I am a pediatrician who cares for a two-year-old girl with CDLS. My question is regarding disrupted sleep patterns, excess sleep, often followed by no sleep for 18+ hours. This is difficult for her family with two other older siblings, as you can imagine. Is there experience using any medications to aid her sleep pattern such as Melatonin or even Amitryptiline, etc?
I have used Melatonin in those children with CdLS unable to get to sleep. A major problem, however, is the marked difference in availability of the drug from different manufacturers. The drug is considered a ‘food’ and not monitored by the FDA. We have our pharmacy stock brands that have been tested more thoroughly.
Also, for children with ‘sleep terrors’ low dose Valium may help. I don’t have much experience with Amitryptilline.
Legal Disclaimer: Please take note that the CdLS Foundation’s Ask the Expert service is comprised of volunteer professionals in various areas of focus. Response times may vary and a response is not guaranteed. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.