By Charlotte E. Thompson, MD, author of Grandparenting a Child with Special Needs
Grandparents who have full or part-time care of a grandchild with spina bifida, cerebral palsy, or a neuromuscular disorder often have questions about what orthopedic care is needed and if appropriate orthopedic care is being received. Unfortunately, many orthopedic training programs place little emphasis on neuromuscular disorders, spina bifida, or cerebral palsy. Nevertheless, a knowledgeable pediatric orthopedist and a physical therapist are two of the most important members of a team caring for kids with these disabilities.
There are several ways that children with cerebral palsy can be helped. One is by injections of botox into spastic muscles, but this must be done by an orthopedist with wide experience in the technique. If a child has a spastic diplegia, where just the legs are involved, he or she may improve greatly with a surgery called a rhizotomy. This may be performed by a neurosurgeon and not an orthopedist. After the surgery, a pediatric physical therapist plays a most important role.
Back surgery for curvature of the spine or scoliosis may or may not help a cerebral palsy patient. The problem is that if the spasticity is severe the scoliosis may reoccur. Thus the pros and cons of surgery in these cases should be weighted carefully and often a second opinion is needed.
Arthrogryposis is a condition where one or more joints may be fixed. Surgery or serial casting can often be helpful, but this should only be done by a pediatric orthopedist with extensive experience in this disorder. Otherwise the treatment may be very painful and ineffective.
Neuromuscular disorders often present real challenges to orthopedists. Curvature of the spine in spinal muscular atrophy, muscular dystrophy, and some of the other conditions with muscle weakness can change a child’s life for better or worse. One of the principal problems is that many orthopedists do not understand that these patients must be mobilized as quickly as possible. They must never lie in bed for several days after surgery, but should be sitting up and receiving physical therapy as soon as possible. One of the most tragic cases I have seen was an orthopedist who technically was very good, but he kept a child in bed for several months and this changed her life forever. She became weaker and weaker and developed severe emotional problems. Some orthopedists insist on back braces for several months after the back surgery, but often this is not necessary.
Another problem with spinal muscular atrophy and some of the other neuromuscular problems is that because of weakness around the hip joint, the hip often comes out of the socket or is dislocated. Even when a child is not walking, orthopedists usually want to surgically put a hip back in place. I have seen cases where the hip dislocated one or more times after being surgically replaced. No surgery should be done unless there is severe pain and that usually does not occur.
Boys with Duchenne muscular dystrophy (DMD) begin to start walking on their toes as their muscle weakness advances and their heel cords become tight. Surgery of the heel cord, called percutaneous surgery, is a specific way the heel cord tendon is cut. This procedure allows the boys to walk much longer. A short-leg brace or Ankle-Foot Orthosis (AFO) (caliper) may be needed after the surgery. With this type of surgery, physical therapy is mandatory the day following the operation. The boys must get out of bed and start walking quickly because if they are allowed to say in bed or use a wheel chair, they may never walk again. One orthopedist operated on a boy without my knowledge on a Friday afternoon. Fortunately, the mother and grandmother knew I had insisted that physical therapy should be started immediately. The child’s school physical therapist was a friend and made house calls over the weekend, so the boy would not stay in bed. He was able walk for several more years because of this. Thus, parents and grandparents must be very aggressive in order to be sure that appropriate orthopedic surgery is being done and physical therapy received, as needed.
Charcot-Marie-Tooth is quite a common disorder which affects the muscle of the feet, ankles and legs, and one of the worst problems for both kids and adults is to find shoes that fit. Patients may have quite high arches and other foot deformities, so specially made shoes may be necessary. In addition, braces or AFOs (calipers) may make a great difference, so a pediatric orthopedist should be seen periodically. Surgery on the ankles and muscles in the legs may be necessary to make a child’s walking much easier. Curvature of the spine or scoliosis can occur and should be checked for periodically. With good orthopedic care, kids should be able to ambulate for a long time, unless there is a rapid progression of muscle weakness.
Children with spina bifida often need back and other orthopedic surgeries. Ideally, these are done by an orthopedist who is connected with a spina bifida clinic and has treated many children. Braces or AFOs (calipers) are extremely important and back braces may be necessary. A good orthotist or brace maker plays a very important role in the lives of these children, as with many children who have both neuromuscular disorders and cerebral palsy. A poorly fitting brace can be painful and ineffective.
One of the important roles grandparents can play is to do a lot of research in order to find the best orthopedic care for a grandchild, if this is needed. Checking an orthopedist’s credentials is essential and in general I would never let an orthopedist who sees mostly adult patients have any involvement with these special kids. In the U.S., I refer to one pediatric orthopedist whose book is the only one published on neuromuscular disorders and I always call him when I have questions. Another orthopedist has a son with cerebral palsy and is an expert on botox treatment. I know some of the special clinics in England have orthopedists as part of their team, so the children in these clinics are very fortunate. E-mail me at cetmd@earthlink.net for more information.
Copyright © Jessica Kingsley Publishers 2012.