What is Muscular Dystrophy?
Muscular Dystrophy (MD) is a degenerative disease in which the muscles of the body get weaker and weaker and slowly stop working. Degenerative means the condition worsens slowly over time. Your child’s muscles need many different kinds of proteins to stay healthy. When you hear the word “protein” you might think of such food as meat and peanut butter that contain protein. Your body also makes proteins, and your genes tell your body how to make proteins your muscles need. Children with muscular dystrophy have genes that have the wrong information or leave out important information, so the body can’t make these proteins properly. Without these proteins, the muscles break down and weaken over time. As this happens to muscles, children with muscular dystrophy begin to have problems with the way their bodies work.
Are there different kinds of muscular dystrophy?
Among the nine types of muscular dystrophy, seven affect children. The seven types are:
- Duchenne Muscular Dystrophy: The protein dystrophin helps to keep muscle cells whole and healthy. Duchenne Muscular Dystrophy happens when this protein is missing. It usually begins in early childhood (between the ages of 2 to 6). Duchenne eventually affects the heart and breathing muscles. Children with this kind of Muscular Dystrophy don’t usually live beyond the early 30s.
- Becker Muscular Dystrophy: This form of MD also happens when the body does not make enough of the protein dystrophin. It is very similar to Duchenne MD but often less severe. Many children with this type of MD have heart problems. Children with Becker’s MD though usually live to middle age older.
- Emery-Dreifuss Muscular Dystrophy: This type is caused by a sudden change in the genes hat produce proteins in the muscle cells. Each cell has a nucleus surrounded by a membrane where the proteins are suddenly changed. It usually begins by age 10. This type of MD progresses slowly. Heart complications are common.
- Limb-Girdle Muscular Dystrophy: This type is caused by a change in any one of a possible 15 genes that affect proteins the body needs for muscles to work. The beginning of this form of MD can occur anytime during childhood through adulthood. Limb-Girdle usually progresses slowly.
- Faciosapulohumeral Muscular Dystrophy: It is usually diagnosed by age 20. Faciosapulohumeral MD usually progresses slowly with some periods when the muscles worsen rapidly. It is caused by a missing DNA on chromosome 4. DNA is a necessary component of all living matter and a basic material in the chromosomes.
- Myotonic Muscular Dystrophy: The disease appears at birth in one form, but another form begins in teen or adult years. The progress of changes in how the muscles work can last 50 to 60 years. It is caused by a repeated section of DNA on either Chromosome 3 or 19. DNA is a necessary component in all living matter.
- Congenital Muscular Dystrophy: It is caused by changes affecting some of the proteins needed by muscles and can affect the eyes and brain. The disease begins at or very near birth. Sometimes this type progresses slowly, but still can cause a shortened life span.
Muscular Dystrophy Association, 2005
What are the common signs of muscular dystrophy?
The symptoms your child may experience will differ depending on which type of Muscular Dystrophy the doctor has diagnosed. Some symptoms for each type of MD are:
Duchenne Muscular Dystrophy: Your child may experience weakness over the entire body. The muscles become smaller and less useful over time, especially in the hips, pelvis, thighs and shoulders. The calf muscles of the lower leg often get bigger.
Becker Muscular Dystrophy: The symptoms are similar to Duchenne, but less severe.
Emery-Dreifuss Muscular Dystrophy: Your child may have weakness and “wasting” of shoulder, upper arm and calf muscles. “Wasting” means the muscles will deteriorate or become smaller and less useful over time. There may be some joint stiffening and fainting from heart abnormalities.
Limb-Girdle Muscular Dystrophy: Your child may experience weakness and “wasting” of shoulder and hip muscles. “Wasting” means the muscles will deteriorate or get smaller and less useful over time.
Faciosapulohumeral Muscular Dystrophy: The symptoms of this type of MD are weakness and “wasting” of the eye, mouth, shoulder, upper arm and lower leg muscles. Later children develop a weakness of abdominal muscles.
Myotonic Muscular Dystrophy: This form of MD brings a weakness and muscle twisting of the face, lower legs, forearms, hands and neck. The muscles contract and then have a delayed relaxation of muscles after contraction.
Congenital Muscular Dystrophy: Children with this type of MD have muscle weakness with possible joint stiffness or looseness depending on the type.
Muscular Dystrophy Association, 2005
What can I do to help my child?
You have made an important first step by reading more information on muscular dystrophy. Another step you can take is to talk to other parents of children with muscular dystrophy. They have gone through what you are going through now and may be able to help. You also can get lots of help from parent support and advocacy groups. To find groups near you please contact Help Me Grow. Research tells us that the earlier we begin to help children, the better the results for the child.
Below are some checklists of things you can do to help your child. Remember, you are not alone.
CHECKLISTS OF THINGS I CAN DO TO HELP MY CHILD
THINGS I CAN DO TO HELP MY CHILD WITH MUSCULAR DYSTROPHY
IN THE STATE OF FLORIDA:
Get my child evaluated (tested).
If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services. You can contact one of the centers closest to your home.
For more information or to make a referral to Early Steps, please call (800) 218-0001
or visit the contact list :http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf
If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing he/she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS) program. They also provide testing for special education programs.
Florida’s FDLRS Child Find
Florida Department of Education
Contact Children’s Medical Services (CMS):
CMS provides local offices and will sometimes refer children to medical centers that work with CMS. Services are provided to help care for children with disabilities, special needs, or major medical conditions, ranging from early intervention programs such as Early Steps to ones for a specific medical condition.
Children’s Medical Services
Main Phone: (850) 245-4200
Work with my child’s service providers:
A service provider is literally anyone who works with you and your child. It can be your pediatrician, a physical therapist, a teacher, a principal, a social worker, or any professional. Remember you know more about your child than anyone else. You are the main influence in your child’s life. Service providers are there to help you and your child. Here are some tips for speaking with service providers:
- Feel free to ask questions and make comments. No one knows your child better than you do. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular (like a speech evaluation or assistive technology), keep asking until you get it or until you learn why it is not needed.
- Work with professionals in early intervention or in your school to write your child’s IFSP or IEP to reflect your child’s needs and abilities. Be sure it includes related services such as speech-language pathology, physical therapy, and occupational therapy if your child needs these. Don’t forget about assistive technology, too.
Get more information: Visit more websites. Read a book. Watch a video on muscular dystrophy. Include your child and family. Talk to another parent. Help Me Grow can help you meet other parents and get services.
Help my child’s physical movements and development:
Take part in family fun, recreation activities, play and all parts of your daily life. Having muscular dystrophy doesn’t mean your child should miss out. There are many ways you can encourage your child to learn and develop better movement and control of muscles at home and in the community. Many summer and outdoor activities are available to you and your child.
Dial 211 to find recreation areas and programs
Urge your child to move around. Try to do whatever gets your child moving. For example, put a favorite toy just out of reach, or try “dancing” with your child, playing, rolling on the floor or swinging. Encourage your child to have move and have fun like any child.
Think of fun and normal ways to encourage your child’s use of small muscles (such as those in your fingers and face). Some examples: Let your child use fingers to eat. Encourage your child to finger-paint, draw, make things with Playdough. Practice making faces or play games using hands and/or the face.
Assistive technology may help your child. Ask professionals who evaluate your child what assistive technology can do to help. Some examples of assistive technology may be:
- Computer with a touch screen to communicate (picture at left).
- A spoon with a special handle so a child can feed him/herself (see picture at right).
- A special device that holds your child’s clothes to help her/him get dressed.
Learn more about what you can do for your child. Ask lots of questions about how and what you can do to let your child live up to full potential while living your typical life. While doing ordinary things like eating, bath time, shopping, traveling in the car, family outings, are the perfect times to make a difference in your child’s abilities.
Help my child’s speech and language skills:
Talk with him/her: Just talking with your child can encourage speech and language skills. Talk with your child. For example, while shopping in the grocery store you could name each item as you put it in the grocery cart. Talk about color and shape. Your child will learn how to talk from listening to you.
If your child tries to speak with you, give him or her plenty of time to answer. Your child may have lots to say, but it may take longer to get it out.
Play with your child: Try to spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but often helps. Music tapes to which a child can sing along also are very effective.
Read with your child and point to the objects in the pictures to help develop his/her language.
Ask your child’s speech and language therapist what you can do at home. It is important to get your child’s speech and language skills evaluated (tested). Don’t worry if your child is too young to talk yet. Speech and Language therapists will see very young children, even infants! It’s never too early to get a communication (language) assessment (test). Especially for a baby or toddler who may have an oral motor difficulty. This means they have problems talking, biting, chewing, or swallowing because they don’t have good control over the tongue, lips, and cheeks to do these things.
I will have my child wear a Medic Alert bracelet: This is important because in case of an emergency very important information on your child’s condition is available.
Talk with my child’s teacher often: Keeping your child’s teacher updated on your child’s medical condition is very important. Help the teacher identify ways your child can succeed in the classroom.
Get my child counseling to help him or her deal with having muscular dystrophy: All children want to be like their friends. Children with chronic illnesses cannot always be like their friends. They often have feelings of anger, frustration and isolation because of their illnesses. They need a trusted adult to share those feelings with. They often need help in learning how to deal with those feelings. A counselor at school can be that trusted adult for your child.
Provide opportunities to my child to discuss feelings: Listen to children. Do not tell them feelings are silly. Depression can be a big problem for children with chronic illness. Talking about feelings helps a lot.
Help my child connect to other children or teenagers with muscular dystrophy: It helps older children to connect with other teenagers with the same challenges. They discover they are not alone in their problems. They can share ideas for how to deal with those challenges. They don’t feel different when they are with other people who have MD and can make friends with them.
This website for teens connects them with other teenagers with MD http://www.nlm.nih.gov/medlineplus/musculardystrophy.html#children
Think about sending your child to a summer program or camp for children with muscular dystrophy. Each year the Muscular Dystrophy Association supports nearly 90 summer camps across the United States. MDA Camp is a magical place where a child with a disability can just be a kid. They also learn skills to use all year. Go to this website to find one near you for your child. They are generally low cost or free.
How can I deal with all of this?
First of all you need to take care of yourself!
Having a child with a disability is hard work. Yes, there are times of joy and celebration, but times of heartbreak, too. It is easy to get overwhelmed.
Yes, you can make a difference in your child’s life by working with your child and therapists, doctors, and teachers. But before you can take care of anyone else, you need to be kind to yourself. Taking care of yourself is not selfish, but instead necessary. You can’t help your child, if you are overworked and overstressed.
Figure out how to take care of your own needs. The next time friends or family say, “What can I do to help?” let them babysit or lend a hand so you can have some time to yourself. Below are some things to “recharge your batteries”:
- Do something that makes you feel happy. It could be going out with a loved one or friends, taking long baths, or a creative project.
- Exercise is also vital for your mind, body, and spirit. Remember to exercise – like long walks, lifting weights, bike riding, or an aerobic class. Make sure it is fun.
- Talk with other parents of children with disabilities.
- Stay hopeful: Many parents find the following poem, “Welcome to Holland,” to be a comfort. Click here to read Welcome to Holland.
Do many children have muscular dystrophy?
Muscular dystrophy is very rare. Counting all kinds of muscular dystrophy, there is still only one case out of about 650,000 births. Some types of MD happen more often than other types. Duchenne, Emery-Dreifuss, and Faciosapulohumeral MD are the most common. The other types are extremely rare.
Wrong Diagnosis, 2005 & Fletcher – Janzen & Reynold, 2003
What does muscular dystrophy mean for the health of my child?
Much research is being done to find a cure for muscular dystrophy. Muscular dystrophy is genetic, meaning it is a disease passed from parents to children through genes. Researchers are trying to repair the faulty genes that cause the muscle problems and use cell therapy as possible cures. Until a cure is found, though, many children with MD can benefit from these treatments:
- Physical therapy.
- Speech therapy.
- Orthoses or braces.
- Breathing exercises.
- Corrective surgery.
- Steroids treatments.
Physical therapy helps maintain the range of motion or full normal movement of the joints. Children also may need braces and passive stretching to be able to walk and feed themselves independently for as long as possible. Steroid treatments sometimes can cause puffiness and weight gain unrelated to the MD. Steroids also can cause mood swings.
Children with MD do breathing exercises, such as blowing into a tube to make a ball go up. This helps fill their lungs with air and helps prevent them from getting pneumonia, an infection of the lungs.
If your child is found to have cognitive problems (mental problems), they don’t get worse even if your child’s muscles do keep getting weaker. Cognitive problems refer to how the brain works.
Children with MD may use canes and leg braces to help them walk. They may even use wheelchairs when their muscles get weaker. Some children have specially trained dogs to open doors for them and carry books or toys. Children with MD like to do the same things as other children – to be outside, play games, watch TV. Children with MD can go to special summer camps.
Fletcher – Janzen & Reynold, 2003 & Muscular Dystrophy Association, 2005, KidsHealth 2005
How did my child get muscular dystrophy?
Muscular dystrophy is not contagious, meaning you can’t catch it from another person. Muscular dystrophy happens because of a problem with a person’s genes. Your genes are passed down to you from parents and contain information about all kinds of stuff, determining eye color, hair color, height and whether you will have certain medical problems.
What does muscular dystrophy mean for my child’s intelligence and learning?
Most children with neuromuscular diseases (disorders that affect the muscles) can do the same school work as other children. Many are intellectually gifted. But class work and homework assignments present special challenges for any child who can’t lift or hold a book, or even a pencil.
Some kids with neuromuscular disorders can write an assignment by hand, but it could tire them for the rest of the day. Some can do math problems rapidly in their heads, but need extra time to get them down on paper. As students’ progress through high school and college, finishing exams in the time allotted and writing long papers present new problems to weak muscles.
Federal and state laws require schools to make the necessary modifications to enable students with disabilities to do their work. Parents, teachers and students can work together to find and create modifications, assuring these children get the appropriate level of educational challenge. Ask your child’s school about appropriate modifications and accommodations.
MDA Quest August 98
Some children with muscular dystrophy will have cognitive difficulties. It is important for parents and teachers to be careful when observing children. As the disease progresses, some children will appear to develop problems with learning and reasoning. Do not mistake slowness and limitations in physical abilities as a cognitive problem. Mental abilities are usual stable and do not worsen over time. Several researchers have suggested that if cognitive problems are present among children with MD, they may be particularly common in areas of verbal learning abilities.
Porter, Hall, & Williams, 1999
What are some professionals my child may need to see?
- Your child may need to see many different health care providers or specialists. These are often referred to as health care or service providers. This means anyone who works with you and your child. It can be any of the types of professionals listed below:
- Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works only with children.
- Pediatric Cardiologist: A doctor who specializes in treating children with heart problems.
- Pediatric Orthopedist: A doctor who specializes in treating children with conditions of the muscles and joints.
- Respiratory Therapist: A medical professional who specializes in treating patients with conditions that affect breathing.
- Dietician or Nutritionist: A medical professional who advises patients on nutrition and how what they eat keeps them healthy.
- Pediatric Physical Therapist: A medical professional who treats children with conditions of the joints and muscles using exercise and massage
- Pediatric Occupational Therapist: A medical professional who treats children with conditions of the joints and muscles using “small motor exercises” to help children be more independent with daily living skills. Pediatric OTs also recommend adaptive equipment to enable a child to be more independent with such life skills as eating and dressing.
- Mobility Specialist: A professional who teaches patients the skills needed to move around more independently. Mobility specialists also advise on special equipment to increase independence.
- Pediatric Neurologist: A doctor who specializes in treating children with neurological diseases, diseases of the brain and nervous system
- Assistive Technology Specialist: A person who works with individuals with disabilities to provide assistive technology solutions to help with problem areas. Assistive technology or assistive devices help a person with a disability with any daily living task such as eating, speaking, getting around, working, playing, etc. An assistive technology specialist is familiar with different options to help your child live life to the fullest. Learn more about what assistive technologies are available to your child. Some services and devices may be covered under Medicaid.
- Pediatric Speech-Language Therapist: A professional who evaluates and treats communication disorders and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.
- Social Workers and Counselors: They provide counseling as well as emotional support for the family and child. They may help coordinate services, too.
- Care Coordinators: They are responsible for organizing the details across agency lines, serving as the single point of contact in helping your family get help.
What are some websites where I can read more about muscular dystrophy?
- Facioscapulohumeral Dystrophy (FSHD) Society http://www.fshsociety.org
- Muscular Dystrophy Association http://www.mdausa.org
- Muscular Dystrophy Family Foundation http://www.mdff.org
- Parent Project Muscular Dystrophy (PPMD) http://www.parentprojectmd.org
- International Myotonic Dystrophy Organization http://www.myotonicdystrophy.org
- Muscular Dystrophy Association http://www.mdausa.org/ An international organization made famous by Jerry Lewis and his annual telethon on TV. This website contains a wealth of information on the various types of MD in easy-to-access fact sheets. It also has testimonials from people living with MD and their experiences.
- Muscular Dystrophy Campaign http://www.muscular-dystrophy.org/ This website contains helpful fact sheets on each type of MD plus care and support information, e.g., advice, medical care, personal care and support, daily living issues, adaptations, equipment and wheelchairs, grants for equipment.
- National Institute of Neurological Disorders http://www.ninds.nih.gov/disorders/md/md.htm An institute that is part of the National Institute of Health.
- NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/musculardystrophy.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.
- KidsHealth http://kidshealth.org/kid/health_problems/bone/muscular_dystrophy.html A great site for children and teenagers to better understand the disease.
- Bandaids and Blackboard A great site for kids, teens and parents of children with medical challenges.http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html
What are some books I can read to my child or for myself?
Buddy (An Owlet Book) by Audrey Osofsky, Ted Rand (illustrator). This tells the story of a young boy with muscular dystrophy who goes to a special camp where he is paired with a golden retriever. The book is easy to read and highlights the desires of a child with MD to be independent and to be treated as other children. (Ages 7-11)
Homemade Books to Help Kids Cope: An Easy-To-Learn Technique for Parents and Professionals by Robert G. Ziegler. This book shows parents and teachers how to create personalized books for children to fit any medical condition or situation. The techniques in this book go a long way in aiding in conversation with children in difficult situations. (For adults to use with children)