We are truly amazed by the relationship of parents and their children who are confined to a wheelchair or bed (and the parents of children with other neurological or developmental problems as well). These parents are real superheroes or martyrs, who have so much to teach the world. But they don't usually see themselves that way. They merely consider themselves as loving parents who have been gifted with a special child who needs their constant care and support. Not that they don't get frustrated or angry or tearful. But somehow they manage.

And they manage to teach the rest of us as we watch them go about their daily tasks. And while it might not be politically correct (or correct at all) to say this, I've often thought that we might not need as many psychiatrists and counselors if their patients or clients could spend a day helping these parents minister to the needs of their children. In fact, many parents tell me that they feel less burdened after sitting in my waiting room seeing a parents and their wheelchair bound child smiling together as the parent gives a feeding or wipes the child's mouth.

NUTRITIONAL NEEDS OF WHEELCHAIR BOUND CHILDREN

Many of these children have Cerebral Palsy and are often termed "developmentally disabled," or as Dr. Dwayne Blackston, a colleague in the Georgia chapter refers to them, "differently abled." Approximately 25% had feeding problems in infancy as their first symptom. And they have ongoing nutritional needs that have to be carefully addressed in order to improve their care.

The basic nutritional goals for someone who is wheelchair bound are similar as for any healthy child: maintain metabolism (including hydration), and provide sufficient energy to withstand stress, and correct and prevent any deficiencies. But there are additional needs and considerations. The disabled child may face other issues: aspiration of their food and fluids into their lungs, if they have difficulty swallowing; difficulty with self-feeds and oral skills that may require assistance; and regulation of bowel movements, particularly if he or she isn't able to be toilet-trained. Additionally, many developmentally disabled patients are totally dependent on their caretakers, including for mobility. Thus, an overweight child or even one who reaches full adult proportions may be at risk for ulcers where their tissues press against the wheelchair or bedif they cannot be moved; or their caretakers may be at risk for injury (hernia, back, or coronary), with the repeated strain of moving and positioning them. And the excess weight adds extra work for their lungs and heart.

The time of greatest nutritional risk are in early infancy and then again in the second decade of life, due primarily to feeding problems. In infancy, low body tone (hypotonia) or increased body tone (hypertonia) often makes it difficult for some of these babies to acquire the oral and swallowing skills that are needed to feed successfully.

FEEDING AND SWALLOWING DISORDERS: CONTRIBUTING FACT0RS
  • Problems with the mouth, face, esophagus (example, Cleft palate)
  • Problems with the way they function (example, increased or decreased oral sensitivity)
  • Neurological problems (examples, seizures, poor tone or coordination)
  • Other medical problems (examples, heart or lung disease causing exhaustion)
  • Behavioral problems (example, irritability or resistance)
  • Environmental considerations (example, parent's emotional or mental disorder)

The problems for the older patient come because they need more food (more nutrients and calories because of their increased size, which requires more effort and time to eat-which can wear them out, and their caretakers too).

MALNUTRITION NO LONGER

In the past, severe malnutrition was accepted as a part of their disabilities. But now, advancements in feeding technology (often with tube feedings) have changed that view. Several studies demonstrate that increased nutrient intake can improve:

  • Weight,
  • Muscle mass and function,
  • Energy stores,
  • Peripheral circulation,
  • Immune status and
  • General well being,
  • While decreasing their irritability and spasticity.

But even with improved nutrition, children with cerebral palsy and other disabilities often do not grow as well in height well and they still often recover slowly from illnesses.

Here are some links to articles we've posted related to the nutritional needs of wheelchair bound and bedridden children:

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

Food Plans For Wheelchair Bound or Bedridden Children Who Can Eat

Homebrew (Blender-Made Formulas) for the Child Who Needs Additional Nutrition

Tube Feeding (Enteral Nutrition) for Children: Types of Tubes, How they Work, Types of Feedings and Tube Care

These articles are based on work by Stan Cohen MD and Aruna Navathe RD and the chapters they wrote for the Medical Care for Chlldren and Adults with Developmental Disabilities, and Pediatric Gastrointestinal and Liver Disease and for which Dr. Stan received the Lewis E. Jones Award from the Atlanta Alliance on Developmental Disabilities.

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

More on Nutrition for Wheelchair Bound, Bedridden and Tube-fed Kids