What to Know About Muscular Dystrophy in Children As a Parent

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Muscular dystrophy (MD) is a group of rare genetic diseases that lead to weakened and abnormal muscle function over time. Although the age of diagnosis can vary from infancy to adulthood, the average age of diagnosis is 5 years old. Parents and caregivers usually begin to notice signs of the disease during the second year of life.

This article provides an overview of muscular dystrophy in children and guidance for parents.

Little boy in wheelchair beside little girl kneeling with dog

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Muscular Dystrophy in Children 

Muscular dystrophy stems from a lack of dystrophin, a protein needed to maintain muscle strength. There are over 30 types of muscular dystrophy ranging from mild to severe. Two of the most common types include Duchenne and Becker muscular dystrophy.

Muscular dystrophy is a genetic disease, meaning it often runs in families. Although the adult parents may be healthy and show no signs of the disease, they can pass a mutated gene down to their child, who can be affected by the disease.

With MD, a person’s muscle issues usually worsen over time. The time to decline or degeneration in muscle movement can vary.

Boys

Males are more likely to get both Duchenne and Becker muscular dystrophy.

With Duchenne muscular dystrophy, an inherited X-linked mutation links the disease to an abnormal X chromosome. Males are born with one copy of the X chromosome (from their mother) and one Y chromosome (from their father), so if the X chromosome is mutated with Duchenne, the child will be born with the muscular disease.

The reason why boys are most commonly affected is that they only have one X chromosome, so if the one X chromosome is mutated, they will not have an extra copy of it to compensate for the mutation.

Girls

There is a 50% chance that healthy females, also known as carriers, can pass down a mutated X chromosome, leading to a muscular dystrophy diagnosis in their son.

Likewise, daughters have a 50% chance of inheriting the mutated gene. Still, they ultimately will not be impacted because they have a chance of inheriting their father's healthy X chromosome to help balance the effects of the abnormal one inherited from their mother.

Parents may experience guilt after discovering that they possibly and unknowingly passed on a mutated gene that will lead to their child being diagnosed with MD.

Muscular Dystrophy Symptoms

Some of the most common signs and symptoms seen in children diagnosed with MD include:

  • Large calf muscles
  • Difficulty walking or running 
  • Difficulty rising from sitting to standing, or moving their hands slowly up their legs to stabilize themselves while getting up (Gower’s sign)
  • Difficulty swallowing
  • Heart problems (e.g., abnormal heart rhythm or heart failure
  • Learning disabilities
  • Painful muscles
  • Scoliosis (abnormal curving of the spine)
  • Difficulty breathing

Diagnosis and Treatment at a Glance

If you suspect that your child is showing signs of muscle problems, contact your pediatric healthcare provider for an appointment.

To arrive at a diagnosis, your pediatrician will need to obtain a detailed history from you by asking a series of questions and performing a thorough physical exam of your child. 

Some tests and procedures that can be performed to help confirm the diagnosis include:

  • Enzyme blood tests: These could include a test that measures the amount of creatine kinase in the blood. Higher levels could be a sign of muscular dystrophy.
  • Genetic testing: Includes running blood tests to check for genes linked to muscular dystrophy
  • Muscle biopsy: Taking a small muscle sample for examination under a microscope
  • Electromyography: A needle is inserted into the muscles to measure their response to electrical signals
  • Echocardiogram: Allows a healthcare provider to get ultrasound images of the heart

Although there is no cure for muscular dystrophy, there are some medication and treatment options, like physical and respiratory therapy, that can help those diagnosed have a better quality of life.

Medications like corticosteroids can help with improving muscle strength and slow down the progression of the disease. The Food and Drug Administration (FDA) has also approved injections that can help stimulate dystrophin production in children with Duchenne.

Parenting a Child With MD

The fear and pain that comes with discovering your child has an incurable disease can be extremely difficult to bear. However, there are resources that can help ease the stress.

One of the first steps in your journey will be to learn all you can about your child’s condition because, as the parent, you will be your child’s advocate and become the expert in their care.

With a Partner

Parenting a child with MD with the help of a second caregiver or partner can be extremely beneficial for the child. It also benefits the caregivers, who can navigate the diagnosis together.

Another benefit of having a partner is that it may be possible for one parent to be the primary source of financial support. This could allow the other parent to work fewer hours or stay at home, allowing the flexibility to travel back and forth to medical appointments, therapy, or even homeschooling if appropriate for the child.

As a Single Parent 

Being a single parent can be a challenge for many, especially if you have a child with special healthcare needs. It can even lead to an increased likelihood of having a depressive episode.

Depending on family support and availability of resources, it may be helpful to hire in-home help. Your insurance benefits may also cover a home health aide or respite care for your child while you work or take time to practice self-care.

Adolescents

Adolescence can be a challenging time to navigate for any child and their family, especially once puberty occurs. During this period, children feel a desire for independence. It's also a time when they can become very self-conscious.

Having a diagnosis like MD can make children feel isolated. Isolation may be amplified if children are less mobile than their peers and rely on a wheelchair for transport.

It's important to involve children in support groups and therapy to allow them the ability to express themselves and develop a sense of belonging. 

Finding a Support System 

A support system is something that all families can benefit from, especially when parenting a child with special healthcare needs. You may be able to find local support groups to help you navigate the unexpected turns that can occur after diagnosis.

There are also national organizations that your family can connect with including:

Working With Specialists

In addition to your pediatrician, your child will need to see a variety of healthcare providers who are experts in caring for children with muscular disorders. These specialists can include:

  • Orthopedist (doctor specializing in the skeletal and muscular system)
  • Pulmonologist (doctor specializing in the lungs)
  • Cardiologist (doctor specializing in the heart)
  • Neurologist (doctor specializing in the nervous system)
  • Physical therapist
  • Occupational therapist
  • Case manager or social worker

Medical Expenses to Prepare For  

The medical costs associated with caring for a child with muscular dystrophy can be high and result in many unexpected expenses. Reduced mobility and the need for therapies and durable medical equipment that may not be covered by insurance can also present major financial challenges for families.

There may be special programs available at your local children’s hospital or through non-profit organizations like the Muscular Dystrophy Association that can offer resources to help alleviate some of the financial burden.

Mobility 

Special modifications and equipment to help those with MD have a better quality of life are available. However, they are usually not inexpensive.

Some of the pieces of medical equipment that may be helpful include

  • Custom-made braces
  • Canes
  • Wheelchairs
  • Shower chairs
  • Hospital beds
  • Walkers

Other options include accessible homes and vehicles.

Unfortunately, not all of these things are typically covered through medical insurance. Families may need to participate in fundraisers, reach out to non-profit organizations, or pay out of pocket. 

A detailed letter from your child’s healthcare provider and other advocacy work can help get equipment approved. Even if you need to appeal insurance denials and resubmit insurance claims, being persistent in asking your insurance company to cover equipment can help save your family thousands of dollars.

Therapy

Depending on the prescribed amount, occupational and physical therapy can also be costly. In addition, many insurance companies place a cap on the number of therapy sessions that children qualify for, resulting in out-of-pocket expenses for parents.

Therapy services can amount to hundreds of dollars per week without insurance coverage. However, one option can be to talk with a tax professional about opening a flexible spending account, which can ultimately reduce out-of-pocket expenses since employees can have pre-tax money taken out of their paycheck and transferred directly into it.

Summary

Muscular dystrophy (MD) is a group of genetic diseases that cause muscles to weaken over time. Parenting a child with MD can present physical, emotional, and financial challenges. There are support options available to help with your child's mobility, mental health, and medical expenses.

A Word From Verywell 

Your child’s life with muscular dystrophy may be different than you imagined, but it's important to become as educated about the disease as possible. Researching, asking questions, partnering with your child’s healthcare team, and advocating for your child will become essential after diagnosis to ensure that your child can thrive to the best of their ability. Finally, finding a support system, whether it be family, friends, or hired help can be a tremendous help as you navigate the ups and downs of this disease.

Frequently Asked Questions

  • Can you tell if your child has muscular dystrophy before birth?

    Since muscular dystrophy is inherited, it can be helpful to meet with a genetic counselor before you try to conceive a baby. Diagnosis generally occurs around age 5, but parents may begin to notice abnormalities in their child’s ability to run, walk or jump around 2 1/2 years of age. However, congenital muscular dystrophy also affects 1 in 100,000 people, and muscle weakness can be apparent from birth or infancy.

  • How long do children live with muscular dystrophy?

    The life expectancy of children diagnosed with muscular dystrophy can vary. Some live a normal lifespan into adulthood due to milder disease, while other children with MD die in infancy and early childhood due to more severe disease that may affect their lungs or heart.

  • How bad is Duchenne muscular dystrophy compared to other types?

    Duchenne muscular dystrophy is the most common type of muscular dystrophy, with 6 out of 100,000 children diagnosed. Compared to other types of muscular dystrophy, Duchenne MD is often associated with a less favorable quality of life, especially for those children with limited mobility who need to use wheelchairs. Without aggressive care, they usually die in their late teens or early 20s from progressive heart muscle weakness, respiratory complications, or infection.

  • Can children with muscular dystrophy have a normal childhood?

    Depending on the severity of a child’s disease, they can lead a similar lifestyle to their peers. With more mild disease, a child will have more options to lead a more typical lifestyle. However, parents should focus on the child’s abilities and areas they excel in to provide them with the best life experiences possible. You may need to change your expectations for what you imagined your child’s life to be, but that doesn’t mean that your child can't have an enjoyable and satisfying childhood.

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9 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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