Per i genitori, gli assistenti, i fornitori di assistenza sanitaria e gli insegnanti, sorgono spesso preoccupazioni e domande riguardanti la cura e il benessere degli individui con sindrome di Cornelia de Lange.
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.
Raccomandazione
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.
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le nostre domande e le risposte dei nostri esperti
Si prega di prendere nota che il servizio Chiedi all'esperto è composto da professionisti volontari in varie aree di interesse. Le risposte non sono considerate una consultazione medica, comportamentale o educativa. Chiedi all'Esperto non è un sostituto per la cura e l'attenzione che il medico personale di tuo figlio, lo psicologo, il consulente educativo o l'assistente sociale possono fornire.