The Management of Congenital Muscular Dystrophy ... - Cure CMD

Advocate:To work with your child’s health care providersas a team member to do the best thing for yourchild. This sometimes may mean speaking upwhen you are uncomfortable with a situationor plan of care, seeking out a second opinion,or identifying an advocate within your child’shealth care team.Anticoagulants:A group of medications that thin the blood toprevent it from forming clots (which causeblockages in the blood vessels). The heart doesnot have to work as hard to pump thinnerblood, but when people are on this type ofmedication they can bleed easily. Some commonanticoagulant medications used in the UnitedStates are warfarin (Coumadin), heparin, andaspirin, but there are also other options yourchild’s cardiologist may choose.Anticonvulsant therapy:Medications that reduce the frequency andseverity of seizures. Sometimes seizures canstop completely when a person is on ananticonvulsant. Some common anticonvulsantsused in the United States are valproic acid(Depakote), levetiracetam (Keppra), zonisamide(Zonegran), and topiramate (Topamax), butthere are also many other options your child’sneurologist may choose. Anticonvulsants areoften used for other conditions not relatedto seizures or epilepsy.Arrhythmia:A change in the rhythm of the heart’s beating.Arthrogryposis:A condition that results in an infant being bornwith multiple contractures. This can be an earlysymptom of CMD but may be confused withother causes for contractures seen at birth.Aspiration:When something (food, liquid, mucus, etc.) goesinto the lungs instead of into the stomach or outthe mouth or nose. When a substance is aspiratedinto the lungs, it can lead to a lung infection(like pneumonia).Atelectasis:collapse of part (or all) of a lung. This canbe caused by a blockage of the airways or bypressure on the airways from outside the lungs.Beta-blockers:A group of medications that cardiologists useto decrease the heart rate by slowing downthe speed at which the heart beats. Thesemedications also help open the blood vesselsand lower the blood pressure. Some commonbeta-blockers used in the United States areatenolol, nadolol (Corgard), and propranolol(Inderal), but there are also many other optionsyour child’s cardiologist may choose.Beta-blockers are also used for other conditionsnot related to the heart.Bi-PAP:Abbreviation for bilevel positive airway pressure,one of the most commonly used forms ofnoninvasive ventilation. Bi-PAP has two levelsof airway pressure: a high pressure when theperson breathes in and a low pressure when theperson breathes out. A Bi-PAP machine can beprogrammed to cycle when the person breathes,or it can be set to a timed cycle.Blood gases:A test to measure the concentrations of oxygen(O2) and carbon dioxide (CO2) in the blood,along with blood pH and bicarbonate level.Breath stacking techniques:A type of respiratory therapy. The patient uses aspecial bag equipped with a one-way valve andmouthpiece to take a series of breaths withoutexhaling, expanding the lungs beyond what heor she can accomplish with a single breath. Thisstretches the lungs and opens clogged airways.Cardiomyopathy:A disease of heart muscle that causesenlargement of the heart and rigidity of thewalls of the heart. It can be a complication ofother heart diseases.Composite motor skills:A way of measuring several different types of34