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Uhthoff's syndrome: heat exacerbates neurological symptoms

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I wanted to share our experience and observation that lengthy hot baths or showers and/or strenuous exercise seem to temporarily exacerbate our 10 yo daughter's PANS symptoms. The post-heat 'mini-flare' lasts about 15 - 20 minutes until her body reaches normal temperature again.


We've tested this (odd!) theoretical hypothesis several times and found it to be solid. When she is in remission, this doesn't seem to happen. It only happens when she is otherwise flaring, and exposed to extra heat.


Some research led me to Uhthoff's phenomenon, which seems relevant. I thought it was interesting, so I wanted to share.





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Interesting observation! The description of Uhltoff's phenomenon seems to be due to demyelinated nerves. How does that compare to PANDAS?


My kids temperatures appear to drop during a flare. They rarely feel cold, hate to be hot, and generally are miserable and PANDASy when they are. I always chalked that up to them being unable to handle any kind of adversity but perhaps there is more to this.

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