Myotonic Muscular Dystrophy in Children

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.

Causes of Muscular Dystrophy

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.

Symptoms of Myotonic Muscular Dystrophy

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 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)

Diagnosis & Treatment

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

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

How to Care for a Child With 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:

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

Contact Sonas for Home Health Care in Florida

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Sonas Home Health Care is here to help.

Our home health care services offer support in the comfort of your home. We refer loving and competent nurses 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 or a loved one are considering Pediatric Home Health Care services in Florida, contact the caring staff at Sonas Home Health Care. Call today at (888) 592-5855.

Jillian Miller BSN, RN

Director of Nursing at Sonas Home Health Care

This blog was reviewed by Jillian Miller BSN, RN — Director of Nursing for Sonas Home Health Care’s Tampa Bay market — for clinical accuracy. Jillian Miller has been a nurse for 16 years — working primarily in pediatrics. She believes the best part of working with the pediatric population is when you see smiles from clients when you first enter the room. She loves seeing the difference you can make in families’ lives while providing the best care possible for them.