Surgery
Ideally,
deformities and fusion of the hands and feet can be prevented with daily
protective wrapping. However, repeated blistering and scarring can cause
deformities such as fusing of the fingers or toes or abnormal bends in the
joints (contractures). Doctors may recommend surgery to correct these
deformities especially if they interfere with normal motion.
Blistering and
scarring of the ‘esophagus’ may lead to esophageal narrowing, making eating
difficult. Surgery to widen (dilate) the esophagus may be needed. Using light
sedation, the surgeon positions a small balloon in the esophagus and inflates
it to dilate the area.
To improve
nutrition and help with weight gain, a tube (gastrostomy tube) may be implanted
to deliver food directly to the stomach. Feedings through the tube may be
delivered overnight using a pump. Eating through the mouth is continued if
possible so that the child will be able to eat with others for normal
socializing.
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