A Long Overdue Diagnosis

“What happened to Ruth Anne?”


“What happened to Ruth Anne?” her kindergarten teacher asked 26 years ago. She had experienced numerous infections and had tubes put in her ears. She struggled with attention and the once sweet, kind child became anxious and irritable. By 3rd grade, she couldn’t write, pay attention, read, and was diagnosed with ADD. Chronic infections ensued and restricting food intake began. She was diagnosed with an eating disorder. We made it through those years with the support of several wonderful teachers.

Fast forward to 5 years ago, at about age 27, when family and environmental stressors began to take a toll and 3 years ago, at about age 29, our journey to hell and back began. OCD, suicidal ideation, fears they were coming to get her, poor judgment, wild spending sprees, violence toward me, auditory and at times visual hallucinations resulted in multiple psych hospitalizations and many diagnoses. I kept pleading that there was something more going on with her than the psychiatric diagnoses they were using. Storm after storm while she had UTI’s that at times went untreated because of the psych presentation.

With our friend’s daughter’s diagnosis, another friend scoring the movie My Child’s Not Crazy and another friend suggesting Ruth Anne might be suffering from PANS, I put the pieces of the puzzle together. Her primary care provider agreed that all of her symptoms might very well be a result of PANS. I advocated for her to get on a psych med regimen that had been most effective with the least amount of side effects, and her primary did a urine culture after discharge from the psych hospital. {As an aside, there was a wonderful OT at the hospital who recognized Ruth Anne was struggling with OCD and impairment consistent with “some type of organic brain syndrome.” She gave wonderful suggestions for books with exercises that helped football players with post-concussive syndrome.} While the culture was negative, she had a very high WBC count in her urine. He treated her with 500 mg ciprofloxacin twice/day and I initiated treatment with ibuprofen 3X/day 200mg tab along with psych meds. We slowly saw improvement. She is now able to read again, do brain puzzles and Sudoku, has signed up for volunteering, is writing in her journal and is so relieved to have a diagnosis and treatment options available to her finally.

She has a long road ahead, but for the first time in 5 years, we have hope. We understand and can be supportive and patient with her as she finds her healing path. She is able to help around the house and feels she has a future. In addition to medication, she sees a chiropractor once a week, which is bringing her relief from anxiety and depression. We are seeking out resources for a new psychiatrist and therapist who were, unfortunately, exacerbating her fears and struggles due to their lack of understanding of PANS and what was going on with Ruth Anne. We are connected with a wonderful urogynecologist who explained why Ruth Anne is at risk for UTI’s and what we can do to minimize this risk, knowing the importance of getting treatment quickly if she has another infection. As with all of us, we live one day at a time pouring love and support to help our daughter, who is now age 32, to heal and reclaim her life. Running has been a passion of hers and she is finding it to be a great way to relieve stress along with meditation.