Intervening Care

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April 2005

By Ginny Paleg, PT

Therapy for pediatric patients can continue at home.

Early Intervention (EI) is a federally mandated program for children from birth to 3 years old. Some states charge for these services by billing insurance or families, some are offered free. These programs began as a direct service model. Therapists, teachers, nurses, and other professionals treated the child as best they could during their 30- to 60-minute sessions that occurred one to four times a month. Services were originally provided at clinics, schools, and hospitals.

Quickly, it became evident that these medically fragile children were better served in their homes or “natural environments.” Continuing research drove even more changes, and today, early intervention teams strive to “coach” caregivers so that children receive appropriate stimulation throughout the day, not just during the one or two sessions with professionals. We are told that the best outcomes occur when the provider is able to improve the caregiver-child bond.

Teaching caregivers to look for cues to engage, responding to these cues, and ceasing stimulation when the child signals they are overwhelmed all result in better bonding. Research has shown that providers actually do a disservice to the family they are trying to help by bringing in expensive toys and “treating” the child. The best outcomes happen when the interventionist uses what is available in the home. The team gently, and unobtrusively, helps the caregiver learn to provide the right level of stimulation and interaction with the child. By stepping back and letting the parent or caregiver run the show, gain insight, and learn new skills that they immediately feel comfortable putting to use, the child gets the full benefit from early intervention.

This shift from a hands-on medical model to caregiver coach can be enhanced by the use of equipment that can be left in the home. All early interventionists should be acquainted with chairs, walkers, standers, and supportive strollers.

As children approach 4 to 5 months of age, they should be provided with a fully supported seating system. The best seat would provide truncal support but leave the head free. For children who are not making developmental milestones and are not expected to walk independently by age 3, a standing program should be initiated around 8 to 9 months of age.

THE BENEFITS OF STANDING
There are several excellent studies demonstrating the benefit of standing programs. However, some states and one large private insurance company have stopped paying for standing devices because they believe there are no published studies supporting static standing programs. While it is true that a dynamic standing program is ideal, many children are too medically fragile or low functioning to tolerate anything more than static standing. The two most powerful and convincing studies supporting standing are from Stuberg¹ and Pountney et al.²

Stuberg studied 20 children with cerebral palsy who were nonambulatory and using standing programs in their educational setting. He compared a group that stood for 30 minutes a day with another group that stood for 60 minutes a day. Both groups stood four to five times a week. The children did not attend school over the summer and therefore did not continue their standing programs. He found that bone density decreased in two groups, the children who did not stand at all, and the children in the 30 minutes per day program. Bone density was maintained in the group that stood for 60 minutes.

Pountney et al studied hip dislocation in children with cerebral palsy. Their paper presents a retrospective study of children with bilateral cerebral palsy who had various postural management and its effect on hip deformity. The most widely accepted theoretical model of hip subluxation/dislocation is that an imbalance in muscle length and strength around the hip leads to acetabular dysplasia and consequent hip subluxation. Maintenance of muscle length and strength and load bearing is therefore a logical prevention. Fifty-nine children with bilateral cerebral palsy were examined to determine whether a relationship existed between postural management and the level of hip subluxation/dislocation. Children who were positioned appropriately and moved throughout the day before hip subluxation occurred, maintained significantly more hip integrity than other groups.

At around 9 months of age, interventionists should introduce reciprocal stepping with trunk support and body weight support. There is enough evidence in the peer-reviewed journals to support this approach in children with Down syndrome, cerebral palsy, traumatic brain injury, spina bifida, and developmental delay to show that early independent mobility improves cognition, self-esteem, language, child/caregiver bonding, and peer interactions.

This is best done with a partial weight-bearing device that can be placed over a treadmill. Some studies merely have an adult hold the child over the treadmill.³ Similar benefits may also be derived from using a supportive walker. As soon as the child begins stepping on their own, a supportive walker should be made available in the child’s natural environment. The adults still needs to provide stimulation for stepping, motivation to move, and a reward when the desired behavior occurs. If inde- pendent ambulation is not expected to occur, power mobility training should begin around 12 to 15 months of age. If the child is not given access to equipment that allows independent mobility, critical periods of brain development pass and the child will be even more handicapped. By providing appropriate positioning devices that allow for independent mobility, we radically improve a child’s outcomes.

SPECIAL CARE FOR SPECIAL CHILDREN
The Family Infant Child Care Center (FICCC) is a medical day care facility in Rockville, Md. Ten years ago, my daughter was born full term at a birthing center in Bethesda, Md. It was a picture-perfect natural delivery, albeit in the middle of a blizzard. Things went wrong quickly and she was rushed in an ambulance—in the same blizzard—to the NICU. After many tests and weeks in the hospital, we were sent home with eight different medicines and an apnea monitor. I needed to get back to work as a pediatric physical therapist to help pay all the medical bills. Suddenly, I realized that no day care provider wanted my child. After weeks of searching, I found FICCC. Staffed by nurses and medically trained care providers, my daughter’s issues seemed small compared to her new friends. The children here have tracheostomies, ventilators, uncontrollable seizures, and many other needs. FICCC allowed me to return to work without additional worries, except for an extra 2-hour drive.

Fast forward 10 years, and I find myself back at FICCC, this time as the PT on an early intervention team. The center has grown and now has four classrooms that serve more than 20 families. This is an unusual early intervention site since so many of the kids receive services from two or more providers.

MICHAEL’S STORY
Michael, who passed away in December 20004, was a typical FICCC child. He was diagnosed before his birth with Pfeiffer syndrome. This is a syndrome of craniosynostosis due to a mutation in fibroblast growth factor receptor (FGFR). Michael had the typical characteristics of this syndrome: proptosis due to shallow eye sockets, underdevelopment of the midface, broad short thumbs and big toes, and ankylosis of the elbows and knees. He also had narrowing of his nasal passages, laryngeal and tracheal malformations, and hydrocephalus.

As with most children with Pfeiffer syndrome, Michael had many surgeries including one to relieve the premature fusion of the cranial sutures, shunt placement for hydrocephalus, a tracheostomy for upper airway obstruction, and surgical eyelid closure.

When Michael was born, his orthopedist believed his joints were fused and he would never be able to stand or walk. The early intervention team trained Michael’s caregivers and parents to use equipment to help Michael sit. His mother taught the team and caregivers that Michael could stand when supported and even take a few steps. As Michael’s PT, I searched for equipment small enough to allow Michael to stand and walk. We adapted an active learning center as a stander. We also introduced a small gait trainer. In just 2 weeks, Michael’s teacher was able to help him learn to move around in a gait trainer. The county provided a walker for Michael for home, but it was a little too big and hard to move on carpet. We located a tiny walker made for use on carpet manufactured in Winnipeg. Unfortunately, Michael died before it arrived.

We always worried about Michael’s breathing. He had a tracheostomy and a narrow windpipe. To help strengthen his accessory breathing muscles and to get him ready to push his new wheelchair, the county EI program provided Michael with a stander that he could push around himself. It was also a great way to stretch his tight hip flexor muscles. I trained the caregivers at FICCC who diligently put Michael in the stander, as well as the walker, and, again, in just 2 weeks, Michael was getting all around the classroom.

Early Intervention models that are flexible work best. These programs allow providers to do their best work in the environment that fits best with each individual child and family. Even in a medically based day care center, EI providers should educate themselves about, use, and provide appropriate equipment to help children learn about their bodies and their world.

Ginny Paleg, PT, works part time for the Montgomery County public schools’ Infants and Toddlers Program in Maryland. She teaches continuing education courses on standing, walking, and power mobility. She can be contacted by e-mail at .

REFERENCES

Stuberg WA. Bone density changes in non-ambulatory children following discontinuation of passive standing programs. In: Proceedings of the American Academy of Cerebral Palsy and Developmental Medicine Conference; Louisville, Ky; October 10, 1991. Rosemont, Ill: AACPDM.
Pountney T, Mandy A, Green E, Gard P. Management of hip dislocation with postural management. Child Care Health Dev. 2002;28:179-85.
Ulrich DA, Ulrich BD, Angulo-Kinzler RM, Yun J. Treadmill training of infants with Down syndrome: evidence-based developmental outcomes. Pediatrics. 2001;108(5):E84.