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thoughts re: scary sensory integration puzzle in newly Dx son?

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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 :o. 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 B) 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.

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Hi- so sorry you are going through this. My HS age daughter suffers w/ pandas too. She had a bad flare up last year, which left her unable to attend school for 3/4 of last year due to OCD (looked like inexplicable terror of school).


As for the hand issue- although I have no experience with that,I am sure it is due to pandas, and the sooner you get the flare under control, I am sure this will be gone. Do you have an experienced pandas Doctor?

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Both my ds's had strange symptoms which distorted their ability to understand where their own body was in space. Although not the same as your child's experiance exactly, it was similar enough for me to wonder if your child has Lyme diseaese. Both my boys do and these very strange symptoms have begun to resolve with treatment.

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I would assume this sensory issue has something to do with inflammation in the brain? I've not heard of nor experienced this particular variety of sensory issue, but it seems to me to be reasonably consistent with the sorts of issues that have been reported as occurring during a period of inflammation or encephalopathy. Have you, by any chance, read "Brain on Fire" by Susannah Calhanan? She experienced some very unique yet oddly familiar sorts of symptoms during her PANs-like illness.

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It sounds like you might be describing a "cotard delusion"- which can vary from thoughts of missing body parts to thinking you yourself are a corpse. I would second the brain on fire recommendation and also recommend looking past pandas and at the many causes of AE. My daughter did not have cotard syndrome but had other psychotic thought processes that were alleviated by aggressive autoimmune treatment.

Here is a short article:



Edited by powpow
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Does his hand actually visually disappear or is it his proprioception of it. It doesn't exactly fit, especially if it is all visual but if it could proprioceptive led and sort of bringing/persuading his visuals it could be along the lines of Alice in.Wonderland syndrome. This isn't only related to PANDAS but it has definitely been reported in PANDAS kids (mine included) and can be a very varied issue from you/your environment/body parts seeming to shrink or grow. That's a really bad explanation of it. But you can google it..


I get it, I suspect when really tired or got a fever coming on. My digits will balloon in size and just not feel like they are where they should be, I will also feel as if my legs have shrunk and I am a couple of inches off the floor or walls will look as if they are moving miles away from me. I know they aren't but my head tells me they are, weird stuff like that, I can imagine that morphing even more with some PANDAS involvement.



Anyway just an idea... good luck

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Thank you all for your support and ideas. You've given me things to look up and think about. To answer the questions:


1. We're in the San Francisco Bay Area, but ineligible to be seen at the Stanford (Packard) PANS/PANDAS clinic because ds16 doesn't fit their current research study criteria, and they're way overloaded.


2. He describes the hand as "phasing in and out", where he stops feeling and seeing it, then a minute or two later it slowly fades back into existence, is visible, and then it fades out, so he can see the stuff behind it. Not exactly; he can't read a sign or newspaper behind it, but his brain fills in "out of focus" stuff, so he can 'see' his blanket or the wall. We guess that it is the same mechanism our brain uses when filling in the blind spot from our fovea, and we're not aware that we even have a blind spot.


When his hand is "phased out", it feels very odd when he moves his fingers intentionally -- because he says he doesn't know quite where they are. However when the hand "phases in", it is the right size, shape, and feels like his normal, completely alive hand, so in that sense it's different than the "Alice in Wondrland" or the "cotard delusion" . What is similar is that what he experiences is a repeatable distortion of his body map -- yet it is not a hallucination in the ordinary sense.



3. Update:


Today we saw a clinical psychologist who remebered a professor of hers describing some adult neurology patients whose experience was exactly like ds16s. She's emailing him to find out what the brain issue was.

Yesterday we were seen by a PANS psychiatrist, MT. She thinks the disappearing body parts are a manifestation of the brain inflammation, just like his sensory defensiveness (he can't bear to touch glass, metal, porcelain). Dr. MT increased his prednisone from 20 to 60mg/day for 5 days, and gave us a referral to a neurologist.




What would a neurologist visit tell us, assuming that it is from PANS -- would an MRI or EEG show anything? Or is it simply for reassurance (of course, that's no small matter). Or to rule out other things, to make a better case for IVIG if we wind up needing that??



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I would think a neurologist visit will rule other things out, and an MRI may identify areas of the brain that are suffering from inflammation, as well. There's another neurological diagnostic tool -- a PET scan -- that some doctors at Detroit Children's Hospital/Wayne State have used with respect to PANDAS and OCD in kids.



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Thanks! That article is useful, both in showing that the MRI would have a much better negative predictive value (if the basal ganglia are small, then PANS is unlikely), because the larger volumes appeared in both the cases and controls.


Still, if all three structures' volumes were above the mean (but not the thalamus), then that would strongly suggest that there is inflammation.


So especially since the MRI doesn't involve x-rays, it seems like a good thing to do.



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Just a note: 2 top PANDAS docs that work with Susan Swedo diagnosed our dd - she had all symptoms of PANS but one, and her history follows, too. That being said, she had a NORMAL MRI. So don't assume an MRI will show anything.


Personally, if we had access, I'd go with a PET or SPECT scan. I can't find any SPECT scans around us (Midwest), but I know the Amen Clinics have them. I think they show a lot, but I'm sure someone there could tell you about it.

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  • 5 months later...

We had the MRI. No obvious signs of inflammation. One point bright spot of unknown significance.


I'd love to do the SPECT too, because I know there are some really weird things in his brain. And we are near an Amen clinic. However a brain CT sure is a high X-ray dose, and I think the SPECT even higher.


And, as importantly, I don't know that any MD, or insurance company, would find a SPECT clinically useful. Or could it show inflammation?

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