last year. Wendy Nawara and Michele Kleczkowsky next to me and holding the declaration, have both been wonderful advocates for our kids and integral in spreading the word about October 9th PANDAS/PANS Day. Wendy runs a great FB group for IL, like other parents around the country do in their states, while also reaching out to local politicians and media. October 9th is the day that all of these states will collectively shout out that too many children are ill with PANDAS/PANS and some are being misdiagnosed and ending up in psychiatric hospitals, not getting the proper immune treatments that they need. Some of those children may also have an Autism diagnosis and the overlap of symptoms may indicate a very sick immune system and a very dysfunctional microbiome.
The momentum of pushing for awareness is the correct start. Next may be questions for researchers, government officials and government scientific organizations, like NIMH:
• Why is PANDAS/PANS increasing around the country?
• What is causing children to have immune and autoimmune reactions to what used to be, common illnesses?
• Has there been an explanation for why cases began to first appear around 1998?
• Why are we seeing only children, like in Autism, being affected?
• Tics are a significant and overlapping symptom in PANDAS/PANS, Autism and Tourette’s Syndrome. Is there a reason for that?
• More and more research is implicating the MICROBIOME as being altered in Autism and autoimmune disorders like
PANDAS/PANS. When will we see meaningful RESEARCH AND TREATMENTS for thousands of ill children?
Teresa Conrick is Contributing Editor to Age of Autism.