My 4 year old daughter was diagnosed with PANS by 2 psychologists. The local neurologists in Chicago, are aware of PANDAS but not of PANS and have been fairly dismissive as her strep screens were negative.
She was seen by several psychiatrists who told us this was medical but put her on risperdal for symptoms.
She had acute onset visual and auditory hallucinations in August 2013 with mental cloudiness, loss of bladder and bowel control, loss of speech with inability to start or continue sentences, repetition of heard words or phrases, deteriorating fine motor skills and severe separation anxiety. From the beginning she asked for medicine and said she was sick and would be scared when she could not talk.
We did manage to get her treated with IVIG and steroids several weeks later- after testing only showed mycoplasma IGG in her spinal fluid, and low complement levels and some slowing on EEGs.
She is now off risperdal and steroids.
Since then her speech has returned, but she still has some hallucinations which may actually be more fear related at this time.
We cannot find any local specialists and are concerned regarding possible relapses and general care.
We do not know if we should expect relapses with illness, best course of treatment, or by what age chances of recurrence declines.
We would appreciate any input.