Table of ContentsView AllTable of ContentsMD in ChildrenSymptomsDiagnosis and TreatmentParentingMedical ExpensesFrequently Asked Questions
Table of ContentsView All
View All
Table of Contents
MD in Children
Symptoms
Diagnosis and Treatment
Parenting
Medical Expenses
Frequently Asked Questions
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.
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Muscular Dystrophy in Children
Muscular dystrophy stems from a lack ofdystrophin, 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 andBecker muscular dystrophy.
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.
WithDuchenne 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 with a mutated gene, 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:
Symptoms of Muscular Dystrophy
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.
Some tests and procedures that can be performed to help confirm the diagnosis include:
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 SpecialistsIn 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 therapistOccupational therapistCase manager or social worker
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 therapistOccupational therapistCase manager or social worker
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:
Medical Expenses to Prepare For
There may be special programs available at your local children’s hospital or through non-profit organizations like theMuscular Dystrophy Associationthat 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
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.
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.
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.
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.
9 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Centers for Disease Control and Prevention.Muscular Dystrophy: MD STARnet data and statistics.Andrews JG, Wahl RA.Duchenne and Becker muscular dystrophy in adolescents: current perspectives.AHMT. 2018;9:53-63. doi:10.2147/AHMT.S125739National Human Genome Research Institute.About Duchenne muscular dystrophy.National Institute of Neurological Disorders and Stroke.Muscular dystrophy information page.Cleveland Clinic.Muscular dystrophy.Abi Daoud MS, Dooley JM, Gordon KE.Depression in parents of children with Duchenne Muscular Dystrophy.Pediatric Neurology. 2004;31(1):16-19. doi:10.1016/j.pediatrneurol.2004.01.011Centers for Disease Control and Prevention.What is muscular dystrophy?Wei Y, Speechley KN, Zou G, Campbell C.Factors associated with health-related quality of life in children with Duchenne muscular dystrophy.J Child Neurol. 2016;31(7):879-886. doi:10.1177/0883073815627879National Institute of Neurological Disorders and Stroke.Muscular Dystrophy Information Page.
9 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Centers for Disease Control and Prevention.Muscular Dystrophy: MD STARnet data and statistics.Andrews JG, Wahl RA.Duchenne and Becker muscular dystrophy in adolescents: current perspectives.AHMT. 2018;9:53-63. doi:10.2147/AHMT.S125739National Human Genome Research Institute.About Duchenne muscular dystrophy.National Institute of Neurological Disorders and Stroke.Muscular dystrophy information page.Cleveland Clinic.Muscular dystrophy.Abi Daoud MS, Dooley JM, Gordon KE.Depression in parents of children with Duchenne Muscular Dystrophy.Pediatric Neurology. 2004;31(1):16-19. doi:10.1016/j.pediatrneurol.2004.01.011Centers for Disease Control and Prevention.What is muscular dystrophy?Wei Y, Speechley KN, Zou G, Campbell C.Factors associated with health-related quality of life in children with Duchenne muscular dystrophy.J Child Neurol. 2016;31(7):879-886. doi:10.1177/0883073815627879National Institute of Neurological Disorders and Stroke.Muscular Dystrophy Information Page.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Centers for Disease Control and Prevention.Muscular Dystrophy: MD STARnet data and statistics.Andrews JG, Wahl RA.Duchenne and Becker muscular dystrophy in adolescents: current perspectives.AHMT. 2018;9:53-63. doi:10.2147/AHMT.S125739National Human Genome Research Institute.About Duchenne muscular dystrophy.National Institute of Neurological Disorders and Stroke.Muscular dystrophy information page.Cleveland Clinic.Muscular dystrophy.Abi Daoud MS, Dooley JM, Gordon KE.Depression in parents of children with Duchenne Muscular Dystrophy.Pediatric Neurology. 2004;31(1):16-19. doi:10.1016/j.pediatrneurol.2004.01.011Centers for Disease Control and Prevention.What is muscular dystrophy?Wei Y, Speechley KN, Zou G, Campbell C.Factors associated with health-related quality of life in children with Duchenne muscular dystrophy.J Child Neurol. 2016;31(7):879-886. doi:10.1177/0883073815627879National Institute of Neurological Disorders and Stroke.Muscular Dystrophy Information Page.
Centers for Disease Control and Prevention.Muscular Dystrophy: MD STARnet data and statistics.
Andrews JG, Wahl RA.Duchenne and Becker muscular dystrophy in adolescents: current perspectives.AHMT. 2018;9:53-63. doi:10.2147/AHMT.S125739
National Human Genome Research Institute.About Duchenne muscular dystrophy.
National Institute of Neurological Disorders and Stroke.Muscular dystrophy information page.
Cleveland Clinic.Muscular dystrophy.
Abi Daoud MS, Dooley JM, Gordon KE.Depression in parents of children with Duchenne Muscular Dystrophy.Pediatric Neurology. 2004;31(1):16-19. doi:10.1016/j.pediatrneurol.2004.01.011
Centers for Disease Control and Prevention.What is muscular dystrophy?
Wei Y, Speechley KN, Zou G, Campbell C.Factors associated with health-related quality of life in children with Duchenne muscular dystrophy.J Child Neurol. 2016;31(7):879-886. doi:10.1177/0883073815627879
National Institute of Neurological Disorders and Stroke.Muscular Dystrophy Information Page.
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