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Muscular Dystrophy

Laura Norwine and Clanci MacKenzie

Surgery

Characteristics

  • *Progressive disease*

Etiology

  • Performed to improve walking and prolong the ability to walk
  • Variability as to how this is don’t and to what extent
  • Pg. 238 Figure 13-3
  • Scoliosis is very dangerous in MD and can cause curves greater than 90 degrees…Spinal surgeries and other aggressive surgeries may be performed to lengthen and improve the quality of life

Medication & Treatment for Respiratory Management

Infants & Young Children

  • Usually achieve motor milestones within normal time frame or delayed slightly.
  • Signs of the disease become apparent between 2-5 years of age.
  • Weakness in legs and pelvis.
  • Difficulty in walking, running and using stairs.

Ages 5-10

Teenage Years & Beyond

Ages 10-12

  • Decrease in muscle strength, increase in development of contractures (permanent shortening of muscle joint)
  • Weakening of elbows, hips, knees and ankles.
  • Back muscles may begin to weaken causing Scoliosis.
  • Majority of children affected have IQ's in the lower rang, 20%-35% have intellectual disabilities. Many have IQ's in the high-gifted range.
  • Muscle weakness progresses.
  • As arms become weaker, a switch from manual wheelchair to power wheelchair will be necessary.
  • Muscles in the neck, shoulders, and back will lose strength.
  • Cardiac and Respiratory muscles will weaken causing fatigue and "breathy" or raspy voice.
  • Many people with MD are not expected to live past their teenage years because they wull begin to have respiratory and cardiac problems.

  • Lose ability to walk, require a wheelchair.
  • Loss of ambulation (walking) varies from child to child, some may require a wheelchair as early as 7yrs. old.
  • Important to prolong process because as soon as the child loses ability to walk, scoliosis will progress quickly.
  • Respiratory infections have an increased incidence in MD
  • At a young age child may receive chest physiotherapy, which will help loosen respiratory secretions
  • Some individuals will have breathing exercises that need to be done on a regular basis and may use an assisted cough machine

Description

Exercise & Diet

Signs & Symptoms

  • Inactivity can be detrimental…however, you must be cautious with what type of activity is being done
  • Swimming is a great form of exercise
  • A dietician will help student/s make healthy food choices

  • Clumsiness or lack of coordination.
  • Tentative diagnosis can be made based on family history or lab tests.
  • Test amount of CK (creatine kinase) in blood. Levels above 400 are considered abnormal, people with MD often have counts in the thousands.
  • Other tests include: EKG, muscle biopsy, genetic testing.
  • Prenatal testing: fetal blood sampling or amniocentesis.

A disorder that has progressive muscle weakness caused by degeneration of muscle of fibers. There are four main criteria to be considered in order to be classified as Muscular Dystrophy.

Educational Implications

Etiology

“As the students physical abilities decrease, the educator must make increasing adaptations to allow for physical participation in academic and nonacademic activities. The teacher must also be ready to provide emotional support to a student with muscular dystrophy and cope emotionally with having a student with a degenerative disorder.”

Meeting Daily Living Needs

Meeting Students Needs

MD is a genetically based disease. Specific genes have been identified for causing different forms of of MD.

  • Duchenne- caused by an abnormal gene of the X chromosome at the Xp21 locus.

MD is a X linked recessive disorder, The defective gene is carried by the mother. Thus, the disorder is more common among males. Females can be carriers of the gene but are rarely affected by the defective gene.

  • As disease progresses adaptions will increase such as changing, feeding, mobility and independence as a whole
  • Provide parents with information on adaptive clothing to make it easier at school and home
  • As student weakens may eventually need help transferring form wheel chair to the toilet although there is usually not loss of bowel or bladder control.

BE AWARE!

  • Monitor students needs daily and changing of their physical condition i.e. fatigue, stamina, motor ability, mobility
  • Set goals as a team for student and keep anecdotal records to document and inform other teammates of areas that may need further adaption
  • Story about Lupita*
  • Make any adaptions necessary (shorter tests, have the student leave early to get to lunch if they are walking that day etc.)

Meeting Behavioral & Social Needs

Meeting Communication & Learning Needs

  • As a teacher always be available and aware of what’s going on socially with your students
  • Discuss and brainstorm solutions with the student if there is ever a problem
  • Keep parents and other team members “in the loop”

  • Verbal communication is usually not problematic in MD
  • Nonverbal communication is an issue because these students with sever MD may have their facial expressions impacted and be misunderstood
  • Students have a range of intellectual abilities from ID to gifted
  • Students may fail to perform tasks not because they are unable but because of other factors
  • Think how well you learn when your body hurts…now try and learn every day in pain or fatigue

References

Treatment

  • Understanding physical, health, and multiple disabilities By Kathryn Wolff Heller, Paula E. Forney, Paul A. Alberto, Sherwood J. Best and Morton N. Schwartzman
  • U.S National Library of Medicine
  • http://google,com/search?q=Xp21+locus

Physical & Occupational Therapists

  • No cure and no specific treatment.

Orthopedic Management

  • Children receive physical therapy to prolong mobility and stretch the muscles to prevent or minimize contractures
  • Braces and orthotics may be prescribed to assist with walking or for positioning to prevent contractures
  • OT’s suggest techniques and tools to compensate for the loss of dexterity and strength
  • Many other assistive devices may be implemented by the physical or occupational therapist to assist with mobility, academics, and daily living skills, such as eating, dressing, or using the restroom.”

  • Treatment often begins with physical therapy in order to help strengthen muscles in order to walk and independently function as long as possible.
  • After mobility is lost, the goal is to teach independence with a wheelchair and manage complications of symptoms.
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