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My son’s foreskin seems to have grown back some and he dislikes having his genitals touched. He refuses to clean beneath the foreskin himself, which sometimes results in infections. Is having one’s foreskin grow back a phenomenon that occurs in males with CdLS? His doctors are suggesting another circumcision. Do you know of any other males with CdLS who have had to have this procedure repeated?

Answer of our experts

This sounds like a phimosis, which is when the foreskin cannot be retracted, and should be addressed since it can lead to problems. It would not be related to CdLS. I haven’t heard of this with CdLS, but it would be worthwhile to put the question to the CdLS Online Support Group to see if you can find other parents. I would recommend a pediatric urologist or pediatric surgeon to evaluate him for this, and they might be able to refer you to another family (maybe not with CdLS but having a recent similar experience). Occasionally with any circumcision there can be excessive or redundant skin and this may need to be repaired subsequently. Again, this would be unrelated to CdLS.

TK 7-13-10

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