I have a child with CdLS who just turned 11 but according to psychological testing, functions at about a 4-year level. She has an exceptional vocabulary. After the age of ten she started to grow pubic hair. She has not said anything about it yet. I am extremely worried about her getting a menstrual cycle. I'd like to know what could or could not happen physically and how I explain this to her.
It seems that children with CdLS undergo puberty changes at the same age as or a little bit later than unaffected children. Puberty in girls starts with pubic hair, but it often can be two or three years before menstrual periods start. It seems that with CdLS the periods are irregular, although some girls do bleed regularly. Parents have reported to me that their daughters do have a hard time with the idea of the bleeding, particularly changing the bloody pads. Is your daughter toilet trained? That also seems to make a difference. I think I would recommend telling her in a non-threatening way a little bit about why women bleed and about where babies come from. Also, if possible, let her see other family members' pads. I am sure that you could get much more practical information from other families.
Some parents have elected to use a form of birth control called Depo Provera. This is a hormone (progesterone) shot given every three months. Often with the use of Depo Provera, after three or so cycles, the menstrual period stops altogether. This is not thought to be dangerous and has the advantage of no more bleeding. It also provides a type of birth control for her protection, if she is ever in a situation without family members.
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