by Whitney Rinaldi | Oct 18, 2018
Is premature fusion of the fontanel common in CdLS? What is the recommended treatment? The entity is called craniosynostosis, or premature fusion of the sutures. Normally, the skull is made up of several separate bones that eventually fuse together at the suture...
by Gabbie Nadeau | Oct 18, 2018
My 4 month old daughter is fed through a g-tube that is controlled by a feeding pump. How do I calculate her formula increase as she gains weight? She is currently between 8.5 and 9 pounds and is 20 inches long. For a child under age 2, there are a lot of...
by Whitney Rinaldi | Oct 19, 2018
Our daughter’s periods can be regular, but she can go over 70 days between. This often causes her great stress or pain (we’re not sure) and she has uncontrollable behaviors such as bad self-injury and contortion-like movements. We have Lorazepam for her...
by Whitney Rinaldi | Oct 18, 2018
My son with CdLS, who is 9 months old, weighs 10 pounds – 7 ounces, has a cleft of the soft palate. When is the best time to have surgery? Clefting of the soft palate only (no lip nor hard palate involvement) does not have very much affect upon the dentition....
by Whitney Rinaldi | Oct 18, 2018
Is diaphragmatic hernia common in CdLS? In an issue of the American Journal of Medical Genetics, Cunniff et al report that diaphragmatic hernia may be a relatively common feature in newborns with the Cornelia de Lange syndrome. Twelve newborns are presented from a...
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