Young smiling child in wheelchair

Determining the Specific Nutritional Needs of a Child Who is Wheelchair Bound or Bedridden

Children who are wheelchair or bed bound present particular problems both in giving them the food they need (because as many as 90% have swallowing issues as well), but also in determining just how much they need, because they aren't using up calories and nutrients in the same way as children who are active and needing more energy.

As we discussed in Nutrition For Children Who Are Wheelchair Bound or Bedridden, children who are disabled have nutritional needs and considerations that extend beyond that of healthy children. These include: their difficulty chewing and swallowing that can continue to and through adulthood and that makes them prone to aspiration of their foods and fluids into their lungs; the problem with gaining adequate weight early on because it is so difficult to feed them enough calories; and later, the problem of giving them enough nutrients while not giving them too many calories, because too much weight gain puts more stress on their breathing and makes it difficult to help them move back and forth into their wheelchairs.

Goals of Intervention
  • Physiologic maintenance
  • Rehabilitation of malnutrition
  • Prevention or correction of nutritional deficiencies
  • Assist ease of care
  • Support caregivers in their efforts
  • When possible:
    • Tailor weight/growth to home care need
    • Treat feeding problems and behaviors
    • Assist development of self-feeding skills
    • Regulate bowel habits
The Medical and Nutritional Evaluation

A thorough history and physical examination is needed to make sure there's no evidence of malnutrition or specific nutritional deficiencies. The evaluation may also help recognize what might be contributing to the problem.

You can help by providing all the pertinent facts from the child's past (see the History section of the Medical Evaluation list at the bottom of this article) that document the child's condition(s). The child's medications should be noted in detail, since as many as 25% of people who are wheelchair or bedridden who receive anticonvulsants (seizure medicines) may have rickets. The child's level of function and oral motor skill should be noted. Include the time it takes to feed your child, your ability to continue, and the quality of the interaction during mealtimes. If there are other caretakers at home or school, the success of those feedings should be noted as well.

The dietary history, including a three day food record, should document the child's actual intake, supplements, and schedule. Here's a link on how to create a food log or food diary. Also note any intolerances, preferences, changes in appetite, activity, intake, oral function or weight. The child's bowel habits may have an important relationship to the feedings and should be noted.

Your doctor will want to know about any evidence of regurgitation, choking or possible aspiration, so that these can be evaluated further. For a better understanding, your doctor or a therapist may want to observe while your child is eating. If there is any question about the child's ability to chew or swallow, an x-ray, called a swallow study or OPMS (OroPharyngeal Motility Study) evaluates his or her oral mechanics and the ability to protect the airway. An Upper GI study sometimes follows to watch the food descend into the esophagus and stomach if there is suspicion of something wrong there. When necessary, a pH esophagram helps in evaluating gastroesophageal reflux; and a gastric scan may be needed to determine if there's a problem with stomach emptying or to look further for aspiration with the feeding or with reflux.

Findings on Physical Examination

A thorough physical examination will be looking for any malnutrition, specific deficiency states or scoliosis. The doctor will also be evaluating the look and feel of your child's skin, the muscle tone and level of neurological function in addition to the usual assessment of the child's lungs, heart and abdomen. If a feeding tube is in place, the site will be examined for redness, swellings, leakage or rashes.

Measurements of your child's height and weight, when possible, will help to confirm your doctor's impression about your child's weight gain, growth and general nutritional state. The child's actual weight as a percentage of what would be the ideal weight for his or her height can be used to screen for malnutrition:

Level of Malnutrition% of Ideal Weight for a Child of Equal Height
MildLess than 90%
ModerateLess than 80%
SevereLess than 70%

The point of recognizing malnutrition is to determine what can be done to correct it and bring the child into a healthier state, and to alert the physician to look even more carefully for other nutritional problems. One problem is that it's often difficult to accurately measure the height of someone who is wheelchair or bed bound. And so some growth measurements are based on just using the lower leg to measure growth. Another is that it's difficult to decide on the ideal weight for height in those who have neuromuscular diseases. In healthy individuals, the 50th percentile of weight for height makes sense as the ideal weight. But in those with conditions that keep them thin, that comparison isn't fair and may overestimate the ideal weight. That becomes very important, not just in determining whether malnutrition is present, but also in recommending the best feeding prescription for each child. Fortunately, specific growth charts are available for cerebral palsy that take into account whether the child is tube or mouth-fed and the child's mobility (walking or wheel chair bound). New charts are being developed for children with Down's syndrome and should be ready soon. More sophisticated measurements are also available to measure muscle, fat and energy stores.

Laboratory tests

Fortunately, protein status is usually normal when measured. Unfortunately, most other blood tests, such as Vitamin B12 or zinc levels, have limited use in the wheelchair and bedridden. The tests primarily measure the quality of the diet, and don't tell us much about actual insufficiencies, which are more frequent problems for these children. The one blood test that is particularly meaningful is the hemoglobin that can detect iron deficiency anemia, which is common. A hand /wrist x-ray may reveal bone weakness (osteopenia or osteomalacia). The x-rays are often more sensitive initially than calcium, phosphorus or bone enzyme levels. When the child is on seizure medications, anticonvulsant levels and liver / kidney function studies can also be obtained, since they can be affected by these medicines.

MEDICAL EVALUATION FOR NUTRITIONAL ABNORMALITIES

HISTORY

  • Illness, level of function
  • Oral motor skills
  • Medications, Associated conditions
  • Bowel Habits
  • Dietary / Feeding History
  • Appetite / Intake / Schedule
  • Allergies / Intolerances / Preferences
  • Nutritional / vitamin / mineral supplements
  • Changes in Activity, weight, appetite, function
  • Problems with feeding, swallowing, reflux

PHYSICAL (in addition to routine)

  • Height, Weight, (Skinfold thickness to measure muscle/ and fat)
  • Observation and General impression
  • Abdomen for constipation
  • Spine for kyphoscoliosis, sacral anaomalies
  • Neurological for tone and level of function
  • Oral for gag, swallow, seal, drooling, mucosal problems
  • Signs of Nutritional Deficiency State (Table 2)

LABORATORY (when needed)

  • Complete Blood Count
  • Proteins: Albumin (long-term nutrition) , Transferrin (nutrition in past week-rarely)
  • Calcium, Phosphorus, Alkaline Phosphatase
  • Vitamin, mineral levels (rarely needed)
  • Anticonvulsant levels
  • Radiography
    • Xray of Hand for rickets and bone weakness
    • Ultrasound or Scan of head for hydrocephalus
    • Gastric Scan (with 2 or 4 hour films for aspiration)
    • Swallow Study / Upper GI
  • pH Esophagram for Reflux

Complete Blood Count Proteins: Albumin (long-term nutrition) , Transferrin (nutrition in past week-rarely) Calcium, Phosphorus, Alkaline Phosphatase Vitamin, mineral levels (rarely needed) Anticonvulsant levels Radiography Xray of Hand for rickets and bone weakness Ultrasound or Scan of head for hydrocephalus Gastric Scan (with 2 or 4 hour films for aspiration) Swallow Study / Upper GI pH Esophagram for Reflux

Dr. Stan Cohen13 May 2015

Dr. Stan Cohen is one of our founders and our CEO as well as the Chairman of our Medical Advisory Board. Dr. Stan is an internationally recognized expert in Read more

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