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Epidermolysis Bullosa
Home Care Programme

Standard Care Plan Epidermolysis Bullosa

Patient has difficulties in obtaining or maintaining a good nutritional status

Symptoms:

* The patient / carer makes comments that point to problems with maintaining a good nutritional status

* Patient indicates that he/she feels weak and apathetic

* Emaciation

* Insufficient weight gain

Objective:

* The intake of nutrients and fluids is secured and the patient maintains and/or obtains a good nutritional status

Causal or relating factors Actions / Interventions
  • microstomia
  • pain in the mouth when
  • chewing insufficiently
  • insufficient functioning of
  • salivary glands
  • recommend the use of dessert or
  • children's cutlery
  • recommend not eating any meals that are too spicy, hot or dry
  • recommend taking small bites
  • recommend drinking some water after each bite
  • recommend ground or seem fluid food
  • recommend the use of feeding cups
  • recommend the use of straws
  • poor teeth, caries
  • recommend good oral and dental hygiene

     

  • fixation of the tongue which may result in choking
  • recommend not using food that is too liquid because of the danger of choking

     

  • poor intake of nutrients due to blistering in the mouth and bowels
  • recommend taking small portions
  • loss of taste
 
  • constipation
  • recommend food that is rich in fibre and copious fluids
  • unbalanced / Liquidised food
  • improvement of nutritional pattern and/or nutritional habits
  • dysphagia (swallowing difficulties) due to oesophagus strictures
  • use appetisers and vary the meals as much as possible
 
  • make an assessment of nutritional

    status and adjust nutritional pattern

 
  • tube feeding via silicone naso / gastric tube or a gastrostomy