Programa de distrofia muscular de Duchenne

Programa de distrofia muscular de Duchenne

Programa de distrofia muscular de Duchenne

The Duchenne Muscular Dystrophy (DMD) Program at Children's Health℠ is one of the most comprehensive in Texas.

Our clinic is a certified Duchenne Care Center by the Muscular Dystrophy Association and the Parent Project Muscular Dystrophy. We treat children of all ages, from diagnosis to their transition to adult care.

DMD is the most common form of muscular dystrophy and typically affects boys. It usually starts between ages 2 and 5 and affects many aspects of a child’s health, from their ability to walk to the strength of their heart and breathing muscles.

Children’s Health neuromuscular disease experts understand the specific ways that muscular dystrophy affects breathing, heart function and other aspects of health. We collaborate with specialists from pulmonology, cardiology, rehabilitation medicine, orthopedics, endocrinology and nutrition to give patients the best possible care.

We use preventive care to keep your child’s body strong and avoid complications. Our preventive approach includes devices that help support breathing to prevent respiratory illness, and heart medication that helps kids stay healthy and active.

We also prioritize normalizing everyday tasks and experiences like getting ready for school, playing with friends and getting around the community. Together, we are ready to help your child retain their strength, prepare for changes a

Dallas

214-456-2768
Fax: 214-456-6898
Suite F5400

Fax de remisión de nuevos pacientes:
214-456-6255

Para remisiones de nuevos pacientes, incluya la hoja de características demográficas del paciente, los análisis de laboratorio pertinentes, los informes de las imágenes, notas de consultorios y la información del seguro.

Solicitar una cita con códigos: Neurología

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Afecciones que tratamos

  • Miopatía de cuerpos centrales
  • Distrofia muscular congénita
  • Miastenia gravis congénita
  • DMD (distrofia muscular de Duchenne)/DMB (distrofia muscular de Becker)
  • Distrofias musculares de Emery-Dreifuss
  • DMFEH (distrofia muscular facioescapulohumeral)
  • Ataxia de Friedreich
  • DMCE (distrofia muscular de la cintura y las extremidades)
  • Enfermedad de McArdle
  • Neuropatías metabólicas
  • Trastornos mitocondriales
  • Miotonía congénita
  • Miopatía nemalínica
  • Parálisis periódica
  • Enfermedad de Pompe

Tratamientos y servicios

There is no cure for muscular dystrophy. However, some medications are able to slow muscle weakening and many physical therapies help strengthen muscles lungs, preserve mobility and independence. Our DMD team works together to design a personalized care plan for each patient that is based on:

  • The child's age
  • Overall health and medical history
  • The progression of the duchenne muscular dystrophy
  • The child’s ability to tolerate different medications, procedures and therapies
  • Expectations for the course of the condition
  • Family needs and priorities

Non-surgical care to help manage symptoms

  • Physical and occupational therapy to build strength, maintain flexibility and support everyday movements
  • Speech therapy improve communication when face muscles weaken
  • Respiratory therapy to help with breathing
  • Regular cardiac evaluations
  • Positioning aids used to help the child sit, lie or stand
  • Braces, splints and wheelchairs to prevent deformity, promote support and provide protection
  • Medicamento
  • Nutritional counseling and diet planning

Surgical care to manage complex symptoms

  • Procedures to correct scoliosis (a sideways curvature of the back bones) and joint contractures
  • Surgery to implant a pacemaker for heart problems
  • Surgery to remove cataracts
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A World-Class Pediatric Duchenne Muscular Dystrophy program

When you first come to the DMD program, your child will receive a whole-body assessment that will include physical tests, blood tests and muscle biopsies.

Children’s Health experts understand the specific ways that muscular dystrophy affects breathing, heart function and other aspects of your child’s health.

The most common programs and clinics our patients receive care from include:

También buscamos activamente nuevas y mejores formas de tratar la DMD a través de la investigación y los ensayos clínicos. La investigación continua incluye estudios para técnicas avanzadas, como la terapia génica y la tecnología de omisión de exones, que apunta a restaurar una proteína que no funciona correctamente en pacientes con DMD.

Atención conveniente y coordinada de la distrofia muscular

Generalmente, la atención de la distrofia muscular requiere que los pacientes tengan que esforzarse para coordinar varias citas en diferentes consultorios médicos. Esto puede implicar recorrer grandes distancias y faltar varios días a la escuela.

En nuestra clínica, programamos citas para que su hijo consulte a todos los médicos en una sola visita. Esta cita multidisciplinaria es más conveniente para usted y su hijo. También permite a nuestro equipo trabajar en conjunto y avanzar rápidamente con la atención que su hijo necesita.

Living with Pediatric Duchenne Muscular Dystrophy

Children with duchenne muscular dystrophy will experience muscle weakness throughout life. Eventually their muscles will start to break down causing them to need progressively more acute care and support.

DMD patients develop enlarged calf muscles, while their thigh muscles become thin. Their tongue and forearm muscles may also become enlarged. Progressive joint stiffening will reduce their flexibility and limit their ability to move independently.

Many children will develop severe spinal curvature (scoliosis).

Pulmonary complications are also common due to weakness in chest and throat muscles. When this happens, children have difficulty coughing and swallowing, which can cause frequent lung infections. Eventually, the heart muscles will begin to break down, causing cardiomyopathy.

Apoyo para el niño y la familia

Tomamos medidas adicionales para ayudar a los niños a vivir bien con un diagnóstico de DMD; y apoyamos a las familias a lo largo del camino de la atención. Nos tomamos el tiempo para informar a las familias sobre la enfermedad y cómo esta afección puede incidir en sus vidas. Estamos disponibles para ayudar con todos los aspectos de la vida con DMD, desde trabajar con las escuelas hasta conseguir sillas de ruedas y realizar otros cambios para lograr la accesibilidad.

We also aim to have each child to see themselves as capable as every other child. Our team will integrate your child’s wants and needs into their treatment and use those goals as motivation to pursue new milestones. We have a number of resources to participate in adaptive sports and other activities.

Coordinated care for complex needs

Some children may eventually need surgery for scoliosis, cataracts or heart problems. Your child’s DMD team will work closely with the inpatient care team to plan their recovery and new therapeutic needs.

All DMD patients will eventually need extensive heart and lung care. A cough-assist machine will help your child get a deeper breath and clear their airway. Many Duchenne patients eventually need a machine to help with breathing (bilevel positive airway pressure, Bi-PAP). Medicines can help the heart move blood around the body and some will need a pacemaker.

Partnering with other clinics

Some families find regular outpatient care close to their home or school. We can partner with specialists in your area and can continue to provide specialty care as needed.

Conozca a nuestro equipo de atención

At Children’s Health, our muscular dystrophy team includes experts in neurology, cardiology, pulmonology, gastroenterology and physical therapy. Our specialists work together and create a care plan that’s customized to your child’s specific needs.

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