Dr. Sharon DeMuth, Adjunct Associate Professor of Clinical Physical Therapy at the University of Southern California, Los Angeles, shared her expertise on physical therapy for children with Charcot-Marie-Tooth disease (CMT, an inherited nerve condition affecting the limbs). The following is drawn from a parent question-and-answer session.

What is the difference between Physical Therapy and Occupational Therapy?

Physical Therapy (PT) focuses on large-movement activities such as walking, running, building strength, climbing, and participating in school and playground activities. Occupational Therapy (OT) focuses on activities of daily living, including getting dressed, washing, and grooming. Because CMT can affect both the arms and legs, a child may benefit from both. For example, help with buttons or clothing requires OT; help navigating a slide requires PT.

In children, PT and OT can overlap, especially around age-related tasks. Before working on the feet, a therapist may need to help the child remove shoes and braces, which is itself a therapeutic skill. Coordination among all therapists working with the child is essential.

How can I tell whether my child needs OT, PT, or both?

When a child has a chronic condition like CMT, it is important to track any changes, but children do not need their lives consumed by appointments. Children grow and change quickly. Develop a strategy of checking in with the child’s doctor on a regular schedule. If symptoms appear stable, a working routine may be sufficient. Preventative steps, such as ensuring the child sits in a properly sized chair with feet flat on the floor at home and at school, matter greatly. Also watch for signs such as curled fingers while seated, which can signal loss of function over time.

Once you understand how CMT tends to progress, you will be better positioned to judge when therapy is needed. When in doubt, ask the doctor for a referral and compare findings against an existing baseline.

What should I look for in a treatment plan for a growing child with a progressive condition?

Focus on the most critical issues present now. Treatment plans should evolve over time. Be aware that children may have access to therapists in more than one setting, such as at school and privately, and coordination among those providers may be needed.

How do I encourage my child to participate in therapy?

Seek out professionals who work regularly with children and let them build a relationship with your child. Stepping back from the role of therapy enforcer can help, since children are often more receptive to other trusted adults. A good therapist will help the child take ownership of their care.

It also helps to connect therapy directly to activities the child loves, whether that is cycling, swimming, cooking, or dancing. Framing it this way, such as pointing out that maintaining strength makes it possible to keep doing the things they enjoy, can be a powerful motivator. Encourage your child to become their own advocate. The sooner children take ownership of their health, the stronger they tend to become.

How do I address emotional difficulty around therapy?

Try to understand what has changed. What is worrying the child? Was there a painful social moment, such as a comment someone made or being left out of an activity? Role-playing can be a valuable tool. Practice responses to common questions, such as why the child wears braces or uses a particular device. Ask the therapist to help shift the mood when a session feels heavy.

There are many suggested therapies. How do I evaluate them?

Research is a good starting point. The National Institutes of Health website provides information on clinical trials. For aquatic therapy, the American Physical Therapy Association offers consumer resources. Ask your therapist to explain different treatment options and recommend sources for further reading. If a therapist is unwilling to discuss alternatives, it is reasonable to seek a second opinion. There should always be open two-way communication between patient (or parent) and therapist.

A local CMT support group may also offer resources, as may publications such as Exceptional Parent magazine.

How do I know when it is okay to take a break from therapy?

Everyone needs breaks, including parents. If an opportunity arises, there is no reason to feel guilty about stepping away for a period. Research suggests that short, intensive bursts of therapy may in some cases be more effective than ongoing sessions several times a week.

Take the break and observe your child. If a period of rapid growth occurs, therapy may be needed again. If the child appears stable and is not regressing, it is reasonable to ease off and revisit if a problem surfaces or a growth spurt begins.