Cerebral Palsy. The HELP Guide To. Second Edition. Authors Nadire BERKER Selim YALÇIN. Consultants Leon ROOT Lynn STAHELI - PDF

The HELP Guide To Cerebral Palsy Second Edition Authors Nadire BERKER Selim YALÇIN Contents...1 Preface...4 Global HELP...4 Contributors...5 Foreword...6 Introduction General concepts...7 Classification...12

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The HELP Guide To Cerebral Palsy Second Edition Authors Nadire BERKER Selim YALÇIN Contents...1 Preface...4 Global HELP...4 Contributors...5 Foreword...6 Introduction General concepts...7 Classification...12 Associated problems...14 Physical examination & making the diagnosis...17 Gait...28 Prognosis & goals of management...34 Management Principles...38 Rehabilitation & physiotherapy...40 Bracing...49 Mobility aids & assistive devices...54 Orthopaedic surgery...60 Anesthesia & chronic pain management...69 Spasticity Pathophysiology...74 Essentials of treatment...76 Oral medications...78 Botulinum toxin & neuromuscular blocks...79 Intrathecal baclofen Selective dorsal rhizotomy...90 Types of CP Hemiplegia...91 Diplegia...99 Quadriplegia Dyskinesia Special situations The neglected child The adult Management with limited resources Appendix For families Resources Consultants Leon ROOT Lynn STAHELI Contributors Antigone PAPAVASSILIOU Dhiren GANJWALA Garen KOLOYAN Zeynep ETI The HELP Guide To Cerebral Palsy Second Edition Authors Nadire BERKER Selim YALÇIN Consultants Leon ROOT Lynn STAHELI Contributors Antigone PAPAVASSILIOU Dhiren GANJWALA Garen KOLOYAN Zeynep ETI 4 Preface Preface Drs. Nadire Berker and Selim Yalçın created a second edition of their successful publication, The Help Guide to Cerebral Palsy. This publication is authoritative, comprehensive, extensively illustrated, colorful and engaging. The need for this publication is enormous, as CP is common throughout the world and no affordable management guide has been available to date. The authors are highly qualified to produce this publication. Dr. Nadire Berker was Professor of Rehabilitation Medicine at the Marmara School of Medicine in Istanbul, Turkey. She has extensive experience in managing the full spectrum of CP from childhood to adult life. Dr. Berker continues a family tradition in rehabilitation medicine that was started in the 1920s by her grandfather who established the specialty in Turkey, and was continued by her mother who headed the department for many years. Dr. Selim Yalcin is Professor of Orthopedics at the same university. Dr. Yalcin is an accomplished clinician who specializes in pediatric orthopedics. He has broad clinical experience, and is a prolific author and producer. The authors have produced numerous books and videos on cerebral palsy, spina bifida, gait analysis, clubfoot, the use of ultrasonography in orthopedic management, and historical aspects of medicine. They practice medicine in Istanbul, a city positioned at the crossroads of the world. The economy of Turkey is midway in the economic spectrum of nations of the world. This geography and economic environment provides the authors with an ideal vantage point from which to make management recommendations that are both practical and relevant for most societies of the world. The authors recommend a balanced approach to management. This approach balances the medical, social, psychological and educational needs of the child and family. The humanitarian, whole-child approach is evident throughout the publication. Global HELP Organization is pleased to support The HELP Guide to Cerebral Palsy. The book is available through our web site in pdf format; for non-commercial use, it may be downloaded without charge. Printed copies are available for only the cost of printing and mailing. Please visit our web site at for details..lynn Staheli, MD, 2010 Founder and Director Global HELP Organization Seattle, WA, USA EASTERN MEDITERRANEAN CEREBRAL PALSY & DEVELOPMENTAL MEDICINE CONGRESS The Story of the EMCPDM The authors of this book were among the group of dedicated American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) members who felt the necessity to improve the quality of health care services urgently needed by children with neuromuscular diseases in the Middle East. After long discussions on what to do, they planned to start meetings to provide a regional platform for educating physicians and therapists. Drs. Berker and Yalçın shouldered the responsibility of the first meeting in Istanbul, performing the secretarial work, graphic design, and fund raising by themselves. With seed money donated by the AACPDM, they organized a large meeting at which recent scientific advances in the area of childhood neuromuscular disability and CP were the main topics. The first Eastern Mediterranean Cerebral Palsy and Developmental Medicine meeting was held in 2002 in Istanbul. More than 300 participants from 18 countries were in attendance. For the 3-day congress in the most modern convention center in Turkey, registration fees were kept to a minimum of $100 and free accommodation was provided to participants from countries with economical problems. The faculty included renowned physicians and physiotherapists from the United States, Europe and the Middle East, most of whom volunteered to participate and donated their time and efforts. The success of the first meeting led to the next in 2004 in Greece, which also was very successful. Biannual meetings continued in 2006 in Warsaw, Poland; in 2008 in Eilat, Israel and in 2010 Beirut, Lebanon. The organization today covers Eastern Europe as well as the Middle East, and therefore is called the EEMCPDM (Eastern European and Mediterranean Group of Cerebral Palsy and Developmental Medicine). Over a period of ten years, it has evolved into a wonderful opportunity for the physicians and therapists of the region to get together, share knowledge and experience, and discuss the latest developments. The group is looking forward to future meetings with proud anticipation. The Global HELP organization provides free healthcare information to developing countries and helping to make medical knowledge accessible worldwide. See or Contributors 5 Dear Reader, Years of treating children with cerebral palsy (CP) has shown us that a worldwide need exists for a concise, illustrated book to guide health professionals regarding this difficult problem. This book is an attempt to fulfill that need. The Guide is intended for use by physicians, residents, medical students and allied health professionals who treat children with CP. We focus on the latest concepts in the treatment of musculoskeletal problems and describe the associated impairments, providing suggestions for further reading. The chapters on total body involvement, diplegia, hemiplegia and dyskinesia include the most common treatments applied for these patients. Note that problems described in one section may occur in other types of CP. We present the most frequently used and accepted treatment methods with scientifically proved efficacy and include references at the end of each chapter. The illustrations and photographs of patients are from ours and Dr. Leon Root s archives unless stated otherwise. We would like to thank our patients and their families for sharing their problems with us and also for allowing us to use their pictures. We are indebted to Ms. Dory Kelly for helping us with text editing of the first edition. Treatment of the child with CP is difficult, often frustrating and sometimes depressing. This is even more pronounced in countries with limited resources for the disabled. We try to provide information on how to proceed in places where resources are limited. An interdisciplinary management approach is the only means to integrate children with CP with the society and lessen the impact of the problem. We have learned with great pleasure that ten thousands of readers benefited from our work and used this guidebook in the treatment of unfortunate millions of patients with CP worldwide. Therefore we thought it necessary to update the guide with knowledge and expertise of the last five years. We hope it will be of valuable use to all persons involved in taking care of children with cerebral palsy. Nadire Berker and Selim Yalçın Istanbul, Turkey Graphic design: Selim Yalçın and Nadire Berker Cover design: Selim Yalçın and Tevfik Pekcanlı Prepress: Rotamat Press Co. Ltd. Printed at: Printed at: Merrill Corporation, Washington, USA, 2010 ISBN: No: 8 in Pediatric Orthopedics & Rehabilitation Series prepared by Drs. Berker & Yalçın Selim Yalçın & Nadire Berker Every effort has been made to confirm the accuracy of the presented information. The authors and publisher are not responsible for errors of omission or for any consequences from the application of the information in this book and make no warranty, expressed or implied, with respect to the currency, completeness, or accuracy of the contents of this publication. Application of this information in a particular situation remains the professional responsibility of the practitioner. Care has been taken to reach all copyright holders. Authors Nadire Berker, MD Dr. Berker has treated disabled children for over 15 years. She has pioneered the application of modern methods in pediatric rehabilitation, lectured extensively, and coauthored many books in Turkish on various subjects of childhood disability. Selim Yalçın, MD Dr. Yalçın is a prominent Turkish pediatric orthopaedic surgeon with a chief interest in developmental disorders and the pediatric spine. He loves to teach and has authored many educational books, organized meetings, created short movies and web sites. Leon Root, MD Dr. Root is one of the leading names in cerebral palsy orthopaedic surgery worldwide. A former president of the AACPDM, he has dedicated his career to cerebral palsy, given many lectures and authored more than 100 articles on the subject. Lynn Staheli, MD Dr. Staheli is one of the most prominent names in pediatric orthopaedics. He is the founder and chief editor of the Journal of Pediatric Orthopaedics, author of six books and a wizard of desktop publishing. He founded the Global HELP organization to create affordable medical textbooks worldwide. Contributors Lana Staheli, Ph D Lana Staheli, PhD is a certified counselor, marriage therapist, and consultant on interpersonal relationships and life strategies. She authored several relationship books. Lana is co-founder and vice-president of Global HELP. Zeynep Eti, MD Dr. Eti is head of the department of Algology in Marmara University School of Medicine. She has dedicated part of her work to pediatric anesthesiology and algology. Dhiren Ganjwala, MD Dr. Ganjwala is a pediatric orthopaedic surgeon form India. Teaching is his passion and he conducts workshops and deliver lectures at various institutions. He has published and edited many books on variety of topics for doctors, residents and patient education. Garen Koloyan, MD Dr. Koloyan is a pediatric orthopaedic surgeon from Yerevan, Armenia. He has been one of the creators of the EMCPDM and has done pioneer work for disabled children of Armenia and Georgia. Antigone Papavassiliou, MD Dr Papavassiliou is the director of Pediatric Neurology at the Pendeli Children s Hospital in Athens, Greece. She has been treating children and adolescents with CP for many years and has devoted a lot of time in teaching physicians and therapists. She has co-authored two medical textbooks on CP and many others for patient education in Greek. Idil Çilingiroğlu Ms. Çilingiroğlu is an architect who devoted her time and talent to draw all the illustrations in the section for families. 6 Foreword Foreword Cerebral palsy (CP) is the most common chronic disability of childhood today. It is ubiqitious and it occurs all around the world. In developed nations, the incidence is about 1 to2 per 1000 births. In spite of improved obstetrical and perinatal care, CP remains with us. As a result of injury to the brain, these children have motor defects which will affect them for their entire lifetime. Treatment often starts when they are infants, and continues throughout their life, even into adulthood. The problems involved are complex; not only do these children have problems of mobility, but they can also have seizure disorders, gastrointestinal system problems, learning and perceptual difficulties, visual problems, hearing problems, and growth deficiency. In spite of all these numerous difficulties, cerebral palsied children can be helped. What the authors attempt in this book is to divide information for physicians, therapists or other paramedical personnel who are interested and will be treating and taking care of these children for their lifetime. They present the basic understanding of what CP is and the fact that it takes a team to treat them. The child and his parents become the focus of treatment because you cannot treat the child without involving the parents as well. The team has to consist of the physician who will be the captain of the team. That physician can be a pediatrician, orthopaedic surgeon, physiatrist or even a neurologist, but they must take overall control of the child and make sure that all parameters of care are attended to. The team has to also include the occupational therapist, the speech therapist, the physical therapist, teachers and social workers. Dr. Wallace Salter of Toronto, Canada is fond of saying that after you operate on the child with CP, he still has CP. This may seem discouraging because we cannot cure the CP with our present knowledge, but we can make life better for these children, and that is important. Even small degrees of improvement makes a great difference. Getting a child to walk, be it in crutches, in braces or with a walker, is much better than having him in a wheelchair. Having a child be able to live in a wheelchair, as is true for children with total body involvement, is much better than having him be on a stretcher or in a bed for the rest of his life. These are important things to consider. The authors have carefully defined the types of CP, the prognosis of CP, therapies that are at present available, the surgical indications and most important of all, the pre and postoperative care that these children must have. They write in a very clear and concise way which provides a ready reference for the interested reader in treating these children. In my own experience, I have found that working with the cerebral palsied children and their families has been the most rewarding aspect of my medical career. The children and families are deeply grateful to you for whatever you can offer them and particularly, they respond to the fact that you care. And it s with your caring and your ability to help that makes a difference. Leon Root, MD Orthopaedic Surgeon Hospital for Special Surgery New York, February 2005 Dedication We would like to thank Our mothers and fathers, for their guidance and inspiration. Our children, for their compassion towards those less fortunate than themselves. Asaf Yalçın Sabahat Yalçın Ender Berker Mustafa Berker Deniz Yalçın Deniz Özaras Güneş Yalçın General Concepts 7 General Concepts Definition Cerebral Palsy (CP) is a disorder of movement and posture that appears during infancy or early childhood. It is caused by nonprogressive damage to the brain before, during, or shortly after birth. CP is not a single disease but a name given to a wide variety of static neuromotor impairment syndromes occurring secondary to a lesion in the developing brain [A]. The damage to the brain is permanent and cannot be cured but the consequences can be minimized [B]. Progressive musculoskeletal pathology occurs in most affected children. The lesion in the brain may occur during the prenatal, perinatal, or postnatal periods [C]. Any nonprogressive central nervous system (CNS) injury occurring during the first 2 years of life is considered to be CP. In addition to movement and balance disorders, patients might experience other manifestations of cerebral dysfunction [D]. CP was first described by the English physician Sir Francis William Little [E] in 1861 and was known as Little s disease for a long time. Little thought that this condition was caused by neonatal asphyxia [F]. Later, Sigmund Freud [G] and other scientists challenged Little s idea and proposed that a variety of insults during pregnancy could damage the developing brain. Today, it is accepted that only approximately 10% of cases of CP can be attributed to neonatal asphyxia. The majority occur during the prenatal period, and in most of the cases, a specific cause cannot be identified. Epidemiology CP is the most common cause of childhood disability in Western societies. The incidence is 2-2.5/1000 live births. Some affected children do not survive and the prevalence varies between 1-5/1000 babies in different countries. It was previously thought that improvements in perinatal and obstetric care would decrease the incidence of CP. However, the incidence has not declined and the overall prevalence increased during the 1980s and 1990s. This is explained by increased survival of premature and very-lowbirth-weight infants and by a rise in the number of multiple births. Even at centers where optimal conditions exist for perinatal care and birth asphyxia is relatively uncommon, the incidence of CP in term babies has remained the same. This has led researchers to consider unknown prenatal causative factors. Etiology The etiology can be identified only in 50% of the cases. Certain factors in the history of the child increase the risk of CP. The incidence of CP among babies who have one or more of these risk factors is higher than among the normal population. The clinician should therefore be alerted to the possibility of the presence of CP in a patient with these factors. A The brain lesion cannot be cured but it does not get worse either. Prenatal period Perinatal period Postnatal period In 1861 William Little described a paralytic condition of children that is recognizable as spastic diplegia. Time of brain injury Conception to the onset of labor 28 weeks intrauterine to 7 days postnatal First two years of life Manifestations of cerebral palsy D Neurological Associated problems Muscle weakness Intellectual impairment Abnormal muscle tone Epilepsy Balance problems Visual problems Loss of selective control Hearing loss Pathological reflexes Speech and communication problems Loss of sensation Swallowing difficulty Musculoskeletal Feeding difficulty, failure to thrive Contractures Respiratory problems Deformities Incontinence E F B C In his paper, Dr. Little showed a child with adductor spasm, crouch gait and intoeing. G Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems. Rosenbaum et al, 2007 CP has been defined as a non progressive injury to the immature brain leading to motor dysfunction. Although the lesion is not progressive, the clinical manfestations change over time (Mercer Rang). Sigmund Freud challenged Little s opinion on the association between CP and birth trauma. 8 General Concepts Risk factors Prenatal Prematurity (gestational age less than 36 weeks) Low birth weight (less than 2500 g) Maternal epilepsy Hyperthyroidism Infections (TORCH) Bleeding in the third trimester Incompetent cervix Severe toxemia, eclampsia Hyperthyroidism Drug abuse Trauma Multiple pregnancies Placental insufficiency Perinatal Prolonged and difficult labor Premature rupture of membranes Presentation anomalies Vaginal bleeding at the time of admission for labor Bradycardia Hypoxia Postnatal (0-2 years) CNS infection (encephalitis, meningitis) Hypoxia Seizures Coagulopathies Neonatal hyperbilirubinemia Head trauma B A C Risk factors Risk factors associated with CP are grouped into prenatal, perinatal, and postnatal factors [A]. Prematurity and low birth weight are the two most important risk factors
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