Your child’s primary physician will monitor weight and length. A dietician can review nutrition. An occupational therapist and speech therapist have training in sensory and motor issues of the mouth for assessing feeding skills. A speech therapist and radiologist can assess for aspiration. An endocrinologist can assess problems that alter growth. A gastroenterologist and/or complex care and palliative care clinicians can help guide the decisions regarding feeding tubes.
Changes in Feeding Skills
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Whether your child eats by mouth or is fed partially by tube, you may notice some changes in your child’s feeding skills and tolerance over time. These could include how well they control food or liquid in their mouth and how much they’re enjoying it. When children seem to have more trouble controlling the food or liquid, or have had a decline in feeding skills, modifications in textures of the food presented or flow rate of the liquids may be recommended and could make a big difference in your child’s comfort and safety. Choosing the most successful texture of liquid (thickness) or food for your child can often lead to improved enjoyment as well.
Aspiration
Food or liquid that enters the airway is called aspiration. Your medical team may recommend that your child undergo a study assessing their ability to protect their airway during swallowing and prevent aspiration. A speech therapist, along with a radiologist, performs this modified barium swallow study (MBSS). Your child will be positioned in a supportive seat based on their size, and will be given barium, an X-ray absorber that shows white on the X-ray screen. The barium is mixed into foods and liquids, and a moving picture X-ray indicates how well the airway is closing as your child eats and drinks. This study can assess whether modifications to the texture of liquids or solids could improve airway safety.
Modifications
Some children may tire before they can orally take in sufficient calories at a meal. There are many items available that could add extra calories and/or nutrition to your child’s diet. This not only may reduce the quantity of food your child needs to ingest, but also may reduce the stress you both experience in trying to get in all the variety and volume that has been recommended. Examples include
- Benecalorie (unflavored fat and protein powder)
- Polycal (unflavored carbohydrate powder)
- Duocal (unflavored carbohydrate and fat powder)
- Variety of high-calorie formulas
Some home products that may be recommended for adding thickness, calories and nutrients with minimal change in texture could be:
- Infant cereal (fortified with vitamins and minerals)
- Full fat yogurts
- Higher calorie purees such as avocado, sweet potato or banana
- Ground wheat germ or flax seed
- Adding heavy cream, sour cream, cream cheese or coconut cream to cooked cereal,
- Mashed potatoes, eggs and cream soups
- Adding nuts or seed spreads or powders mixed into purees
It is a natural instinct to want to feed your child, and to see them enjoying their food. As difficulties in drinking, chewing and swallowing food creep in, you may feel sad and frustrated. It may take longer to prepare your child’s food and to feed them. You may notice that they are enjoying their food less at the same time you are noticing your own feelings about the process. You also may be alarmed by a decline in weight as your child shows less interest in food. This is a good time to talk with your medical team about finding a balance between maintaining your child’s nutritional needs with the pleasure that comes with eating and feeding others.
