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Pulling out feeding-tube buttons

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Question

Recently, our daughter has begun to pull out her mic-key button. Eventually it finds its way into her mouth and she bites the bulb. We went through two mic-keys last week. Covering and taping the mic-key has not been helpful. She gets that off and/or the paper tape irritates her skin and causes her to be more irritable and picking at the mic-key site.

Answer of our experts

There are various ways around it. If you aren't using it, I would wrap her trunk in Curlex and put clothes over it. If you are using it you can do the same thing and have the tubing come out where she can't reach it. You can put button holes in the back of her shirt and have it come out there. Put tape on the tube and pin the tape to her clothes so if she pulls, it pulls on the clothes and not on the tube

CP/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.

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