|Sharon Pratt, PT, checks client, Hunter, for pelvic asymmetries, including rotation, elevation, available range of motion, and postural tendencies.
At the time of his initial assessment, the client, Hunter, was a 30-month-old boy with level IV (severe) cerebral palsy. He had dystonia, which presented as truncal hypotonia with extremities that fluctuate between total flexion and extension patterns, including torsion (twisting, which is assessed using the Barry-Albright dystonia scale). Hunter was nonverbal and had difficulty hitting a switch consistently. At the time of this evaluation, he lived in an accessible first-floor apartment with his mother, who was expecting another baby. Hunter was attending special day care—staffed with nurses and specially trained teachers—and was being driven there daily by his mother. Hunter will soon transition to a school-based program, and will ride a school bus every day. Since he is no longer comfortable in his infant positioning system, the purpose of this evaluation was to select a positioning system that will meet Hunter’s needs for the next 5 years.
The mat evaluation (conducted by the author and Sharon Pratt, PT) revealed a troublesome left hip. The client’s hip could not achieve 90° of flexion without pain. His hamstrings were so tight that his knees could not tolerate positioning at 90°. When he sat with his hip angles at 90° on the right and opened 10° on the left, and his knees at 20° past 90 (lots of flexion so that his feet are under the system), Hunter was comfortable. Once his level of stress and pain decreased, so did his tendency to posture into extreme extension. Hunter has never crawled or pushed up into prone on his elbows, so he has not developed normal spine curves. This will put him at risk for scoliosis if he sits upright all day with decreased ability to distribute the load along his vertebrae. A biangular back allowed his hypotonic trunk to be supported posterior to his pelvis while his sacrum was maintained upright.
A Seattle-based company makes a dynamic pelvis positioner that could also allow the pelvis to move during dystonic episodes but help the pelvis to return to neutral. Any day now, this product will become available for young children like Hunter. Dynamic seating is now commercially available for children. When he was seated in this demo model from a company in Colorado, the chair moved with Hunter into extension and then the springs assisted him to return to his neutral position. This system was launched this year at the International Seating Symposium in Orlando, Fla, and may be a great solution for a child like Hunter—who needs to move.
|At right, Pratt adjusts Hunter in a lightweight system, which not only provides positioning, but is crash tested and fully WC-19 compliant. However, a car seat is still the safest transport option.
Once we knew the product parameters we needed, we contacted a seating company in Baltimore that fabricated the perfect system, then donated it to Hunter in a brand-new tilt-in-space base made by the parent company in Colorado. The big problem was the bus ride. Hunter looked great in this chair in class, but when he fell asleep on the bus, his head fell forward and partially occluded his airway. On the bus, Hunter was positioned facing forward (the safest position) in his wheelchair and his tie-downs were attached to the WC-19 compliant securement points. (We were smart enough to order the transportation option.) But the positioning belts on the wheelchair that make Hunter comfortable are not strong enough to hold him safely in the event of a crash or sudden driving maneuver. “Best practices” recommend that he use the bus lap/shoulder belt to keep his body safe for transportation, but his head still fell forward. We could have tilted the chair back to 45° for him to be able to stabilize his head, but the transportation experts at the University of Michigan, www.rercwts.org, recommend a tilt angle of no more than 30°. Even at this reduced safer angle (30°), the shoulder belt was not able to pass snugly across his shoulder and waist.
Hunter’s mother wanted to use a soft collar to stabilize his head on the bus. The University of Michigan experts recommend a soft cervical collar but not the type that extends to the chest. The collar Hunter uses (see photo) has long lever arms that stabilize at least five vertebrae. In the event of a sudden stop or crash, these vertebrae will be unable to help absorb the forces. A huge amount of shear will occur at the vertebrae just above and below this collar, putting the tissue and spinal cord at high risk. The best option is a shorter soft foam collar. Never attach the head to the chair. These systems allow for no motion in a crash and can result in serious injury.
Area of Concern
Ankles, foot, toes
Short brace (SMO) to allow gastroc/soleus to move and maintain strength.
Solid AFO and knee immobilizer (alternate each side every other night) to stretch gastroc and soleus. May need Botox and/or muscle relaxer upon initiation to allow tolerance.
7.5 hours per week in a stander with slight hip flexion to allow for a hamstring stretch. Long sitter for 30 to 45 minutes three to five times per week.
Knee immobilizers at night. Use soft bed cuffs to ensure neutral rotation and slight abduction at the hip. Also, reduce hip flexion as much as possible.
7.5 hours per week in a stander (beginning at 9 months of age) to allow for proper acetabulum and femoral head development. Slight abduction (10°) may activate gluteus medius and aid in hip development.
Use soft bed cuffs to ensure neutral rotation and slight abduction at the hip. Also, reduce hip flexion as much as possible. May also use a foam wedge or other system to keep hips in abduction and neutral rotation and flex/extension.
Make sure curves are supported, especially if they have not fully formed.
A soft TLSO or Benik body splint may be a good way to keep the spine stretched out at night.
Sidelying and prone (for at least 15 minutes per day) can help keep heads the proper shape in babies less than 1 year old. In older children, these positions can offer a nice change in load patterns.
A gel donut ring can help prevent flattened, misshapened heads (plagiocephaly) in babies who are positioned in prone all day and night. Some infants require 23 hours per day of a special helmet to reshape their heads.
|Despite best efforts, Hunter is not safe on the bus in this chair.
The safest way for Hunter to be transported on the bus and in his mother’s car is in a car seat. Make sure the car seat is appropriate for the child’s height and weight. There are four car seats on the market made especially for kids like Hunter. One (from a company in Matthews, NC) is very well-cushioned and reclines. Two (from a catalog company in Bollingbrook, Ill) are extremely easy to clean (but not crash tested with the tray or footrests) and can be used in mobility bases, including one that is crash tested. The last one, which we chose for Hunter, can be placed in a few different mobility bases. This car seat (made in Santa Fe Springs, Calif) can be fitted with custom-molded laterals so Hunter can be positioned optimally and held safely in the event of a sudden stop or crash. As Hunter grows and weighs more, he will need to progress from the car latch belts (these usually work only for children weighing up to 40 pounds—check the label). When the child weighs more than 40 pounds, you have to go back to the car dealer and install a stronger tether (it will generally come with the special needs car seat), and you cannot use the lower anchors, either. LATCH (lower anchors and tethers for children) eliminates the need to use seat belts to secure the child car seat to the vehicle. However, your vehicle must be fitted with the anchor system. Starting in the year 2002, most new vehicles began to be manufactured with the LATCH system installed. LATCH is not necessarily safer than using seat belts to secure a car seat, though it may make it easier to achieve a safe installation. A child car seat retailer will be able to advise you on suitability for your vehicle. Many of the child car seats that are currently available can be used with both the LATCH system and regular seat belts. So, if you have two cars (one with the LATCH system and one without), but have only one car seat, you will want to find a seat that works with both restraint mechanisms. Be aware that your special needs car seat may come with the components for the LATCH system, but your child may be too heavy and need a different system.
|The chair above appears linear, but it is not. Its biangular back will help distribute load along Hunter’s spine, even without a lumbar curve. Also, different densities of foam have been cut and layered to ensure the pelvis and femurs are immersed.
Hunter’s mother does not have a lift for her van. His current wheelchair is very heavy and is not easy to fit in the van, especially with his baby sister’s stroller. For short jaunts to the store and weekend outings, Hunter’s mother prefers a lightweight system that folds like an umbrella stroller. When Hunter and his mother use public transportation, or if Hunter uses this system on the school bus, his mother wants to be assured that it is fully crash tested and WC-19 compliant.
One company in Torrance, Calif, that manufactures foldable, lightweight chairs offers crash-tested versions of all of its models. It also offers free training for therapists and bus drivers on transportation safety. (For further information, call 888-266-8243—ask for the education coordinator, Nancy Smith.)
TYPICAL 24/7 POSITIONING SCHEDULE
Hunter has a body that is prone to contracture and deformity. Research has shown that the best prevention is an aggressive defensive approach that includes at least 6 hours of stretch of all his “at-risk” muscle groups and joints. He will use a stander for 7 hours per week (Snyder) to maintain his bone density and stretch his spine and leg muscles. He will use a special bed (one made by an Irish company sold in the United States through a catalog company in Bollingbrook, Ill; the other made by a company in the UK and distributed in this country by a company in Seattle); it has a custom positioning system that will keep him cool and distribute his weight better. Soft, elastic cuffs will help him stay in a comfortable, yet therapeutic position. When Hunter is comfortable, he will sleep better and be more alert and happier during the day. So will his mother, and this is really good!
REALITY OF FUNDING
|The car seat above allows you to add custom-molded laterals for optimal client positioning.
The truth is, Hunter’s insurance would pay for only one system. It took more than 8 months to convince the payor that his infant system could no longer accommodate his needs. So how did we get a lightweight system, stander, gait trainer, bath chair, activity chair, and power chair? Begged, borrowed, and wrote grants. As the funding from medical insurance tightens, we all have to be more aware and savvy about alternate routes of funding. The highway is under construction; it is time to learn the back routes and dirt roads. One back route is the Individuals with Disabilities Education Act (IDEA)—the school is required to provide systems in school if the child does not have one. I work for a school system: I know this is not easy, but it is the law. Another back route is private grants and funding. Your local lodge or Rotary Club is looking for a good cause. Your child’s positioning needs are perfect. Sometimes you have to write a grant to a big local company (a national retail store, a bank, a manufacturer). I can help—if you have a shell that has worked, please e-mail me; and if you need a shell, e-mail me.
The dirt road is the most complicated. You ask around or dig in your closet and use an old system. This is called equipment recycling. We do it because we care and want to help the child. Just realize that you may get more than you bargained for. By “making do” with something that is not perfect and allowing the third-party payors to deny funding for a medically necessary item, you are letting the child and the system down. Be aware of FDA rules that mandate that the manufacturer knows who is using the equipment. A good recycling program has funding for the equipment to be inspected by the manufacturer. Do you know the proper screw pressures? Can you be sure the gas spring will not fail? Protect yourself when using “group” equipment, and have your local dealer help you and pay them to do this. Everyone will be better off in the end.
In conclusion, we do not live in a candy store anymore. We have to pick wisely and make sure that everyone (family, school, caregivers, and therapists) will be able to safely use the equipment. Please inspect your child’s equipment often (at least monthly), and schedule an equipment clinic at your site with the vendor who sold it to you. Walk through the school bus and see how the children are being transported and where the bus drivers are tying down the chairs.
Be safe out there!
Ginny Paleg, MS, PT, a pediatric physical therapist with the Montgomery County Infants and Toddlers Program in Rockville, Md, is a reimbursement representative for the pediatric section of the APTA, and teaches continuing education courses for several DME manufacturers. Paleg also is a member of Rehab Management’s editorial advisory board. She can be reached at .