Abby’s Story
The change we saw in our daughter hit us like a tidal wave one day in November of 2018. We had no idea what was happening, and we began searching high and low for reasons explaining this sudden change in our once bright and bubbly 11-year-old. Was it the start of middle school? Was it the shifting of friend groups? There was no explanation that seemed to fit the severity of the emotional and behavioral changes that we were witnessing.
Her health and ability to function continued to rapidly decline, requiring several hospitalizations. We felt hopeless. Almost 8 months later, at an annual physical, Abby’s pediatrician recalled that she had pneumonia two weeks prior to our request for a behavioral consult. I had heard the term PANDAS and began frantically researching. Thankfully her pediatrician was willing to draw some initial labs, where we found elevated antibodies for strep and mycoplasma pneumonia. Abby was immediately put on antibiotics. Things got slightly better, but she was nowhere near back to her old self. We knew we needed to run some more tests, but we had maxed out the knowledge of our pediatrician.
So we went to the Lyme / PANS Treatment Center in Cohasset. There, we were able to run some more diagnostic testing. These tests are not covered by insurance and are extremely expensive. Without the financial assistance of the grant we received from the JBC Foundation, it would not have been possible for us to run these additional lab tests. From these labs, we found elevated levels of mold toxins, active Lyme disease, Bartonella (another tick-borne disease known for causing neurological damage), and gut biome issues, all indicative of a PANS (Pediatric Acute onset Neuropsychiatric Syndrome) diagnosis.
Our journey with PANS has been nothing short of horrific and devastating. But because of the testing we were able to do with the JBC Grant money, we became armed with important medical information about the overload of infection antibodies plaguing our daughter’s body and brain. We took the lab results to a world-renowned Lyme neurologist in New York City, and she and a PANS specialist worked together to put Abby on a combination of three different antibiotics and IVIG treatments. I can happily say that today, Abby’s health is dramatically improving, and she is back to school full time after missing more than half of her middle school years. We now have hope for a future for our daughter that we could not see two years ago. The JBC Grant helped us get here, and we couldn’t be more grateful.
