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Epidermolysis Bullosa
Home Care Programme

Materials & Medication

Nutrients

Introduction

This module describes different kinds of nutrients that may be used by patients with EB to obtain and maintain a good nutritional status.

It includes nutrients that are rich in protein, energy, fibre and iron and supplementary preparations and nutritional supplements. These products were mentioned by the various people who were involved in the KITTZ-project Epidermolysis Bullosa as the products mostly used such as:

• carbohydrate or protein extracts (or a combination): these can be added to the regular food;

• supplements: these are presented alongside of a regular diet to meet certain deficiencies;

• supplementary preparations: (liquid) food that supplements the regular diet or fully replaces the regular diet;

• tube feeding: when the patient is no longer able or allowed to eat or when the intake of sufficient nutrients in the normal way by normal food can no longer be realized.

 

Nutrients

Food rich in protein

The following nutrients are rich in protein:

• milk and dairy products such as (whole) milk, yoghurt, cream, cheese;

• eggs or products in which eggs have been incorporated;

• meat;

• soy products;

• bread (baked with wheat flour).

 

High energy food

The following nutrients are examples of high energy food products:

• bread;

• potatoes;

• pastas;

• rice;

• sugar.

 

Food rich in fibre

The following nutrients are rich in fibre:

• brown bread;

• dates;

• fruit (when possible unpeeled);

• vegetables;

• oatmeal;

• nuts;

• legumes;

• raw vegetables;

• rye bread;

• wholemeal biscuits;

• wholemeal bread;

• figs;

• dried subtropical fruits.

 

 

Food rich in iron

The following nutrients are rich in iron:

• all kinds of meat, especially organic meat;

• green vegetables such as broccoli, purslane, turnip tops, chard, spinach, broad beans, lamb's lettuce;

• fresh fruit;

• dried fruit;

• wholemeal products such as: wholemeal bread, rye bread, wholemeal biscuits, wholemeal Swedish crackers, wholemeal biscuit rusks, wholemeal gingerbread;

• rough grain products such as: oatmeal, Brinta, muesli, wholemeal macaroni, unpolished rice;

• all kinds of nuts;

• legumes such as kidney beans, marrowfat peas, lentils;

• all kinds of syrups, especially apple syrup;

• soft brown sugar;

• rose hip syrup ferro.

 

Carbohydrate or protein extracts

Building up mixtures and food sugars

Building up mixtures and food sugars (which are both available in liquid form) contain extra proteins or extra carbohydrates and can be added to hot or cold drinks and dishes. Building up mixtures are administered when there is a need for extra proteins, for example in the case of wounds. Food sugars are supplied when extra energy is required. Examples of building up mixtures are: Meritene® (liquid or powder), Citrotene®, Suprotal® and Fortify®. Examples of food sugars are: Fantomalt®, Nutrical® and Dexital®. There are also extracts available that contain extra proteins and extra carbohydrates. An example of this is Fortify®.

Thickener

A thickener can be added in powder form to (in particular liquid) food. Thickening of food may prevent asphyxiation. An example of a thickener is Thick & Easy®.

Supplementary preparations

Supplementary (liquid) food

Supplementary liquid food may be used when the intake of regular food is inadequate or when regular food palls on someone. The supplementary liquid food is used in addition to the regular food and can be distinguished between liquid food that is rich in protein or high energy food. Supplementary liquid food is available in different flavours and is generally consumed cold. Supplementary liquid food usually contains little fibre. Examples of supplementary liquid food that is rich in protein are Fortimel®, Addital® and Meritene®. Examples of supplementary high energy liquid food are: Ensini®, Nutridrink® and Juicytal®.

Exclusively liquid diet

An exclusively liquid diet may be used when the intake of solid, ground or pureed food is no longer possible. In this case, the exclusively liquid diet is used as a complete substitution for regular food. Exclusively liquid diets are available in different flavours from fruity to sweet and savoury. Depending on the patient's preference the liquid diet products may be drunk cold or hot. Most liquid diets contain little fibre but there are liquid diet products that have been fortified with fibre. Examples of exclusively liquid diet products are: Nutridrink(fibre)®, Envital(fibre)®, and Nutrodrip®.

 

Supplements

In addition to regular food, supplements are also administered to meet specific deficiencies. Examples of specific deficiencies that occur in EB-patients are: iron deficiency, fibre deficiency and vitamin deficiency.

Examples of supplements are:

• iron preparations: for example Roosvicee ferro (liquid) or Ferrograd®, Davitamon® etcetera. A drawback of iron preparations is their binding effect which means they can cause constipation;

• fibre preparations: for example bran, wholemeal muesli, Metamucil® etcetera.

• vitamin preparations: for example Supradyn® effervescent tablet.

 

Tube feeding

Tube feeding is administered when a serious delay in growth (especially in children) cannot be resolved by conventional means. The formula may be administered by means of a naso / gastric tube or a gastrostomy.

The following formulas are described in the section Specifi-cation of materials:

• Nutrison Pre®;

• Nutrison Standard®;

• Nutrison Energy®;

• Nutrison High-Protein®;

• Nutrison Multi Fibre®;

• Nutrison Paediatric Standard®;

• Nutrison Paediatric Energy®.