In late November of 2023, we noticed that our daughter, Sammi, had a limp. She had fallen and said her knee hurt. The next week, she began acting very tired and sick. We took her to the hospital, and they ran some tests. Thankfully, she was fine. That was the first day I questioned the doctor’s assessment. In the days that followed, she became riddled with anxiety. She cried in fear of leaving the house, going to sports practice, and going to school. She began walking with an abnormal gate and said it was fear of getting hurt, not pain, that was causing it. She became fearful of eating. We made multiple trips to the pediatrician.
Sammi was told to go to a counselor for anxiety. Things got worse. She went to the counselor, who suggested occupational therapy. Things got worse. She lost the ability to run, jump, and navigate stairs. She had to lift her legs with her hands to get in and out of the car and bed. She refused to eat – crying for 35 minutes – being forced to eat a small piece of cheese. She was terrified of stores, restaurants, strangers, and even people she has known. We had to force her off of her safe space on the couch to do laps around our house to move her body. She was stiff and so thin. She was a shell of herself physically and mentally. She had nighttime accidents after eight years of no issues. She cried each morning, disappointed she woke up feeling the same.
After months of occupational therapy and fighting for answers, we needed more. I always questioned if this could be PANDAS. I was always brushed off, being told by her pediatrician that I needed help for my anxiety.
The pediatrician also said there was nothing physically wrong with her, and I was making it worse.
We got a referral for Neurology and Rheumatology. Thankfully, we found an open-minded Rheumatologist who ordered blood work. The first sign that this was not a mental health issue was that her inflammatory numbers were through the roof. The poor child’s brain and body had been fighting for months.
She had lost 20lbs, lost 7 months to this relentless Hell she was stuck in. He put her on Naproxen. Within a week, she was eating. Within two weeks, she was walking normally. She ordered at restaurants, went to friends’ houses, and jumped on trampolines!
When we went to the follow-up with Rheum, the doctor said he would not have believed it was the same child had he not seen her before. Sam was back. With knowledge of her inflammation and symptoms, I, as Sam’s mom, felt justified in fighting for what I had known all along. We found an incredible NP who did more bloodwork and officially diagnosed her with PANDAS. Even though she had never in her life tested positive for Strep, the bacteria’s antibodies were in her bloodstream; this felt like the final piece of the puzzle.
She has also been diagnosed with Juvenile Arthritis as the Rheum thinks whatever “it” was settled in her knee. She has continued on Naproxen twice a day for 6 months now. She has had some food issues, knee swelling, mouth sores, and a few trials, but she is thriving! We have more blood work ordered and a recheck with Rheum this month.
Last year, Sam had to be picked up at the office because she could barely walk. But when she started 4th grade, she walked to and from school. She had missed out on sports, gym class, and playing on recess last year. This year, Sam is back playing soccer and enjoying time at the gym. Last year, she couldn’t walk the stairs at school, couldn’t get in and out of the car, or sit on the ground. In June, she celebrated her healing by walking around Disney World. There was a time a few months back when I wasn’t sure we would ever be able to do Disney again without a wheelchair.
She is a warrior! I hate even to think where she would be if I hadn’t known about PANDAS. We are so thankful for the progress she has made and pray for continued treatment and healing for our girl.