Charcot-Marie-Tooth Treatment

If your teenager seems clumsier, you’re not alone. And it’s usually nothing to worry about. As kids have growth spurts, it can take time to find their center of gravity again. But if your child also complains of prickling or burning feelings in their hands and feet, they may have problems with the nerves communicating correctly (called peripheral neuropathy).

There are many causes for peripheral neuropathy. One cause is Charcot-Marie-Tooth disease (CMT). This genetic disorder typically shows up when kids become teens or young adults. While there is no cure for CMT, there are treatments that can improve your child’s life.

Charcot-Marie-Tooth Diagnosis & Treatment at UVA Health Children’s

At UVA Health Children’s, we’re deeply experienced in treating kids with conditions like CMT. Because of the number of specialists we have, we’re able to help your child and family in many ways.

Tools we use to help us find and diagnose CMT include:

  • Nerve conduction studies
  • Electromyography
  • Genetic testing
  • Nerve biopsy

There is currently no cure for CMT. But, there are ways we can make this condition more manageable. Many of these treatments also help to slow the progress of the disease. That means a longer time before it becomes disabling.

Genetic Testing For CMT

Genetic testing can be very helpful for treatment options. If we suspect your child has CMT, knowing what version they have can help us find the right treatment for them.

There are over 16 different subtypes of CMT Type 2. Based on the individual gene affected, the symptoms can be very different.

When we get the results of your child’s genetic test, we can use that information in developing their treatment plan.

Braces & Other Assistive Devices

For joint weakness, particularly in the ankles, we can help fit your child with braces and other devices. Some devices can help preserve muscle tone and function.

Supportive Therapies

We include physical and occupational therapists as part of your child’s care team. They work with us from the start to help create a treatment program that can maintain your child’s:

  • Mobility
  • Flexibility
  • Muscle strength

Types of Charcot-Marie-Tooth

There are 7 types of CMT. Type 1 and type 2 are the most common.

CMT Type 1 causes damage to the tissue that surrounds your nerves, called myelin. Myelin damage slows the signals that these nerves send to your child’s brain. It can also cause nerve sensations, like pins and needles.

CMT type 1 is sometimes referred to as a demyelinating disease. The most common demyelinating disease is multiple sclerosis. But, while MS affects the brain and spine (central nervous system), CMT only affects the nerves that run to the hands and feet (peripheral nerves).

CMT Type 2 affects a specific part of your child’s nerve cells called the axon. The axon sometimes called nerve fiber, helps the nerve pass electric signals to other cells. Because of this, CMT type 2 is sometimes called axonal CMT.

People with this form of CMT have muscle wasting (called atrophy). That means that they’re losing muscle strength.

Charcot-Marie-Tooth FAQs

Your child’s provider can best answer questions about your child’s condition, treatment, and prognosis. But these are some of the most frequently asked questions we hear from parents.

Is Charcot-Marie-Tooth fatal?

Not usually. Most people with CMT live a normal life span.

If CMT is genetic, why does no one else in our family have it?

Charcot-Marie-Tooth is a genetic illness. But that doesn’t always mean either parent has it or that it was passed down in the family. In many cases, it’s a spontaneous gene change (a mutation).

If my child has CMT, will their children have it as well?

In some types of CMT, only one copy of the gene is needed for symptoms to show up (called autosomal dominant). If your child has one of these types, then there is a 50% chance that their children will also have CMT.

Your provider can talk to both of you about this more.

When does CMT generally become disabling?

The timeline for CMT varies greatly. Your child’s provider can tell you more after identifying their CMT type. For many, treatment extends the length of time before symptoms become severe.

Generally, after age 50 it’s normal for symptoms to worsen quickly.