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Respiratory and Pulmonary Care

This Section is Focused on the Critical Aspects of Respiratory Care for Patients with Spinal Muscular Atrophy.  

Respiratory (breathing) problems are the leading cause of illness for children with SMA.  They are the most common cause of death for children with SMA Type I and SMA Type II.  Respiratory care interventions are essential to the survival and comfort of children with SMA. 

Click here to download the booklet:
BreathingTN

This booklet reviews the following important topics:
          -Assessment, evaluation and monitoring.
          -Breathing exercises for lung development.
          -Coughing practice for airway clearance.
          -Removal of mucus from airways and lungs.
          -Measuring oxygen levels.
          -Breathing support options.
          -Care during a cold.
          -Perioperative evaluation.

If you would like a hard copy mailed to you please email us at info@fsma.org or call (800) 886-1762.

This booklet was produced with the kind support of the Angel Baby Foundation.

 

Respiratory Care Choices for SMA Type I's.

Keeping Your Lungs Healthy - Issues for SMA Type II's.

Please click to order a Daily Respiratory Care DVD.

Please click here for articles by John R. Bach, M.D. on Managing SMA by Non-Invasive Respiratory (NIV) Aids.

Last updated February 19, 2009.

Additional Sources of Information
  •  
  • A Young Man's Voice (Experience with a Tracheotomy)
    Reprinted in part with permission from the Muscular Dystrophy Family Organization
  •  
  • Aaron's Tracheostomy Page
    Extensive and detailed information and diagrams about pediatric trachs and their care
  •  
  • Care Guidelines for SMA Children with Acute Respiratory Illness
    By Dr. Mary Schroth and Dr. Kathy Swoboda.
  •  
  • Chest Physiotherapy in SMA
    From the Jennifer Trust for SMA.
  •  
  • Cough Assist Machine
    Health fact sheet from the University of Wisconsin.
  •  
  • Dr. Swoboda's Respiratory Page
  •  
  • Draft of letter of Medical Necessity for Cough Assist (In-Exsufflator)
    From Dr. Bach (www.doctorbach.com).
  •  
  • Every Breath You Take Part I
    June Price With editorial assistance from Edward Anthony Oppenheimer, M.D. Pulmonary & Critical Care Medicine, Los Angeles, CA
  •  
  • Every Breath You Take Part II
    Pneumonia Noninvasive Ventilation & Oxygen Availability Edward Anthony Oppenheimer, M.D. With an introduction by June Price
  •  
  • Hope and Life after Traching and Venting
    A letter from Karen Ruhle.
  •  
  • In-Exsufflators 101
    A Practical Guide to the Use of an In-Exsufflator (Cough Assist) by Tom Tomko.
  •  
  • International Ventilator Users Network
    IVUN is a worldwide network of ventilator users and health professionals experienced in and committed to home care and long term mechanical ventilation.
  •  
  • IPV - A Well Kept Secret
    An article by Carol Anderson.
  •  
  • Masks: Non-Invasive Interfaces
    By Diana Guth, RRT, owner of Home Respiratory Care, Lost Angeles, CA.
  •  
  • My Way IS the Highway - Powering Your Medical Equipment on the Road
    An article by Dana Craven, mom of SMA type 1.
  •  
  • Neurological Disease Raises Risk of Complications from Flu
    Study Supports Annual Flu Vaccination for Children with Neurological Conditions Information provided by the Children's Hospital of Philadelphia - www.chop.edu
  •  
  • Pediatric Noninvasive Ventilation / Mask and Ventilation Sources
  •  
  • Pediatric Trach Care
    From www.tracheostomy.com
  •  
  • RECOMMENDATIONS FOR POST-OPERATIVE CARE OF CHILDREN WITH NEUROMUSCULAR DISEASE FOLLOWING SURGERY
    Prepared by Mary Schroth, MD, Pediatric Pulmonary, Univ of Wisconsin
  •  
  • Respiratory Care of SMA and Choices
    By Dr. Mary Schroth
  •  
  • Respiratory Issues in SMA
    Transcript of chat with Dr. Mary Schroth.
  •  
  • Special Considerations in the Respiratory Management of SMA
    By Dr. Mary Schroth.
  •  
  • Supporting Article on the Benefits of In-Exsufflator
  •  
  • The CoughAssist® Mechanical In-exsufflator Cough Machine
    New HCPCS Code for the CoughAssist (formerly In-Exsufflator)
  •  
  • The Vest(TM) airway clearance system
    News Release May 19, 2003 from Advanced Respiratory
  •  
  • To Trach or Not To Trach
    By Vicki Cornelius, CRTT
  •  
  • Watch a short video of real-life Couph Assist users.

     

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