As some of you know, our son Miles was diagnosed with PANS this Summer, which stands for Pediatric Acute Neuropsychiatric Syndrome. Miles has had the precise clinical presentation of someone with PANS since he was a baby. Even though we spoke to multiple doctors about his symptoms over the years, the doctors never put anything together, and kind of shrugged their shoulders and had no direction for us to get him help.
Fast forward to this Summer, I accidentally stumbled onto a webinar by a Functional Medicine pediatrician discussing PANS. I had no idea what it was, so I decded to watch it. Within 4 minutes into the webinar, I had to pause the video because it showed a list of symptoms that was exactly the symptom list Miles experiences. I was stunned.
I couldn't understant why my well-educated pediatrician had not mentioned PANS to me since we discuss this exact same list of symptoms every appointment. I called my pediatrician and went in with a list of the symptoms from the webinar, and my pediatrician informed me that she didn't really know much about PANS, so would run whatever tests I wanted (putting me in the doctor role), or refer me to a pediatrician in town who does understand PANS.
Most doctors think of PANS as a rare disorder, but it's not. It is estimated that it affects 1 in 200 children, and this will likely climb as we have seen a similar trajectory in the autism community, Because pediatricians and other doctors consider it rare, they are not educated on how to recognize it.
The money raised from this fundraiser is critically important to help educate physicians in our community about how to recognize and treat PANS (it's actually pretty easy). Currently, in the Metro Atlanta area, there are only three physicians who know how to recognize and treat PANS. As a result, the majority of kids do not get the help they need, and some are prescribed serious psychiatric medications and put in psychiatric hospitals instead of getting them proper treatment.
PANS starts with a trigger, whether it is strep, mold, metals, lyme, or some other infection or toxin. This causes the PANS child to have an autoimmune response that ends up causing brain inflammation. In a child with PANS, the brain inflammation causes frequent urination, OCD-like thinking, learning difficulties, separation anxiety and other forms of anxiety, restrictive or picky eating, sleep issues, sensory issues, tics, and temper tantrums that can last for hours.
Miles suffers from all of these symptoms, and we have spent thousand and thousands of dollars trying to help him. Today, we are one of the fortunate ones to know at least what is going on with our son, and to be able to get him in with a doctor who understands and treats PANS.
We love our PANS doctor, but the reality is she is only 1 of 3 doctors treating PANS in the Metro Atlanta area, so she sees a lot of kids with PANS. We need more doctors and resources for kids with PANS. The money raised through this fundraiser will help achieve that goal.
For Miles, and the many other children like him, please consider making a donation to help educate physicians to learn how to recognize and treat this very treatable condition. Otherwise, undiagnosed children will likely end up dropping out of school, and end up in psychiatric hospitals or prison.
Brain inflamation is treatable, but not if conventional doctors continue to not recognize what is happening with these kids and simply prescribe them psychiatric medications instead.
Please consider a donation today. It is so important to so many children and families suffering in isolation because they don't know what is happening with their child.