Myotonic Muscular Dystrophy in Children

July 21, 2021
Janelle Thomas MSN, RN
feature image

Muscular dystrophy is a condition that causes muscle weakness and atrophy — the breakdown of muscles. Watching a loved one gradually lose their muscle strength is heartbreaking, especially when the condition is happening to a child. It can make you feel helpless and wonder why it’s happening. But, there are things you can do to help your child live the best life possible.

What is myotonic muscular dystrophy?

There are nine different major types of muscular dystrophy. Myotonic is the most common type in adults, but it can still impact children. It affects both men and women and is named after one of its most common symptoms, myotonia — prolonged spasms or stiffening of muscles after use. While the effects of myotonic muscular dystrophy can take years to restrict daily living, life expectancy decreases as a result.

Myotonic Muscular Dystrophy Causes

Muscular dystrophy is caused by defects in certain genes. The different types of muscular dystrophy are determined by which genes have been affected. There are two types of myotonic muscular dystrophy — Type 1 and Type 2. Type 1 has a mild and congenital variant and is the one that occurs most commonly in children. While gene abnormalities in parents can increase the risk of a child having muscular dystrophy, the condition isn’t inherited but is instead caused by a new gene abnormality.

Myotonic Muscular Dystrophy Symptoms

Symptoms of myotonic muscular dystrophy vary based on age, type, and severity. But, the most common symptom is myotonia — such as having difficulty releasing one’s grip. Other common symptoms of myotonic muscular dystrophy in children include:

  • Weakness of muscles in the hands and feet
  • Difficulty swallowing
  • Abnormal heart rhythms
  • Learning difficulties
  • Daytime sleepiness
  • Early cataracts
  • Infertility (in adults)

Myotonic Muscular Dystrophy Diagnosis

To determine if your child has myotonic muscular dystrophy, you’ll need to take your child to their pediatrician. From there, their doctor will perform a physical exam and talk through any symptoms they’re experiencing and their family history. If your doctor suspects muscular dystrophy, they’ll conduct a series of tests to confirm the diagnosis and determine which type your child is experiencing. These tests may include:

  • Muscle biopsy
  • Genetic (DNA) testing
  • Neurological tests
  • Enzyme tests
  • Heart monitoring
  • MRI or ultrasound

Myotonic Muscular Dystrophy Treatment Options

Once diagnosed, the pediatrician will create a treatment plan designed to improve your child’s quality of life. There is no cure for muscular dystrophy, but treatments can help manage symptoms and slow their decline. Treatment options may vary but typically include:

  • Medications
    • Steroids
    • Medicines targeting gene mutations
    • Anticonvulsants
    • Immunosuppressants
    • Antibiotics
  • Physical therapy
  • Respiratory care
  • Mobility and positioning aids
  • Speech therapy
  • Surgery

Caring for a Child with Myotonic Muscular Dystrophy

While there is no cure for their condition, you can significantly improve your child’s quality of life through daily activities. Regularly attending doctors and specialty appointments can help keep their treatment plan on track. You can also implement many of the exercises learned at physical therapy at home to help support mobility. Other ways to care for your child may include:

  • Install home assistive devices — including ramps, bars next to the toilet and shower, wider doorways, and more
  • Invest in mobility devices — including leg braces, back support, or a walker
  • Massage your child’s joints
  • Ensure they take their daily medications
  • Clean their feeding tube
  • Introducing them to your support team — including teachers, friends, and family they can rely on for support

Contact Care Options for Kids For Pediatric Home Health Care

It can be hard to balance your time between work, home, and caring for a child who has a genetic disorder. Homecare providers offer the support you or your loved one needs.

That’s why our team of skilled professionals at Care Options for Kids are here to help. Our home care services offer support in the comfort of your home. We refer loving and competent caregivers to provide customized care for families – from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you are considering pediatric home health care services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.