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Showing results for tags 'false diagnosis'.
I'm new to this forum, though I've been reading avidly, trying to absorb people's experiences -- and get validation. Last week my DS16 got a new symptom that creeps him out and puzzles me. He is newly dx with PANS, and more complex symptoms than DS21, who used to get PANDAS exacerbations w/ sinusitis, (responsive to Abx (+ steroids)). Recently DS16 has got severe anxiety, panic of dark (at 16!), intense anger / emotionality, sensory intolerance (glass, ceramic, rubbery textures ..), deteriorated handwriting, and some choreiform movements. Gifted (well 2E) but w/ inexplicable terror about school since August. Last week, a week after the PANS dx, and while on Augmentin, he got a new infection, and a severe exacerbation with the sensory stuff above, plus the following neurological puzzle. We call it the reverse-phantom or 'disappearing hand': Any time he is touched unexpectedly on his arm, shoulder, back, foot..., by someone else, when he doesn't see the actor's hand NOR his own hands, his brain thinks that it must have been by his own hand(s), and so his hands must have gotten there. But since his fingers/palm didn't feel the touch they supposedy made -- suddenly they disappear from his body-schema . He KNOWS the hand is gone (so there's no point to look for it). It doesn't happen if a) he can see my hand touching his body, or he can see his hands as he gets touched, © he has his hands touching some fidget or cat... so he knows where both hands are. As you can imagine, it's pretty frightening for him. Has anyone else had this? DS16 says that even when brings up his hand, the hand "phases in and out" for a few minutes, as if his body does and then doesn't have a hand. Today a few of his fingetrtips & nails disappeared for a while, when he felt I'd stroked his back with a fingernail. Last Fri he was doing a neuropsych eval (for IEP). w/ an excellent, experienced PsychD. She siad that it's definitely neurological, maybe the temporoparietal junction (TPJ), and/or the extrastriate body area (EBA), which together process our body's sensory input and create/maintain our model of our embodied self and where all the parts are in space. Are the TPJ or EBA anywhere close to the basal ganglia, immunologically related, or connected to them? I don't know who to go to -- it sounds so weird, I'm concerned he won't be believed. A psychiatrist already wondered if he was psychotic (the PsychD laughed at that, but...I'm gun-shy). We're in the SF Bay Area.