For forældre, plejere, sundhedsplejersker og lærere opstår der ofte bekymringer og spørgsmål vedrørende pleje og velvære for personer med Cornelia de Lange syndrom.
From infancy to adulthood, feeding difficulties are very common in individuals with CdLS. Preferably, individuals with CdLS should be fed orally (by mouth). However, feeding difficulties may sometimes result in feeding times becoming unsafe, stressful and taking many hours out of the day. In these circumstances, doctors may temporarily supplement an individual’s feeding with a gastrostomy tube.
Anbefaling(er)
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.
Bemærk venligst, at Spørg eksperterne-tjenesten består af frivillige fagfolk inden for forskellige områder. Svarene betragtes ikke som en medicinsk, adfærdsmæssig eller pædagogisk konsultation. Spørg eksperten er ikke en erstatning for den pleje og opmærksomhed, som dit barns personlige læge, psykolog, uddannelseskonsulent eller socialrådgiver kan yde.
