My Country Tis of PANDAS and PANS
By Teresa Conrick
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.
Getting people to be aware is step one in changing the future of so many ill kids. These awareness T-shirts for PANDAS/PANS describe the many difficult symptoms our kids can develop.
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.
Hi! Love the t-shirt! Would love to use it for 2015 PANDAS/PANS Awareness Day r shirts in Charlotte! Is the image available? Thanks!
Katherine
Posted by: Katherine | August 05, 2015 at 10:31 AM
Jenny;
I am not saying that GMO food is not making people sick -- but when you have Fasano working on a cholera vaccine for 20 years and he fails in the end because it caused celiacs -- then you are left at guessing - does it really matter what they change the wheat to -- if not for the vaccines?
Posted by: Benedetta | October 11, 2014 at 06:45 PM
Hi. Yes, t-shirts available here:
http://www.booster.com/ts4empoweredhandsforpans
Posted by: Teresa Conrick | October 11, 2014 at 03:01 PM
Are shirts available still?
Posted by: Kristine Johnson | October 11, 2014 at 09:38 AM
Yes, thanks for clarifying the year, though I still wonder how long GMO soy, corn, cotton were in the experimental fields before actually hitting the markets, and according to Dr.William Davis wheat was significantly changed twice in the 20th century by rather extreme breeding techniques, once in the early 1900's and again in the 80's (exposure to gamma rays, if I remember correctly), the same general time periods of the first autism cases and the formation of the protect-thimerosol-and-those-who-inject-it-into-babies politics.
Posted by: Jenny | October 11, 2014 at 08:41 AM
Thanks, Teresa. 1989 is the official year for the global increase in autism also, isn't it? Hard to assume it's just another "coincidence."
Posted by: Jeannette Bishop | October 10, 2014 at 02:04 PM
I know PANDAS. PANDAS, PANDAS very well. However, most doctors, sadly, do not.That is, mainstream doctors. No help from them. Yes, there is so much more to learn about it. Thanks, Teresa
Posted by: Maurine Meleck | October 10, 2014 at 09:07 AM
Hi,
Yes, that is a typo. My bad and thanks for catching that Jeannette. 1989 is the year I am referring to as a point of origin.
Posted by: Teresa Conrick | October 10, 2014 at 07:01 AM
@PANDAS Mom, thanks very much for the information.
Posted by: Jeannette Bishop | October 10, 2014 at 04:29 AM
"Should these both refer to the same year?"
Yes, looks like its just a typo. Susan Swedo published the first-ever paper on PANDAS in 1998, entitled Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal Infections: clinical description of the first 50 cases. These were not necessarily the first cases, but the first cases studied. A few PANDAS/PANS parents have reported that they believe they or a sibling had PANDAS/PANS as children, so it has probably existed for a while, but like autism the numbers seem to be exploding.
Posted by: PANDAS Mom | October 09, 2014 at 11:45 PM
Query:
"Since 1989, the first 50 cases of PANDAS have multiplied across the United States."
"• Has there been an explanation for why cases began to first appear around 1998?"
Should these both refer to the same year?
Posted by: Jeannette Bishop | October 09, 2014 at 09:10 PM
1998 First diagnosis? Didn't glyphosate resistant soybean, cotton, and corn entered the market in 1996, 1997, and 1998? Assume that's GMO, right? I think we are all starting to get the picture of what GMOs and the increase in glyphosate has done to the microbiomes in the fields, which means in the farm workers, their families, the food the animals eat, and the food that we eat, which means our own stomachs, which means our own brains.
Heavy metals would only make that worse.
Speaking of heavy metals: Probiotics may protect against heavy metal poisoning -
http://www.sciencedaily.com/releases/2014/10/141007092356.htm
Posted by: Jenny | October 09, 2014 at 06:40 PM
Everyone needs to know more about this.
Posted by: John Stone | October 09, 2014 at 03:53 PM
Informative video on PANDAS/PANS testing .
http://youtu.be/yIQEMcHoXlM
Posted by: Candice | October 09, 2014 at 02:16 PM