Children with physical challenges, especially those with the diagnosis of spina bifida, have a special concern within the societal trend of obesity that can have grave consequences. The orthotic profession is faced with being a part of this challenge, but more importantly can play a strategic role in the solution.
Incidence of obesity
According to the Spina Bifida Association fact sheet on obesity, at least 50% of affected children have a likelihood of being overweight beyond age 6, and from adolescence through adulthood more than 50% of those affected are obese. Those with hydrocephalus – a common co-existing condition that causes a buildup of fluid inside the skull, leading to brain swelling – have an even higher risk.
In general, when there is less physical activity due to the disability, but the food consumption is not altered, then the result is weight gain. The basic metabolic rate for older children with spina bifida is slower, partially due to less muscle mass, requiring a higher physical activity level to lose weight.
Lower level
Parents entering the medical world of spina bifida are hopeful of normality for their child. The milestones of crawling, cruising and walking are often delayed at best, and usually not achieved without the aid of orthoses. Those children with a lower-level spinal lesion may function well with solid ankle AFOs. They begin a relatively normal and independent walking pattern at an early age, accommodating the neural deficits characterized by a “waddle gait” and possibly aided by crutches or a walker. Hopefully this function will remain intact with growth and these children will potentially be active enough to avoid a weight gain issue.
The perpetual threat of a tethered cord that can alter the capabilities of ambulation is ever present. Obstacles such as school systems that won’t allow crutches in the hallways for fear of falls and time factors forces the use of wheelchairs. This regiment of long-term sitting versus short-term walking can contribute to contractures that compound the whole challenge of a healthy lifestyle.
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Higher level
Children with higher spinal lesion levels of spina bifida ultimately will spend most of their time in a wheelchair and therefore are more at risk of being overweight. The cycle of a sedentary lifestyle is immediate, but optimism prevails at first. The stander or parapodium with AFOs initiates weight bearing, essential for bone development. The prescription for RGOs at around 2 years of age generates
enthusiasm
from families that their child will indeed walk. After a successful fitting and physical therapy, the walking program has begun. The challenge of maintaining a walking routine increases as the child grows. The brace needs to be adjusted every few months or replaced for growth, creating down time from the routine. Between ages 2 and 9, the usage of RGOs continually decreases from a few hours of wear time per day to a couple times per week at therapy. Reasons for this decline include difficulty in donning and doffing, maintaining a proper fit due to weight gain, growth, contractures and the battle with the child to wear it because it requires so much effort. Eventually the child and the parent reject the RGOs for the ease of wheelchair usage, which contributes to the problematic weight gain.
Routine challenges
A collateral danger of spina bifida is skin breakdown due to areas that are insensate. Osteoporosis, secondary to lack of weight bearing, and the resultant potential for bone fractures is also a threat. Whenever there is increased weight, the probability for incidences becomes even greater.
Children are especially negligent due to little awareness of their bodies and can often incur a wound that they don’t feel, and let it fester into a serious infection.
What the orthotist can do to help in these situations is to provide custom AFOs that can evenly distribute the weight of the child so the heel is not taking full brunt of the impact. Shock absorbing cushions may be needed on the plantar surface as well as valgus or varus pads to maintain proper alignment to reduce potential skin breakdown. The children need to take on the responsibility of visual checks on the skin integrity at an early age, a direction of care that can be reinforced by the practitioner.
Guidance
This scenario is not what the parents were prepared for, so they often turn to their trusted orthotist for guidance. Recommend a mobile stander that requires only AFOs for support and adjusts easily for growth to provide weight bearing, mobility and upper extremity exercise. Get an early start on preparing families of the potential detriments of weight gain for their child so eating and exercise habits can be monitored from the beginning. Seek a local nutritionist to refer the family so the everyday diet concerns can be modified to fit the circumstance.
Family involvement
There are numerous activities that the individual families can participate in without too much special equipment. Tennis, basketball, volleyball and track events can be accessed in a wheelchair. Swimming is an excellent event that involves the family and with the use of flotation devices, can take the stress off of the caregiver. Always recommend covering the feet for protection from the pool surface. Hand-propelled tricycles or competitive racing chairs are good investments and incentives for maintaining healthy habits. Suggest home activities such as interactive computerized fitness programs that promote exercise and coordination skills.
Resources
The practitioner has an opportunity for leadership by providing a network of sources to aid in the direction of achieving and sustaining a healthy lifestyle for the child in need.
Post listings of adaptive sports and activities in your community for physically challenged children. If there aren’t any, sponsor one by networking the families within your practice that have similar conditions. Contact the local YMCA to encourage inclusion for special needs children or establish a designated camp event.
Provide information on competitive sports for the disabled. The National Junior Disability Championships brings children with disabilities together from all over the nation to compete in track and field events. Local groups can be formed to join in this friendly competition.
Emphasize the adult Paralympics to support the awareness of achievable goals through persistence and hard work. Establish a mentoring network of adult athletes, physically challenged or not, who have interests in helping this population of disabled kids.
Incorporate a decorative theme in the patient care and waiting areas of your business with poster and art displays of activities for the physically challenged. Set up a television for playing videos of the Paralympics and numerous events that feature athletes with disabilities.
Encouragement
An orthotist in the realm of spina bifida does not have a crystal ball that sees the future of the patient treatment. Unfortunately, the statistics prevail for those who will suffer because of obesity. Breaking this chain of events will require a team effort with the focus of the child in the center.
Being involved as a strategic player is one key to the success or failure of a healthy lifestyle for the child with spina bifida. Encourage the possibilities not the limitations.
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