As I sit pondering where to begin, I realize just how difficult it is to actually write about my son’s struggle with the horrible disorder called Pediatric Autoimmune Neuropsychiatric Syndrome (PANS). My son’s illness started in early preschool, making it very difficult to detect “sudden onset.” By the time he was in Kindergarten, he experienced aggression, rages, emotional lability, insomnia, sensitivity to sound, bed wetting, loss of fine motor ability (i.e. handwriting), loss of math/spatial ability, OCD, Tourette’s-like motor/vocal ticking, and severe ADHD; he could not concentrate at all in school. I had no idea “why” my son changed and assumed it was Autism even though the Marcus Autism Center said he wasn’t Autistic. In fact, the Developmental Pediatrician’s exact words were “I can’t call it.”
Things went from bad to worse by the time he entered First Grade. I tried so many alternative treatments and programs to help with his severe ADHD but nothing helped. Finally, we took him to an Integrative Pediatrician and had blood work completed and couldn’t believe it; he had several high tithers for several different strains of Coxsackie virus. I connected the dots and recalled that all of his behavioral changes actually occurred after several illnesses, all which were in the span of a couple of months. He had Strep that turned into Scarlett Fever, two weeks later strep again, vaccinations at his 3 y/o well check, and 2 separate episodes of Hand, Foot, and Mouth disease. In fact, I had to postpone his 4th birthday party in September because he had Hand, Foot, and Mouth Disease. The doctor who ran the test never even mentioned he could possibly have Pediatric Autoimmune Neuropsychiatric Syndrome (PANS), she only suggested that I get green
olive leaf to treat the virus. Which I did to no avail.
After researching all of his symptoms it finally occurred to me that he in fact has PANS. He is 7 years old now and in 2nd grade and struggles. He tics are still bad, he has severe anxiety, and the OCD is the worst it’s ever been. He does not comprehend basic math and has even forgotten words he knew in pre-K. This year he went on meds for ADHD which honestly don’t help. We are still trying to beat this dreadful disorder. Recent bloodwork still shows Coxsackie virus, basically his immune system is a train wreck! I’m still learning how to deal with this disorder. I have really just figured out that when he is aggressive, loud and out of control, his body is being attacked by a virus and it’s causing inflammation in his brain. It’s a horrible thing to be able to give your child Motrin to bring them back to a calm state.
In my honest opinion I believe the vaccinations that are being administered to our children are “making them sick”. I also believe that had we had a pediatrician who was knowledgeable about PANS/PANDAS we could have treated him sooner. My son suffered for two years because of the medical community’s ignorance to this dreadful disorder. It not only affects the child going through it, it affects the whole family. As a parent you feel helpless and hopeless watching your child suffer and being told “I can’t call it.” Awareness and education are the key and I sincerely hope we can make significant strides in Georgia to make this happen.