How long will the appointments at the Spina Bifida Clinic take?

The length of time will depend on how many doctors and medical/support specialists your child is scheduled to see. As much as possible, the appointments will be coordinated so that you can move quickly and without delay from one appointment to another.

How do I know if my child needs orthotics, and if so, where do I go?

Children with spina bifida can have foot deformities, and some of these can cause pain. If your child has a foot deformity—and especially if he or she is in pain—you may want to look into orthotics to prevent and/or lessen as much pain as possible. You can start by seeing your pediatric physical therapist for an evaluation of orthotic needs. If you are not currently seeing a physical therapist, you will need to obtain a prescription from your physician. An orthotist and physical therapist will be available at the Spina Bifida Clinic to help make decisions about the best orthotic needs for your child.

What kind of walkers, gait trainers, canes and standers are the best?

Each child has different needs, so the best device depends on the specific needs of your child. The best thing to do is to contact a pediatric physical therapist or physician for an equipment assessment. An equipment specialist will be available when you visit the Spina Bifida Clinic.

Why is skin care so important?

If you have Spina Bifida you are more likely to have skin problems. Skin care is important because the skin is the largest organ of the human body. For skin to protect the body, it must remain whole and intact. Learn more about skin care.

How can I find other parents in my community that promote a similar style of care and management for children with spina bifida?

Ask about a support group at your pediatrician’s office or child’s school. If a support group has not been started, try networking with some of the families from your child’s therapy or sports groups.

How do I find a physical therapist in my community who is willing to treat my child?

Find a pediatric physical therapist. The best way to do this is to call your local children’s hospital or pediatrician’s office. It also is good to pursue therapy through your child’s school, especially when it is relevant to his or her learning. Find out the therapist’s attitude toward accomplishments and what kind of innovative ideas he or she has to challenge your child.

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?

No matter what your child’s level of disability, it should not limit participation in whatever sport he or she has an interest. 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.

What activities would you suggest if my child doesn’t like sports?

Regardless of your child’s desire to play sports, activities that build muscle strength and use trunk muscles are important. Dancing and swimming are two good examples of such activities. Your child should do as much activity in an upright position as possible, such as riding a bicycle or tricycle—always with a helmet, of course.

Should my child continue to attend traditional therapy sessions while also participating in a sports-based program?

Yes! Your child’s traditional therapies should not be decreased when first beginning sports-based therapy. Once your child is actively involved in a sports program, he or she may decide to decrease traditional therapies, but only after consulting with your physician or physical therapist.

How do I make sure the environment is accessible at school?

You may ask your current treating therapist(s) to visit the school with you and your child to ensure it is accessible and make any recommendations. These recommendations then can be included in your child’s individualized education plan (IEP).

How do I make sure my child is in the right school?

Children with spina bifida should be in schools that challenge them to achieve their utmost cognitive potential. Whatever the situation, your child should be provided with the resources needed to participate at a level with his or her peers (e.g., aide, computer, communication device, etc.).

Your child also should receive any necessary therapy services to promote improved performance in the school environment, such as physical therapy, occupational therapy and speech. If these services aren’t provided, you may need to advocate for them.

Will my child be able to drive?

The most important factors determining this are cognition and vision. Contrary to popular belief, many individuals with motor limitations can drive with an appropriately adapted vehicle and the right training. There are places that offer driving assessments and training when the time is right. Contact an occupational therapist at one of your local facilities to get started.