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Hair pulling


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?

Answer of our experts

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

TK 7-13-10

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Pain and Behaviour

As pain can easily remain unrecognised in a child with CdLS, all care providers should be aware of the different manifestations and the possible sources of pain. Specific tools to assess pain are recommended.


Self-injurious and aggressive behaviour

To identify the cause of self-injurious behaviour in individuals with CdLS, medical assessment, specifically looking for sources of pain, should be followed by behavioural assessment of self-restraint then functional analysis.
Treatment of self-injurious behaviour should include both medical and behavioural strategies.

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