I am desperately searching for help for my 6 year old daughter, and I am hopeful that this community can help me.
As early as 6 months of age, I began to notice passing phases when my daughter was harder to reach (reduced smiling, eye contact, response to name). The phases would come sporadically (no more than once a month) and were brief (lasting a few days to a week). My husband, her pediatrician, and the developmental team that monitored my daughter due to her prematurity never noticed anything and were not concerned.
At age two and a half, the developmental team identified some soft markers for autism (reduced eye contact, some echolalia, some hand flapping). We had my daughter formally evaluated, but she did not meet the diagnostic criteria for autism due to a lack of repetitive/stereotyped behavior. However, because of her social deficits and quirky speech patterns, we began a program with therapists who felt confident she would be indistinguishable from her peers by kindergarten.
At age 4, my daughter came down with a coxsackie infection and also tested positive for mono/EBV. Within days of the illness, her existing autistic tendencies worsened, and she developed a host of new problems, practically overnight. She became anxious, depressed, emotionally volatile, and lethargic. She developed significant sensory sensitivities she had never had before. Her eye contact worsened and she lost many of the social gains she had made during therapy. Her passing phases of being hard to reach became constant, and she grew steadily dazey/spacey as if in her own world. In short, she was transformed from a child with manageable deficits that made her appear merely quirky to the casual observer, into a child whose challenges interfered with her daily life and made her easily recognizable as someone with a developmental disability.
In the two years since then, there have been stretches of time when she has made progress and we have been able to roll back some of the problems that came with the coxsackie infection (but never get rid of them completely or bring her back to the girl she was). But, these are always followed by a regression that brings setbacks and/or new problems. Sometimes, these regressions emerge over the the course of hours or even minutes, and my husband and I watch her fade away before our eyes. With several of these regressions, she has developed obsessive interests and a verbal tic in which she repeatedly whispers the last word or words she said after making a statement.
My question for you all is: could this be PANS? There is no doubt in my mind that the coxsackie infection irrevocably changed my daughter. However, she did not immediately develop the OCD behaviors that are the hallmark of PANS, and even now her obsessive interests and verbal tics are relatively minor. She also had some autistic tendencies even before the infection, and I have not read many cases of children with a preexisting developmental delay being diagnosed with PANS. Yet, so many aspects of her history (overnight change, ongoing episodic exacerbations, anxiety including separation anxiety, emotional volatility, depression, lethargy, poor focus/attention, urinary incontinence) point me to PANS.
It may also be noteworthy that at age two and a half (but after the first soft markers for autism were identified), my daughter developed a bulls eye rash and received two courses of antibiotics for probable Lyme Disease.
I'm in desparate need of a direction as I seek to help my daughter. Any and all opinions would be very much appreciated! Thank you!