Introduction

Childhood neuromuscular diseases refer to a rare group of conditions caused by genetic mutations or inherited genes that lead to progressive muscle weakness and atrophy in children. While neuromuscular diseases are mainly characterized by progressive muscle weakness and motor function impairment, their impact also includes systemic diseases throughout the body, causing extreme physical and mental burden for patients and their families, as well as increased social care costs. The following are the main medical issues that most patients may face: neurological and muscular aspects, orthopedic aspects, rehabilitation aspects, respiratory and sleep aspects, cardiac aspects, gastrointestinal and nutritional aspects, endocrine aspects, learning aspects, psychological aspects, dental aspects, related medical resource aspects, palliative care and end-of-life care issues.

In addition to the involvement of systemic organ problems in the disease itself, each type of neuromuscular disease has a different degree of impact on different organs, as well as varying effects among different cases. At the same time, problems in different organ systems often have a mutual influence and interdependence, which are closely related and inseparable. Therefore, caring for this group of patients requires personalized, patient-centered integrated care. Comprehensive care and proper health education can not only delay disease progression but also significantly reduce patient complications, thereby improving the quality of life for patients and enabling them to bravely face society and live a meaningful life.

In order to improve the care of childhood neuromuscular diseases in Taiwan and benefit more patients and their families, the Department of Pediatrics at National Taiwan University Hospital established the NTUCH Neuromuscular Disease Multidisciplinary Team and Integrated Care Clinics in September 2011, providing neuromuscular disease patients with more comprehensive and appropriate medical care. Over the past decade, our team has gradually grown stronger, successfully integrating senior pediatric neurologists, pediatric rehabilitation physicians, pediatric orthopedic physicians, pediatric thoracic physicians, pediatric cardiologists, anesthesiologists, pediatric gastroenterologists, pediatric endocrinologists, genetic medicine department physicians, pediatric otolaryngologists, special dental physicians, nutritionists, clinical psychologists, physiotherapists, speech therapists, and social workers, among others, into a medical team dedicated to neuromuscular disease children. This dedicated integrated medical team is an important innovation and breakthrough in Taiwan, and patients only need to pay a registration fee and partial cost to receive comprehensive care. In addition to simplifying the complicated process and saving time for patients, ensuring consistent and comprehensive medical quality, and reducing the burden of multiple visits for pediatric patients, instant clinical diagnosis and medical resources can also be obtained, further reducing the probability of hospitalization and lowering the burden of health insurance. At the same time, it also enhances close communication and sharing of expertise among professionals in the field of pediatric medical care.

Medical Services

The "Neuromuscular Disease Integrated Care Clinics" is currently held on the Monday morning of the 2nd and 5th weeks of each month. The clinic operates on an appointment-only basis. If you have not been seen at our hospital before or have any inquiries or suggestions regarding this clinic, you can consult with Dr. Wen-Chin Weng from the Division of Pediatric Neurology, Dr. Jeng-Yi Shieh from the Department of Physical Medicine and Rehabilitation, or Dr. Frank Leigh Lu from the Division of Pediatric Pulmonary, and they will refer you to the integrated clinic. You can also contact us by phone at 02-23123456 ext. 270401. If you have any related surgical or hospitalization issues, we also provide integrated inpatient care.

Neuromuscular Disease Integrated Care Clinics

Time

Every Monday morning of the 2nd and 5th week of each month

Location

Clinic 25, 33-37 and Clinic 38-39 of National Taiwan University Children’s Hospital

Phone number

(02) 23123456 ext. 270401

Members