At St. Louis Children’s Hospital, we want you to be well-informed about your child’s cerebral palsy care. That’s why we take the time at each appointment to talk about the physical, emotional and social well-being of your child.
To help put your mind at ease, we’ve included some common questions and answers here.
About the Cerebral Palsy Center
Q: How long has the Cerebral Palsy (CP) Center been treating children with cerebral palsy?
A: The CP Center has been treating children since 1998.
Q: Why should I choose St. Louis Children’s Hospital for my child’s CP care?
A: Using a team approach makes a big difference in cerebral palsy care. Our specialists combine their expertise to create a customized care plan for each child. This care plan goes beyond medical care to ensure a child — and their family — have resources they need for emotional and social well-being.
Community Support and Resources
Q: How can I find other parents in my community who have children with CP?
A: Ask about a cerebral palsy support group at your pediatrician’s office or your child’s school. Our social worker at the Cerebral Palsy Center can also help with this. If a support group has not been started, try networking with some of the families at your child’s physical therapy office or adaptive sports groups.
Q: Who can help me find community resources and support?
A: Our on-staff social worker helps families with questions and concerns at every visit. This includes finding community support and resources as well as financial, emotional and social concerns.
Choosing a Doctor or Therapist
Q: How do I find the right pediatrician for my child? What questions do I need to ask?
A: We believe a multidisciplinary approach is best for children with cerebral palsy. Ask the pediatrician if they are willing to consult with our cerebral palsy experts. Has he or she had any previous patients with cerebral palsy, and if so, how many?
Q: How do I find a physical therapist in my community who is willing to treat my child?
A: Find a pediatric physical therapist. The best way to do this is to call the Cerebral Palsy Center at St. Louis Children’s Hospital or your pediatrician’s office.
You may wish to pursue therapy through your child’s school, especially if they need it for learning. Ask about the therapist’s attitude towards accomplishments and what kind of innovative ideas they have challenge your child.
Sports and Physical Activity
Q: How do I know if my child can participate in a sports-based therapy program? At what age can my child begin this type of program?
A: Any level of disability should not limit a child’s participation in sports. Many adaptations can be made to accommodate individual needs. Swimming is a great example of an activity that can be done at all ages and with children of varying ability. The age at which a child can participate depends on the specific sport.
Q: What sports programs do you offer at the Cerebral Palsy Center?
A: Through the Carol and Paul Hatfield Cerebral Palsy Sports and Rehabilitation Center, we offer all types of sports opportunities.
Each summer we offer an adaptive sports day camp called Camp Independence. We offer additional opportunities in the winter. We also offer open gym for soccer or basketball, swimming and dance at different times throughout the year.
Q: What activities would you suggest if my child doesn’t like sports?
A: Regardless of your child’s desire to play sports, activities that build muscle strength and use trunk muscles are important.
Walking and swimming are two good examples of such activities. Do as much activity in an upright position as possible. Get out on your bicycle or tricycle and ride, but make sure you wear your helmet!
Q: Should my child continue to attend traditional therapy sessions while also participating in a sports-based therapy program?
A: Yes, definitely! Your child should not decrease their amount of traditional therapy when beginning sports-based therapy.
Once your child is actively involved in a sports program, they may decide to decrease traditional therapies if your physician and therapist recommend it.
Orthotics, Braces and Equipment
Q: How do I know if my child needs orthotics? Where do I get these?
A: Children with cerebral palsy can have foot deformities, some of which can cause pain. If your child has a foot deformity, especially if he or she is in pain, orthotics may help.
See your pediatric physical therapist for evaluation of orthotic needs. If you are not currently seeing a physical therapist, you will need to get a prescription from your physician. A physical therapist or an orthotist will make the orthotic. It is extremely important that you see a reputable orthotist or bracing specialist with knowledge of foot biomechanics.
Your physical therapist should be able to point you in the right direction.
Q: Where do I get a lift for my child's shoes?
A: Differences in leg length are common. Even seemingly small ones can significantly affect a child’s gait (walking pattern). An orthopedic physician or pediatric orthotist can provide your child with a lift to help any leg discrepancy.
However, it is important that your child be evaluated for hip problems that can cause leg-length discrepancies before a lift is put on the shoe.
Q: What kind of walkers, gait trainers, canes and standers are the best?
A: The best device will depend on the specific needs of your child. Contact a pediatric physical therapist or physician for an equipment assessment.
School and Daily Life
Q: Will my child be able to drive?
A: The most important factors that determine this are cognition and vision. Many individuals with motor limitations can drive using an appropriately adapted vehicle and the right training. There are places that offer driving assessments and training when the time is right. Contact your occupational therapist to get started.
Q: How do I make sure my child is in the right school?
A: Your child should be in a school that challenges them to their utmost potential. That may mean they are in a regular classroom with an aide, or in a regular classroom but pulled out for parts of the day to attend therapy.
Your child should be given the resources they need to participate with their peers. Resources may include an aide, computer or communication device. Your child should also receive any necessary therapy services to promote improved performance in the school environment. This may include physical, occupational or speech therapy.
If these services aren’t provided, you may need to advocate for them. Your neurologist, pediatrician or social worker can help you with this.
Q: How do I make sure the environment is accessible at school?
A: You may ask your current school occupational therapist to visit the school with you and your child to ensure it is accessible and make any recommendations. These recommendations can even be included in your child’s IEP (individualized education plan).
Q: If I think my child needs a communication device, what should I do?
A: Ask your pediatrician about an augmentative communication evaluation. An occupational therapist and a speech therapist usually do this. They will evaluate your child’s communication abilities and make recommendations.
Make an Appointment at the Cerebral Palsy Center
If you’re a new patient, you’ll need a referral for care at our Cerebral Palsy Center. Please ask your physician to send us a referral before your first visit. During your visits, you and your child have the chance to ask questions. Your social worker and other members of your care team will be happy to answer them.