Pediatric Prosthetics - a collection of considerations; Early Fitting is Key to Success
The ideal time to fit a prosthesis for a child with congenital limb deficiency is at the age of six to seven months, or whenever the infant is able to sit independently. Before that, however, it is necessary to orient the mother and father as to the importance of prostheses and to the choices among various types and components. Parents are often full of questions and should be given adequate information early.
As an occupational therapist, I firmly believe that every child should have the opportunity to wear a prosthesis, especially early in life when, developmentally, it will be of most benefit. If the parents wait until the child is perhaps five years old, the odds that the prosthesis will be sufficiently used are diminished significantly. Early fitting is clearly the most vital factor in achieving a successful outcome.
Also essential is that whomever is introducing prostheses to the parents and explaining the pros and cons of different kinds be completely impartial. This person should simply present all of the facts so that parents have comprehensive information on which to base informed decisions for the child.
I do not feel strongly that myoelectrics are preferable to body-powered upper extremity prostheses - that one is necessarily better than the other. The type of prosthesis with which a child is presented often depends on the opinions of the parents in conjunction with other members of the rehabilitation team. Each situation is highly individual.
I am personally seeing a definite trend to fit children with myoelectrics versus body-powered prostheses. Parents want "only the best" for the child and may feel that myoelectrics are the only acceptable option. If finances are available through insurance or personal funds, I see no objection to prescribing myoelectrics.
A possible contra-indication is if the deficient limb is particularly long - for example, one that includes bones of the wrist and/or hand, as in a partial hand amputation. These cases are extremely difficult to fit because of the space needed for the motor and battery of a myoelectric prosthesis. Without sufficient room, the prosthetic arm could be longer than the other one, and that would be a problem.
I recall one incident in which a little girl was limb deficient as well as severely retarded. In this situation, a myoelectric prosthesis was inappropriate because it requires sufficient cognitive skills to learn to use this type of prosthesis. Another drawback to a myoelectric might be inadequate family support. Substantial one-on-one attention is needed to help a child acquire myoelectric proficiency.
Generally, pediatric myoelectrics are simple and durable enough as long as the prosthetist and therapist have oriented the parent and child in the use and care of the prosthesis. Naturally, little children must avoid activities involving dirt, sand, and water when wearing a myoelectric arm. However, these factors should not deter prescribing this device.
If enough money is available, the best option is to fit the child with both a myoelectric and a body-powered limb. However, because of restrictions imposed by managed care organizations, usually only one is permitted. Sometimes, it is difficult to get approval from a managed care organization for a myoelectric prosthesis. And some MCOs will only reimburse for one prosthesis in a lifetime, although that's more likely in the case of an adult.
MCOs are gradually learning that prostheses are outgrown and wear out, so more than one would be required per person. Sometimes it just requires a strongly worded letter of medical necessity from the physician to get approval for a myoelectric. At other times, it may be hard to justify a myoelectric over a body-powered device.
In fitting infants, the first prosthesis is usually a passive hand. Then, at nine months, the child would get a single-control "cookie crusher." Not until perhaps age 18 months would the child receive a more complicated two-state device. The average lifespan of a child's prosthesis is 1 1/2 to 2 years, based on the child's rate of growth.
One helpful means of economically replacing prostheses is a limb bank. This is a concept which is growing slowly. The Variety Club in Houston maintains such a resource and will pick up the cost, depending on the family's economic status. There is another Variety Club Limb Bank in Detroit, and various smaller ones throughout the country. Further, the women members of Rotary International are in the process of organizing the Inner Wheel Foundation Limb Bank which would administer a national program.
Even with this recycling of prostheses, however - the prosthetist still must make a new socket and recondition the hand components, so the price is not greatly discounted. A new myoelectric prosthesis can only be adjusted for growth up to a certain point, and then it's outgrown.
A child's new below elbow prosthesis doesn't cost substantially less than an adult's - between $10,000 to $25,000. The price of an above elbow prosthesis that incorporates an electric elbow joint is nearly twice as much. So, yes, the cost of pediatric myoelectric prostheses is surely a consideration.
Why do parents insist on them? Because of the way they look. They look far more like a real hand and arm. As far as the child is concerned, it doesn't really matter-it makes a difference to the parents.
In terms of prosthetic use and proficiency, it's fine to start a child on a body-powered prosthesis and then switch to a myoelectric when the youngster becomes more aware of appearances and could be self-conscious about a limb deficiency.
However, most parents now start children on a myoelectric and stay with it. Unfortunately, there have been few retrospective studies done to see whether the young child continues wearing the myoelectric arm through adulthood. Most of our information on prosthetic use is merely anecdotal.
What we do know, however, is that early fitting is crucial. Waiting until a child is school age is not likely to be successful. The odds against being able to use the prosthesis functionally increase greatly with each year after birth.
The above article is based on an interview given to InMotion Magazine by Diane Atkins, OTR, a prominent occupational therapist at Houston's Institute of Rehabilitation & Research who has also authored numerous professional papers concerned with upper extremity prosthetics.
Cutting Through Colors and 'Cosmesis Kids' Prosthetics Net Both Praise and Pleas
By Mary Bach Fleming
Pediatric specialist Todd Anderson has about equal portions of applause and appeals for manufacturers of children's prosthetic systems.
While several companies are responding with components tailored to young patients, he feels that some innovations are more decorative than functional, and that much more could be done in terms of practical design.
In short, the certified prosthetist enthusiastically welcomes pediatric break-throughs which have appeared in recent years. But, he believes there are substantial gaps in basic components, including products appropriate for what seems to be the "orphan" age group - five to 12-year-old limb deficient children.
"There are enough choices for little children, and once a child reaches 11 or 12, we can often use a small-sized component designed for adults. But it's that 'gap' period - from five to 10 or 11 - that has few available products - primarily knees - that are really suitable," he noted.
"For that age, we build a lot of exoskeletal lower extremity prostheses until the child grows enough to accommodate adult components.
And that's too bad! Even though, granted, this is a very small commercial
market, it's a critical time in learning to use a prosthesis.
"Many professionals feel that a child settles into a gait pattern around age six or seven. But, component-wise, we're not giving them the proper devices to develop the best gait pattern. And then around age 13, we put them into adult components," Todd continued.
"At that point, is the child supposed to learn how to walk properly all over again ?"
Todd Anderson's concerns are born of substantial experience. A right, below knee amputee since a motorcycle accident at age 21, he completed his prosthetics education in 1985 and was ABC-certified the following year. Since 1990, he has been prosthetic manager at the Minneapolis unit of Shriners Hospitals for Crippled Children.
"We do about 60% lower extremity and 40% upper - that amounts to some 325 prostheses a year. That's quite a few compared to pediatric cases seen by private practitioners," he noted.
In earlier years, Todd reported that standard industry pediatric prosthetic practice was to fit all lower extremity deficient children with a SACH foot, and incorporate a single axis knee with silesian belt suspension for a child with an above knee amputation. Both prostheses would be fabricated in laminated plastics or wood.
The SACH (solid ankle cushioned heel) foot consists of a rigid inner keel, usually of wood, that ends in the forefoot. This is combined with a soft heel that absorbs shock, and a semi-soft toe material. While both functional and stable, the design offers no propulsion. In the last 20 years, adult foot designers began substituting synthetic materials for wood to make a flexible keel that extends into the prosthetic toe section. When weight is applied, this keel flexes like a diving board, creating a spring sensation in the final stance phase that propels the walker forward. Such propulsion greatly assists jumping, walking, and running. Originally termed "energy-storing," this ankle-foot component is now called a dynamic response foot.
"One of the first big technological advances we came across was in the early '90s when M+IND decided to make a dynamic response foot for children, the Seattle Child's PlayT. The company was already a leader in that kind of component for adults.
"Up to that point, few manufacturers had done dynamic feet for kids - our most dynamic population. A Flex-Foot can be made in any size, but it can be quite expensive when you have to replace a foot like that every year because of children's rapid growth," he noted. "Because of the higher costs of dynamic feet and the need for frequent replacement, choosing this componentry was not very practical.
"Then we started fitting this new Seattle Child's PlayT foot. After using it for 18 months, we surveyed parents and patients. Questions compared the new foot to the old one, usually a SACH foot, on the basis of function, cosmesis, and the child's self-concept.
"The response indicated the Child's Play had an overwhelming acceptance by both kids and their parents.
"It's very important to accommmodate the parents as well as the children," Todd stressed. "If parents are upbeat and approving of the foot, the child will think it's great, too. Kids pick up real fast on attitudes, and the acceptance and approval by others is extremely important to them.
"Actually - " the prosthetist laughed, "Kids could run around wearing a table leg and do okay. The matter of image is more important to the parents. A pediatric prosthetist has to look at the activity level and ability of each child, but also must be concerned about the subjective responses of the parents. It's necessary to fit the psyche as well as the amputation," he added.
While the pediatric dynamic response foot has many admirers, he reminded, limb deficient children also do quite well wearing the traditional SACH design, and the hospital still recommends it regularly.
"No studies I've seen have ever shown that small children benefit from dynamic response feet," Todd said simply.
"It's doubtful that most little children weigh enough to get a significant reaction from a dynamic response foot. When you consider it, kids - pound for pound - are tougher on a foot component than any adult. But if the prosthetic foot is stiff enough to produce a true response, it's often too rigid for a young child, and if it's very soft, it may fracture easily.
"It's hard to document any kind of results from dynamic response pediatric feet. Although we have a lot of clinical and anecdotal research on that score, it's not scientific enough to be objective," he continued.
"But the fact that the dynamic response foot is cosmetic is a big plus psychologically because it means greater acceptance. And we should rely on the parents' observations since the parent is the daily therapy provider and notices if the child is walking better.
"So, even if we can't document a change by providing a dynamic response foot, if it makes parents happier and the child feels more self-confident -- that's fine with me!"
"What I would be concerned about is if the parent would blame the prosthetic foot - regardless of what kind it is - for the child's walking poorly or not at all. The child runs and walks - not the foot. There's a real danger when the prosthesis is blamed for gait shortcomings. Then parents need counseling to understand how prostheses function," he said emphatically.
One of the most important factors in pediatric prosthetics, Todd stressed, is to fit the child early. Hopefully, the prosthetist will adequately inform the parents about all options so that mutual agreement among care providers will result in the most appropriate prosthesis. By keeping the parents updated concerning both standard and new components, the prosthetist can always make modifications later, determined by how the child is progressing, he suggested.
A child with a short residual limb won't realize as much of a benefit from a dynamic response foot; it takes the longer residual limb to deliver sufficient force, the prosthetist pointed out. The more force put into a dynamic foot, the more response is received from it. And it makes no difference whether the wearer is a petite six-year-old or a skinny ten-year-old. A shorter lever arm just has less impact on a foot," he explained. Cosmesis is another vital area in fitting pediatric prostheses.
"Everybody talks cosmesis for an upper extremity prosthesis, and overlooks the importance of appearance for feet," Todd pointed out.
"I remember when I got my first prosthetic foot with toes - how I did a double-take because it seemed so weird to have toes again. But at least two-thirds of our patients are congenital amputees. Some of these kids have never had five toes on a foot before - and looks are very important to them.
"When you put a sock on one of these cosmetic feet and see little toe bumps - well! It's really neat to them," he laughed. "Parents tell us the child will take socks and shoes off at family functions just to show off the prosthetic foot."
That also poses a problem somewhat unique to pediatric prosthetics, the practitioner reported.
"Most prosthetic feet are durable as long as they stay in a sock and shoe. But there's not a foot made that can stand up to a child going 'barefoot.' What we really need is a foot that looks good and functions well - and one that can be worn barefoot!
"As prosthetists, we tell kids that we prefer they not go without shoes or swim while wearing the prosthetic foot since water will eventually break through the outer layer and transform it into a sponge. But in no circumstances do we forbid it! We must expect these kids to go without shoes. It's much more important for them to be kids. We don't suggest they abuse the foot - but kids will be kids.
"We'd rather make a special swim prosthesis for a child who spends lots of time in the water- and it sure would be great if they could go barefoot," he sighed.
"The best foot design would be a heel height from zero to 3/8 inch - to allow going barefoot or wearing a tennis shoe. In most cases, there's no call for any higher heel height," Todd added.
Asked to identify the biggest problem for pediatric prosthetists, he promptly answered- "Knees!"
Children with above knee amputations have a relatively short stature in proportion to their residual limbs. There's very little room between the knee center and the socket in which to put all the prosthetic hardware, he explained. More often than not, the knee must be attached directly to the end of the residual limb.
"Some single axis knees aren't practical unless the amputation is quite high. For years, the only type available to us was a polycentric knee by Daw," he noted. "Now some companies have come out with smaller polycentric knees, but they aren't really designed for kids - they don't fold up as well. On an adult," Todd explained, "If a knee sticks out an inch, that's not significant. But if it sticks out that far on a child, that's likely to be 1/6 of the leg length -- way too noticeable.
"At age three or four, a child can use a knee. And at five, that child can walk very well. But new pediatric knees seem to be designed for a 10-year-old. Consequently, we build a lot of exoskeletal prostheses until the child grows more and can use an adult component.
"There is a definite gap in prosthetic components from the age of five to 10 or 11 - not very much out there that's appropriate. Pediatric feet are made to fit into a 22mm pylon, and adult components fit into a 30 mm pylon. So, even if I can find a small knee which would work, it won't fit into a pediatric-sized pylon. Then we have to do all kinds of adaptations that don't necessarily follow manufacturer recommendations," he continued.
"Many companies don't realize that we need a variety of parts - a choice of modular components just like those offered to adults. Instead of providing these, some companies color the parts to make them more attractive and saleable. Parts really should be more functional - not just bright and colorful!" he emphasized. "Then these kids will be a lot more successful as adult prosthetic users!"
This doesn't mean that Todd discounts the impact of brightly-hued components. Far from it. He's frequently seen children formerly reluctant to wear a limb become delighted with a new version in vivid pinks, purples, and yellows. Displaying bold colors and favorite decals can make the child proud of the prosthesis and more self-confidant.
"They're not afraid to be 'different.' It's all about helping young people understand that the use of a prosthesis is good and okay," he added.
Since the introduction of whimsical designs and a crayon box full of colors, the Shriners team in Minneapolis now produces approximately 25 percent of its annual output of 325 devices in personalized combinations. Children often like to wear them without a cosmetic cover -making life easier for fabricators who must replace the costly covers, and less expensive for parents and/or third party insurers, he said.
Another aspect of technology for which children seem to have no need is hydraulic knees.
"You'd think kids - who are constantly changing cadence- would benefit the most from a hydraulic or pnuematic knee. But they do fine without them. Kids are rough - they blow out the seal on hydraulics. Kids also have great balance, so they don't necessarily require any kind of safety knee - just a good, durable polycentric knee that folds up well and is lighter and shorter. That's all!" Todd added.
Because of the number of limb deficient children who are treated at the Minneapolis Shriners facility as well as at other hospitals in the Shriners system, the pediatric expertise of staff prosthetists is widely recognized by other practitioners. Frequently, Todd noted, his team gets calls from prosthetists in private practice about new pediatric components and the hospital's experience in using them.
"Some companies bring us new products which we are happy to test," he commented. "Others I learn about by going to Academy meetings or special presentations. We are always willing to work with manufacturers. But I don't believe I should have to go hunting for new products. If there is a pediatric component new to the market, why isn't that information on my desk?
"While we try to work within a budget, our main mission is to give children the best prosthesis most appropriate to each situation. Thanks to the Shriners substantial endowment fund and the generosity of its members, we have the opportunity to fulfill this goal," he emphasized.
"We're very interested in all prosthetic innovations and look forward to seeing anything that will help limb deficient youngsters get a better start in life!"
About the Shriners Care Centers
The Twin Cities unit of the Shriners Hospitals for Crippled Children is one of 22 Shriners facilities in North America, including Canada and Mexico. Of these, 19 see orthopedic patients from birth to age 21, with new patients accepted up to age 18. The other three hospitals are burn treatment centers. Orthopedic care includes treatable conditions which can be remedied by surgery, therapy, prostheses, or orthoses.
Younsters are referred for care from a variety of sources such as physicians, parents, disability organizations, and O & P practitioners.
Todd Anderson's prosthetics team includes two other certified prosthetists and two registered technicians who deliver some 325 prostheses annually. The Minneapolis hospital's orthotics staff consists of four certified orthotists and three registered technicians who are responsible for between 2,000 and 2,500 braces yearly.
Thanks to a substantial endowment, all services at Shriners facilities are provided without charge to patients who need financial assistance. The cost for such medical aid is now estimated to be in excess of $1 million dollars per day for all of the North American hospitals.
A Practitioner Comments-New Products Better Meet Kids' Needs
Minneapolis certified prosthetist Todd Anderson and his team at Shriners Hospitals for Crippled Children fit over 300 prostheses annually - the majority of which are lower extremity devices. Here are his comments on lower limb pediatric components and fabrication improvements that have been tested at the regional orthopedic facility.
FEET
"We started fitting the new Seattle Child's PlayT foot in the early 90s and, when I did some surveys 18 months later, I found it had an overwhelming acceptance by both kids and their parents.
"The Child's Play design," he explained, "is probably the first foot geared to provide dynamic response from age two onward."
A recent component the prosthetics team has adopted enthusiastically is an Otto Bock foot with an elasticized, rather than a dynamic response keel.
"It's similar to a small-sized SAFE foot," Todd said. "Some small SACH feet are also more elastic than solid. This Otto Bock design is good for a child with a short below knee amputation or an above knee. The foot has an elastic keel with a smooth roll-over which also creates a nice, comfortable gait. It's better for young children and comes in small sizes. It is extremely durable and its price is more in line with a SACH foot than the more expensive dynamic response designs.
"This was specifically created for pediatric amputees," he stressed.
"It's not just a small version of an adult foot. And it's very cosmetic, too, which is important to both parent and child."
"Quite often, we'll start out a younger child or a new amputee with the Otto Bock and then work up to the Child's Play. The SAFE foot is out there, too, but we don't use it a lot in this part of the country. There's no particular reason for that other than we get comfortable with what we're used to.
KNEES
"For a long time, we used a polycentric knee by Daw because it was the only suitable one," he noted. "It rotates on a 4-bar system and folds up underneath the leg a little nicer. It's a good knee, but kids would break it. Within six months, it would need refurbishing.
"Daw has come out with a Petite Knee, but it's really not petite - it sticks out too far. M+IND has a new pediatric knee, but it's not available at this time. Lighter weight and shorter is what we really need.
"Century XXII makes a total knee called the Small WonderT. It's been a great find for us. It has a stance stability system that makes a child feel quite secure. With that knee, the child walks very well, too. It folds up nicely, has good colors, and includes a safety device. It's probably the knee of choice for us right now," he added.
SOCKETS
"We're using many more thermoplastics for flexibility and comfort.
With a laminated frame, as the child grows, we just make a new socket and fit it into the existing frame. An endoskeletal prosthesis may be easier for making dynamic alignment changes and adjusting for growth, but how practical is it really? That all depends, since it costs more when the cosmetic cover repeatedly gets torn apart and has to be replaced.
"From that standpoint, then, an endoskeletal isn't practical. But colored components solve that problem. With the bright colors, kids don't want to cover the leg up. Not having to 'finish' the prosthesis is best from the technician's point of view," Todd noted.
SUSPENSION
"We can use silicone suspension sleeves; the ICEROSS system has helped us quite a bit. Occasionally, we may pin one, but more often we use a lanyard system - a Velcro tab at the bottom of the socket to secure it in the prosthesis," the prosthetist explained.
"Also, Jim Smith Manufacturing has an AK suspension belt which has really been great with kids. It's hard to keep a belt on children since they have no defined waistline to hold a silesian belt. This suspension is more like a pair of spandex shorts with only one leg. It works very well distributing the pressure more evenly.
"If a child grows or gains a few pounds, these shorts adapt. Then when the child is older - maybe ten or twelve- we can go to conventional suction."
TECHNOLOGY
"I'm looking forward to the day we get CAD/CAM. That kind of advanced fitting precision would really be appreciated here," he said sincerely.
"Until then, we'll continue doing the best job we can!"
Resources Help Kids and Parents Cope
Never doubt the bonding qualities of a material like paper. Despite its relative perishability, paper can be a stronger adhesive than the world's toughest glue. A case in point is the newsletter "SUPERKIDS." This supportive publication is directed at the families and friends of children with limb differences. Both youngsters and their parents write about their experiences and reach out to others. This attractive newsletter, which includes photos and drawings along with heart-warming stories, puts readers in contact with others who have limb differences. In addition, editors Peter and Peggy McLoughlin also publish a Superkids Directory of Families. In it, over 540 children are indexed by limb condition, age, and where they live, making it possible for families to establish personal contact with each other. Price of the directory is $10 for participating families and $15 for others.
To subscribe to Superkids or obtain a directory, write the McLoughlins at Superkids, 60 Clyde St., Newton, MA 02160.
A networking system connecting parents of children with similar disabilities now numbers a database of over 6500 families whose offspring have some 1500 types of disorders. MUMS welcomes parents or care providers of any child with a disability, disorder, chromosomal abnormality, or health condition.
Upon introduction through the networking system, parents can exchange valuable medical information, plus resources such as doctors, clinics, and medical research programs. The organization also helps parents establish support groups for specific conditions. For further information, contact MUMS National Parent-to-Parent Network, c/o Julie Gordon, 150 Custer Ct., Green Bay (Go, Packers!), WI 54301-1243.
An organization devoted to children with cancer, Special Love hosts week-long summer camps in Front Royal, Virg., for kids age 7 to 17. The nonprofit group also arranges 18 annual programs, including the Under Seven Family Weekend, infants to 6-year-olds; the Fantastic Friends Weekend, for 13- to 17-year-olds; and Young Adults with Cancer Weekend, for those 18 to 25. The camp-style weekends feature sports, crafts, and midnight campfires. In winter, participants can attend a ski trip. Events are announced in the "LoveLetter," a quarterly publication. For further information, contact Special Love, Inc., 117 Youth Development Ct., Winchester, VA 22602; or call 540-667-3774.
A series of publications dealing with children with limb deficiencies is produced by the Area Child Amputee Center, Grand Rapids, Mich., and available through the ACA's print and video collection. "Children With Limb Loss: A Handbook for Families" is in two editions, one for birth to age five, and the other covering kids from six to 12; another is aimed at adolescents. There is also a handbook for teachers who have limb deficient students in class. Among the topics covered are terminology, developmental milestones and corresponding prosthetic use, a review of prosthetic construction and components, and related resources. Each is $2; the teacher's copy which focuses on prosthetic care and training issues and facilitating a normal school experience is $1.75.
Also of interest is "Upper Extremity Options for Kids," a video that may be borrowed through ACA. For sale through ACA are two volumes by Linda Ratto on adjusting to pediatric amputation. "Coping With Being Physically Challenged" is aimed at the child, while siblings are addressed in "Coping With A Physically Challenged Brother or Sister." Consult our ACA resources page for detailed information on all of the above. If the order form is missing from this issue, call the ACA at 865-524-8772.
Vermont Adaptive Ski and Sports will host its ninth two-week residential camp for boy and girls the first half of July, 1997. Camp Echo is open to limb deficient children age nine to 16. Activities include swimming, sailing, kayaking, snorkeling, fishing, and water-skiing with adaptive equipment available. Older adolescents may be accepted as counselors in training. The organization also hosts a daily adaptive ski instruction program from December to March at the Ascutney Mountain Resort in Brownsville, Vermont. For program information and fees, contact Don Allen, director, at P.O. Box 36, East Lempster, NH 03605, or call 603-446-7819.
Parents interested in becoming advocates on behalf of their children can get assistance from a number of publications. "How to Get Services by Being Assertive," is by Charlotte Des Jardins, executive director of Chicago's Family Resource Center on Disabilities. She has also written "How to Organize an Effective Parent/Advocacy Group and Move Bureaucracies," a guide to securing services, passing legislation, raising awareness, and developing new programs on behalf of youngsters who have disabilities. For information on how to obtain either, contact the Family Resource Center on Disabilities, 20 E. Jackson Blvd., Rm. 900, Chicago, IL 60604; or call 312-939-3513.
Another helpful resource for parents, educators, care-givers, and advocates is the National Information Center for Children and Youth with Disabilities. For information on improving the lives of children with disabilities, contact NICCYD at P.O. Box 1492, Washington, D.C. 20013-1492; or phone 800-695-0285.
A free newsletter aimed at guiding students with disabilities into the working world is known as Point of Departure. Its audience includes advocates, parent centers, educators, and service providers who work with young disabled adults and their families. Articles outline strategies used by successful parent/professional partnerships, model training projects that prepare youths for employment, and making a transition to independent living following high school. Newsletters are published twice annually by the TATRA Project, a national technical assistance program funded by the Rehabilitation Services Administration. To subscribe, contact TATRA at the PACER Center, 4826 Chicago Ave. S, Minneapolis, MN 55417, or call 612-827-2966.
While there are a number of rehabilitation centers which see children with limb deficiencies, two that specialize in such treatment are the Area Child Amputee Center, a part of Mary Free Bed Hospital and Rehabilitation Center in Grand Rapids, MI, and Texas Scottish Rite Hospital for Children in Dallas.
Information on all aspects of pediatric amputation may be obtained by contacting the Area Child Amputee Center at 235 Wealthy St., S.E., Grand Rapids, MI 49503; phone is 616-454-7988; or Texas Scottish Rite Hospital at 2222 Welborn St., Dallas, TX 75219-3993; phone, 214-521-3168; fax, 214-559-7642.
To learn what clinics and centers provide care for children with limb differences in your area, call the Association of Children's Prosthetic-Orthotic Clinics (ACPOC), at 847-698-1636.
Health care professionals who work with children with disabilities or severe chronic illnesses often deal with the child's psychosocial needs. When professionals need assistance assisting a disabled child emotionally, they can call the National Center for Youth With Disabilities at 612-626-2825; or write them at University of Minnesota, 420 Delaware St. SE, P.O. Box 721, Minneapolis, MN 55455; fax, 612-626-2134.
While NCYWD focuses on the psychosocial wellness of adolescents, Association for the Care of Children's Health (ACCH) provides professionals and parents with information on the psychosocial needs of children of all ages. Contact ACCH at 7910 Woodmont Ave., Ste. 727, Rosemont, IL 60018-4226; or phone 847-698-1636; fax, 847-823-0536.
A free, weekend camp for young people (ages 6 to 20) with limb deficiency is sponsored by The Children and Adolescent Limb Loss Clinic, Kluge Children's Rehabilitation Center, and the University of Virginia-Charlottesville. Scheduled for Aug. 1 - 3, 1997, Adventure Camp activities range from canoeing to volleyball at Highroad Program Center, Pine Lodge, Middleburg, Virg. More information and/or registration forms can be obtained by contacting Bev Gryth, Adventure Camp, 4234 Blenheim Rd., Charlottesville, VA 22902; or phone Bev at 804-293-9720.
Families of children with limb deficiencies in the Buffalo, New York, and Chicago, Ill., area have local resources to tap into. In Buffalo, the Association of Family and Friends of Limb Disorder Children publishes a quarterly newsletter "Cherub Forum," in addition to holding monthly meetings for local members and staging an annual camp and picnic. For more information, contact AFFLDC at 936 Delaware Ave., Buffalo, NY 14209. For those in the Chicago area, "FAIM Connection," a quarterly newsletter, is published by Families and Amputees in Motion. FAIM also plans an annual picnic. Contact FAIM at 1639 N. Paulina St., Chicago, IL 60622-1408, for more information.
Grandparents of disabled children now have their own booklet to turn to. Written by Mary J. Pinkava, "A Handful of Hope: Helpful Suggestions for Grandparents of Children with Disabilities" is available from Pilot Parent Partnerships. To obtain a copy, contact Pilot Parent Partnerships at 2150 E. Highland Ave., Ste. 105, Phoenix, AX 85016; or phone 602-468-3001.
The Federation for Children with Special Needs provides information for parents on respite care, camps, support groups, special education, legislation, and advocacy. FCSN also publishes a quarterly newsletter, "NewsLine." For more information, contact FCSN at 95 Berkeley St., Ste. 104, Boston, MA 02116; or phone 617-482-2915. On the internet, search http://www.fcsn.org.
Adaptive skiing, a popular sport for limb deficient people of all ages, is the focus of the 52 Association. Based in New York City, 52 Association emphasizes confidence through sports. Specially-trained, certified instructors - many of them war veterans - are themselves amputees. Children are incorporated into adult courses and are afforded extra attention. Call 212-868-1217 to learn when and where the next lesson is scheduled; or fax 212-868-1219.
