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The Care Team

Assembling a Care Team

We recommend a coordinated, multidisciplinary approach to care that allows many specialists to give input into the best and most appropriate care for each person with Duchenne or Becker. This may involve seeing healthcare providers including:

Keep in mind that every person with Duchenne and Becker is different, and not every person will need to see all of these specialists. 

Cardiology

Heart Care

A cardiology (heart) specialist should check the heart when the diagnosis of Duchenne is made, and then every 2 years until age 10.  After age 10, the heart should be checked each year. Read more about heart care.

Dentist

  • Your child should have a dentist visit every 6 months (by a traditional dentist).
  • Tooth decay and plaque buildup may increase as jaw muscles get weaker.
  • Other tooth symptoms of Duchenne include a widening of the jaw and spaces between the teeth.
  • Talk to your dentist about ways to improve dental care, and what you can do to avoid potential health problems such as gum disease and infection.

Developmental Pediatrics

Psychosocial CareDevelopmental-behavioral pediatricians manage the medical and psychosocial aspects of children’s and adolescents’ developmental and behavioral problems.

Endocrinology

Hormone and Growth IssuesEndocrinology specialists manage concerns and problems related to hormones, including concerns about growth and puberty. The use of steroids may lead to hormone issues in people with Duchenne. Read more about endocrine system care.

Gastroenterology

GI IssuesGastroenterology specialists deal with issues related to the digestive system. Many people with Duchenne have GI issues, which may be worse when people are taking steroids. Read more about gastrointestinal and nutritional issues in Duchenne.

Genetic Counseling

Diagnosis and Genetic TestingA genetic counselor can explain the cause[s] of muscular dystrophy, the typical symptoms, and how the disorder tends to progress. The genetic counselor can explain and order diagnostic genetic testing for your child and help the mother get carrier testing. The genetic counselor also can talk through your feelings and discuss family issues. Read more about diagnosis.

Neurocognitive

Psychosocial CareProviders who specialize in neurocognitive evaluation and treatment help with challenging behaviors and differences in development. Read more about behaviors in Duchenne.

Occupational therapists (OT)

Muscle CareOccupational therapists (OT) help participate in the things they want and need to do through the therapeutic use of everyday activities. OTs may be especially useful in helping people with Duchenne find and use adaptive equipment. Read more about muscle care.

Orthopedics

Bone and Joint CareOrthopedic providers specialize in the diagnosis and treatment (including surgery) of problems of the musculoskeletal system. The musculoskeletal system includes bones, joints, ligaments, tendons, muscles, and nerves. Read more about bone care.

Physical Medicine and Rehab

Physical Medicine and Rehabilitation specialists work to improve functional ability and quality of life for people with physical disabilities. A doctor trained in this field is called a physiatrist or a rehab medicine specialist. 

Physical therapy (PT)

Muscle CarePhysical therapy (PT) will be an important part of a young person’s life from the time of his Duchenne diagnosis. Physical therapists supervise active exercise, passive stretching, hydro-based (water) therapy, as well as regularly monitoring the spine, musculoskeletal, and respiratory function. Physical therapists play a major role in the prescription and provision of adaptive seating and equipment, and help school staff in a wide range of modifications. Read more about muscle care and about bone care.

Psychology and Psychiatry

Psychosocial CarePsychologists and psychiatrists help to improve and maintain good mental health. Other providers also treat mental health, including social workers and family therapists. Individuals with Duchenne and the entire family face a lot of stress and anxiety.  Individual and family therapy may be very useful. Read more about mental health in Duchenne. 

Pulmonology

Lung CareA pulmonary (lung) specialist should see a child with Duchenne who is still walking at least once a year, and a child who is no longer walking at least once every 6 months. Read more about lung care.

Speech/Language Therapy

GI IssuesSpeech-language pathologists (also called speech therapists) diagnose and treat communication and swallowing disorders. People with Duchenne are more likely to have speech delays or differences and/or swallowing issues. 

Social Work

Social workers may help families adjust to a diagnosis of Duchenne, find needed services, or engage with school staff around modifications.

Surgery

People with Duchenne may need surgery and the use of general anesthesia is risky—sometimes because of Duchenne (such as scoliosis surgery or joint contracture surgery) and sometimes for unrelated reasons. Read important information about safer anesthesia during surgery.

 

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