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Ketogenic Diet
Question
Do you know of anyone with CdLS trying a ketogenic diet?
Answer of our experts
A ketogenic diet is used for seizures that are difficult to control. It would not have anything to do with the underlying diagnosis. Most neurologists, if they suggest it, try the diet and see how it works. If there is no change, they take the patient off of it. Probably, if it is being suggested, it is worth a try. A diagnosis of CdLS would not affect the outcome, either favorably or negatively
TK 7-13-10
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Recommendation(s)
Feeding and Dental Difficulties
R12
In every CdLS individual with prolonged and marked feeding difficulties, the multidisciplinary assessment (from healthcare workers across many disciplines) should consider (temporary) placement of a gastrostomy (surgical opening through the abdomen into the stomach) as a supplement to oral feeding.
R13
In individuals with CdLS who have recurrent respiratory infections, reflux and/or aspiration (breathing foreign objects into airways) should be ruled out.
R14
The palate should be closely examined at diagnosis. In case of symptoms of a (submucous) cleft palate, referral for specialist assessment is indicated.
R15
Dental assessment and cleaning should take place regularly; a more thorough dental examination or treatment under anaesthesia may be necessary.
Recommendation(s)
Autonomic nervous system
R47
Seizures in individuals with CdLS should be treated using the general management schemes.
R48
An MRI of the brain should be considered only if the individual with CdLS shows neurological signs other than microcephaly (smaller than normal head).
