Berkley’s PANS Story

My little girl Berkley has always been tough, she’s lived through two open heart surgeries and we thought all the bad times were behind us. But when she turned 9 she started getting horrible dizzy spells out of nowhere. We had her eyes and ears check and they all were fine. But then she started refusing school by saying it was too loud and she would get dizzy there, we made her go still and that’s when she started getting physical with us. Then week by week she started losing function, first she couldn’t open her eyes, then she couldn’t walk or eat then she was going to the bathroom in her underwear. Before long we had a newborn again, I was changing her pants and feeding her with a dropper. She lost 20lbs in one week. Meanwhile we were taking her to dozens of different doctors each week who all said she was just “acting up” and to “make” her stand again. After months of searching we found a doctor who diagnosed her with PANS. He told us another few weeks she may not be with us. Which was terrifying! With every dose of antibiotics she would gain one function back. Now we have our good days and our rough days, but are thankful for the progress she has made!