{"id":13308,"date":"2022-05-02T14:33:26","date_gmt":"2022-05-02T14:33:26","guid":{"rendered":"https:\/\/laforcedmd.com\/quick-guige-management-of-dmd\/"},"modified":"2022-10-20T20:04:02","modified_gmt":"2022-10-20T20:04:02","slug":"quick-guige-management-of-dmd","status":"publish","type":"page","link":"https:\/\/laforcedmd.com\/en\/quick-guige-management-of-dmd\/","title":{"rendered":"Quick guige &#8211; Management of DMD"},"content":{"rendered":"<div class=\"wpb-content-wrapper\">[mk_page_section vertical_align=&#8221;center&#8221; bg_image=&#8221;https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/header-agir.jpg&#8221; bg_position=&#8221;center center&#8221; bg_repeat=&#8221;no-repeat&#8221; bg_stretch=&#8221;true&#8221; enable_3d=&#8221;true&#8221; min_height=&#8221;250&#8243; full_height=&#8221;true&#8221; el_class=&#8221;section-header header-02&#8243; sidebar=&#8221;sidebar-1&#8243;][vc_column][vc_column_text disable_pattern=&#8221;false&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1653599250954{margin-bottom: 0px !important;}&#8221;]\n<h1><span class=\"titre-beige\">Management<\/span><br \/>\n<span class=\"titre-jaune\">of dmd<\/span><\/h1>\n[\/vc_column_text][\/vc_column][\/mk_page_section][vc_row][vc_column][mk_padding_divider size=&#8221;25&#8243;][mk_padding_divider size=&#8221;25&#8243; visibility=&#8221;visible-sm&#8221;][vc_column_text disable_pattern=&#8221;false&#8221; align=&#8221;center&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193935365{margin-bottom: 0px !important;}&#8221;]\n<p class=\"txt-style2\">What do you do after your child has been diagnosed with Duchenne?<\/p>\n<p class=\"txt-style2\">How will the disease evolve?<\/p>\n<p class=\"txt-style2\">What can you do as a parent to ensure you\u2019re making the right decisions about treatment as it progresses?<\/p>\n<p>Here\u2019s a quick overview of what you need to know&#8230;[\/vc_column_text][mk_padding_divider size=&#8221;75&#8243;][\/vc_column][\/vc_row][mk_page_section vertical_align=&#8221;center&#8221; bg_image=&#8221;https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-75.jpg&#8221; bg_position=&#8221;center center&#8221; bg_repeat=&#8221;no-repeat&#8221; bg_stretch=&#8221;true&#8221; enable_3d=&#8221;true&#8221; min_height=&#8221;250&#8243; full_height=&#8221;true&#8221; el_class=&#8221;section-header header-02&#8243; sidebar=&#8221;sidebar-1&#8243;][vc_column][\/vc_column][\/mk_page_section][vc_row fullwidth=&#8221;true&#8221; css=&#8221;.vc_custom_1650899369675{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_column css=&#8221;.vc_custom_1650899375035{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_accordions style=&#8221;simple-style&#8221; open_toggle=&#8221;-1&#8243; container_bg_color=&#8221;&#8221; responsive=&#8221;false&#8221; scroll_click=&#8221;true&#8221; el_class=&#8221;liste-accordion liste-gestion-dmd remove-first-border accordion-hide-title&#8221;][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Maintaining muscle strength and function&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner el_class=&#8221;border-section&#8221;][vc_column_inner el_class=&#8221;bg-height-02&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1654800318041{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-41.jpg?id=11732) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193838068{margin-bottom: 0px !important;}&#8221;]\n<h2>Maintaining muscle strength<br \/>\n<span class=\"titre-jaune\">and function<\/span><\/h2>\n<h3 class=\"sous-titre\">What assessments should be done and why?<\/h3>\n<p>Your child should have regular check-ups with a neuromuscular specialist, who has the expertise to monitor how things are going and to detect anything unusual that may need additional evaluation.<\/p>\n<p>You need this information:<\/p>\n<ul class=\"liste\">\n<li>To make timely decisions about treatment<\/li>\n<li>To anticipate and prevent problems that may arise.<\/li>\n<\/ul>\n<p>It is recommended that your child see your family doctor every six months and the neuromuscular specialist, physiotherapist and occupational therapist about every four months, if possible.<\/p>\n<p>Tests that monitor DMD may vary in different clinics, so it\u2019s essential to use the same clinic consistently unless your doctor advises otherwise. The most important thing is to have regular tests to monitor the progress of DMD so that your doctor can properly evaluate the effects of your child\u2019s current therapy and advise when to consider other forms of treatment.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Monitoring a child\u2019s ability to move \u2013 Assessment of motor function&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner el_class=&#8221;bg-height-03&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1655152882566{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-76.jpg?id=11856) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193845846{margin-bottom: 0px !important;}&#8221;]\n<h2>Monitoring a child\u2019s ability<br \/>\n<span class=\"titre-jaune\">to move \u2013 Assessment of motor function<\/span><\/h2>\n<p>Physicians, specialists, orthopedic physical therapists, occupational therapists, medical technicians, wheelchair and other device providers, and orthopedic surgeons may assess your child\u2019s motor function to monitor muscle extensibility and joint contractures as part of routine follow-up examinations and rehabilitation.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Looking after bones \u2013 Orthopedic management&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner el_class=&#8221;bg-height-01&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1655152229453{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-73-2.jpg?id=11850) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193851731{margin-bottom: 0px !important;}&#8221;]\n<h2>Looking after bones \u2014 <span class=\"titre-jaune\">Orthopedic management<\/span><\/h2>\n<p>People with DMD who are not treated with corticosteroids have a 90% chance of developing scoliosis \u2013 a lateral curvature of the spine that worsens over time. Researchers have found that daily administration of steroids reduces the risk of scoliosis or at least delays its onset.<\/p>\n<p>Proactive management of the risk of scoliosis requires:<\/p>\n<ul class=\"liste\">\n<li><a class=\"lien cursor-target\" href=\"http:\/\/www.dmd-guide.org\/fr\/orthopaedic-management\/surveillance\/\">Monitoring<\/a><\/li>\n<li><a class=\"lien cursor-target\" href=\"http:\/\/www.dmd-guide.org\/fr\/orthopaedic-management\/prophylaxis\/\" target=\"_blank\" rel=\"noopener\">Preventive measures<\/a><\/li>\n<li><a class=\"lien cursor-target\" href=\"http:\/\/www.dmd-guide.org\/fr\/orthopaedic-management\/treatment\/\" target=\"_blank\" rel=\"noopener\">Treatment<\/a><\/li>\n<li><a class=\"lien cursor-target\" href=\"http:\/\/www.dmd-guide.org\/fr\/orthopaedic-management\/bone-health-management\/\" target=\"_blank\" rel=\"noopener\">Bone health management<\/a><\/li>\n<li><a class=\"lien cursor-target\" href=\"http:\/\/www.dmd-guide.org\/fr\/orthopaedic-management\/long-bone-fracture-management\/\">Management of long bone fractures<\/a><\/li>\n<\/ul>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Looking for breathing muscles \u2013 Pulmonary management&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner el_class=&#8221;bg-height-01&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1654801158335{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-45.jpg?id=11740) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;smaller-inner-padding&#8221; css=&#8221;.vc_custom_1654193857855{margin-bottom: 0px !important;}&#8221;]\n<h2>Looking for breathing muscles \u2014 <span class=\"titre-jaune\">Pulmonary managements<\/span><\/h2>\n<p>Usually, children with DMD don\u2019t have trouble breathing or coughing while they are still walking. However, as they get older, their breathing muscles are eventually affected. They are at risk of chest infections, often due to an ineffective cough. Later, they may develop problems with breathing while sleeping. Eventually, they may require help with breathing during the day.<\/p>\n<p>As breathing problems worsen in stages, a planned and proactive approach to respiratory care is possible, based on timely observation, prevention, and treatment. The care team must include a doctor and therapist with skill in the delivery of non-invasive ventilation and related techniques for increasing the amount of air to enter the lungs (lung volume recruitment) as well as manual and mechanically assisted cough.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Looking after the heart \u2013 Cardiac management&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner el_class=&#8221;bg-height-01&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1654801012958{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-44.jpg?id=11738) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193862997{margin-bottom: 0px !important;}&#8221;]\n<h2>Looking after the heart \u2014 <span class=\"titre-jaune\">Cardiac management<\/span><\/h2>\n<p>Why does your child need to see a heart specialist? A cardiologist can detect and treat the deterioration of heart muscle function. Children with DMD often develop heart muscle problems (cardiomyopathy), which can cause heart rhythm problems, such as palpitations. Heart problems usually happen with the overall progression of DMD.<\/p>\n<p>As heart problems often happen silently \u2013 without the development of significant symptoms \u2013 they can be overlooked. Early detection means prompt treatment. Ensure that a cardiologist is part of your child\u2019s care team.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Looking after the gut \u2013 Gastrointestinal management&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner el_class=&#8221;bg-height-01&#8243; width=&#8221;1\/2&#8243; css=&#8221;.vc_custom_1654801771520{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-46.jpg?id=11743) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;1\/2&#8243;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193868483{margin-bottom: 0px !important;}&#8221;]\n<h2>Looking after the gut \u2014 <span class=\"titre-jaune\">Gastrointestinal management<\/span><\/h2>\n<p>You will probably consult the following specialists at various stages of DMD:<br \/>\na dietician or nutritionist, a swallowing\/speech and language therapist, and a gastroenterologist[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=&#8221;<br \/>\n&lt;h2&gt;Looking after psychological and social problems \u2013 Psychosocial care&lt;\/h2&gt;<br \/>\n&#8220;][vc_row_inner][vc_column_inner css=&#8221;.vc_custom_1654802254971{padding-right: 0px !important;padding-left: 0px !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}&#8221;][vc_column_text disable_pattern=&#8221;false&#8221; el_class=&#8221;contenu-padding&#8221; css=&#8221;.vc_custom_1654802652217{margin-bottom: 0px !important;}&#8221;]\n<h2 class=\"center\">Looking after psychological and social problems \u2013 <span class=\"titre-jaune\">Psychosocial care<\/span><\/h2>\n<p>People with DMD have a greater risk of psychosocial problems. Such as behavioural and learning disabilities. For that reason, it\u2019s important to supplement medical care with psychosocial care. Some difficulties may be due to a lack of certain psychosocial skills, such as knowing how to deal with others and judging social situations and different points of view. The physical deficits of DMD may lead to social isolation, withdrawal and reduced access to social activities. Some parents run into difficulty in having psychosocial problems recognized and adequately treated. For many, the stress caused by their child\u2019s psychosocial problems outweighs the stress of the physical aspects of DMD.<\/p>\n<p>Children with DMD often understand their disease more than their parents believe. If you think your child worries about his illness, be open and available to answer questions. Respond candidly, give age-appropriate answers, and limit answers to information that your child has requested. Open communication can be very hard, but hospital staff and family support groups can help by telling you what works for them.<\/p>\n<p>Parents of children with DMD should focus on preventing psychosocial problems and seeking help, including treatment, as soon as possible for best results.<\/p>\n<p>Not everyone with DMD has psychosocial difficulties, but families should watch for:<\/p>\n<ul class=\"liste\">\n<li>Any weaknesses in language development, comprehension, and short-term memory<\/li>\n<li>Learning disabilities<\/li>\n<li>Difficulties in making or keeping friends (social immaturity, insufficient social skills, withdrawal\/isolation)<\/li>\n<li>Anxiety<\/li>\n<li>Frequent disputes<\/li>\n<li>Mood swings<\/li>\n<\/ul>\n<p>Children with DMD have a higher risk of behavioural problems and neurological developmental disorders, including autism spectrum disorders, attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD).<\/p>\n<p>Limitations in adaptation skills may appear. A lack of flexibility or mental adaptability (resistance to change) may aggravate anxiety. Depression, frequent arguments (oppositional behaviour), and character-related problems may occur.<\/p>\n<p>The very high rate of depression among parents of children with DMD stresses the need to offer psychological support to all family members. It\u2019s important to seek help.[\/vc_column_text][mk_padding_divider size=&#8221;75&#8243;][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][\/vc_accordions][\/vc_column][\/vc_row]\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[mk_page_section vertical_align=&#8221;center&#8221; bg_image=&#8221;https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/header-agir.jpg&#8221; bg_position=&#8221;center center&#8221; bg_repeat=&#8221;no-repeat&#8221; bg_stretch=&#8221;true&#8221; enable_3d=&#8221;true&#8221; min_height=&#8221;250&#8243; full_height=&#8221;true&#8221; el_class=&#8221;section-header header-02&#8243; sidebar=&#8221;sidebar-1&#8243;][vc_column][vc_column_text disable_pattern=&#8221;false&#8221; align=&#8221;center&#8221; css=&#8221;.vc_custom_1653599250954{margin-bottom: 0px !important;}&#8221;] Management of dmd [\/vc_column_text][\/vc_column][\/mk_page_section][vc_row][vc_column][mk_padding_divider size=&#8221;25&#8243;][mk_padding_divider size=&#8221;25&#8243; visibility=&#8221;visible-sm&#8221;][vc_column_text disable_pattern=&#8221;false&#8221; align=&#8221;center&#8221; el_class=&#8221;contenu-inner-padding&#8221; css=&#8221;.vc_custom_1654193935365{margin-bottom: 0px !important;}&#8221;] What do you do after your child has been diagnosed with Duchenne? How will the disease evolve? What can you do as a parent [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-13308","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La Force | How do I access a new treatment?<\/title>\n<meta name=\"description\" content=\"Find out how you can access the new treatments available to live better with dmd.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/laforcedmd.com\/en\/quick-guige-management-of-dmd\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La Force | How do I access a new treatment?\" \/>\n<meta property=\"og:description\" content=\"Find out how you can access the new treatments available to live better with dmd.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/laforcedmd.com\/en\/quick-guige-management-of-dmd\/\" \/>\n<meta property=\"og:site_name\" content=\"La Force dmd\" \/>\n<meta property=\"article:modified_time\" content=\"2022-10-20T20:04:02+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"9 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/quick-guige-management-of-dmd\\\/\",\"url\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/quick-guige-management-of-dmd\\\/\",\"name\":\"La Force | How do I access a new treatment?\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#website\"},\"datePublished\":\"2022-05-02T14:33:26+00:00\",\"dateModified\":\"2022-10-20T20:04:02+00:00\",\"description\":\"Find out how you can access the new treatments available to live better with dmd.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/quick-guige-management-of-dmd\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/laforcedmd.com\\\/en\\\/quick-guige-management-of-dmd\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/quick-guige-management-of-dmd\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Quick guige &#8211; 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