My young daughter with CdLS has recently begun pulling her hair. At times it is hard enough that she pulls clumps out. Is this associated with CdLS?
I would think that hair pulling was a sign of self-injurious behavior (SIB), which, as you know, may be exacerbated by discomfort (such as reflux). Hair twirling can be a mechanism of comforting, but not hair pulling like that. If she does not have worsening reflux, I would have them check the usual potential pain-causing things (e.g. ear infection, tooth infection, urinary tract, sinus infection, etc.). I would recommend contacting your daughter's Pediatric GI doctor as a first step to rule out possible medical reasons for the behavior.
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