Perthes for Parents
Where to start
One of the first steps is finding a medical-surgical team that fits you and your child. Some things to consider include geographic location, insurance coverage, a provider’s experience treating Perthes disease, access to and collaboration with a healthcare team. Each Surgeon is uniquely qualified in treating Perthes and has a different experience thus treatments differ slightly. An important consideration in selecting a surgeon is how his or her approach aligns with your values.
Join our groups to find parents just like you. There are intense emotions that accompany a Perthes diagnosis. While a child might feel alienated, worried, or depressed, you, the parent or primary caregiver can also experience these same symptoms as well as feelings of confusion and guilt. But it’s not all bad! You’ll also find parents here who share amazing stories of hope and healing as well as adults who were diagnosed with Perthes as children.
Suddenly, words like acetabulum, femoral head, osteoclast, internal fixation, Petrie cast, and of course pediatric orthopedic surgeon are becoming part of your daily life. Your days and weeks are measured in terms of containment, range of motion (ROM), fragmentation pattern, and lateral pillar classification. Perthes disease has a language of its own! We’ve assembled a growing list of common terms for you as you navigate Perthes. And our glossary is printer friendly!
A common concern of parents and caregivers in the Perthes community is “how to make the most of the time with the surgeon or specialist.” Many families travel for these appointments which may happen quarterly. In these visits are packed with tests, labs, questions, suggestions. The moments with a specialist are precious. We’ve compiled a few tips for making the most of your appointments including taking a friend to the appointment to take notes and a list of questions to ask the surgeon. Feel free to print out our list to take to the appointment!
In hindsight, the symptoms were there for several years. We went to urgent care, pediatricians, several specialists and had countless tests before finally hearing the diagnosis Perthes. I thought that would bring answers, but it just brought more questions: Was I doing the best thing? Could I do more? Why did it take this long to get diagnosed?
Perthes disease brings about more questions than answers and is often as emotionally trying on parents as physically and emotionally trying on children. Feelings of being overwhelmed, frustrated, even feelings of guilt are often expressed by parents and caregivers. You aren’t alone. It is a journey. LCPF hopes to provide you with a road map to the resources your family needs.
The Parents’ Guide to Perthes is a reassuring guide for parents learning how to handle their child’s condition. Written in everyday language, this book explains the stages of Perthes, including how the age of the child affects the course of the disease. Illustrations and x-ray examples show the effects of Perthes in the hip joint for different children. The book describes how doctors diagnose Perthes and develop a treatment plan. It also includes first-person accounts from parents and children about their Perthes experiences
Legg Calve-Perthes Disease (AAOS Monograph Series) describes how doctors develop a treatment plan and includes first-person accounts from parents and children about their Perthes experiences. Dr Herring, one of the foremost experts on Perthes disease, offers new insights into its etiology, diagnosis and treatment options.
Perthes Kids Foundation is a global community dedicated to fighting Perthes disease. Founded by Earl Cole, who was diagnosed with LCPD as a child, the foundation sponsors Camp Perthes. Camp Perthes is an annual camp for children diagnosed with LCPD, with multiple locations around the world!
OrthoKids is a site operated by the Pediatric Orthopaedic Society of North America and is a great reference for children that is both interactive and informative. While not specific to Perthes, it has a whole lot more offer to offer the pediatric patient from a kid friendly anatomy lesson to a “dear doctor” section. Children can ease anxiety about upcoming visits with an Orthopaedic Surgeon and preview potential treatments.
The American Academy of Orthopaedic Surgeons was founded in 1933 and serves as the preeminent provider of musculoskeletal education to orthopaedic surgeons worldwide. AAOS provides a searchable database to help in the search for a qualified specialist.
International Perthes Study Group: Started in March of 2012 by pediatric orthopaedic surgeons and researchers from all over US and other countries who felt the need to improve the care of patients with Perthes disease. The IPSG mission is to advance knowledge of Perthes disease and to disseminate objective, evidence-based information to the patients and their families and to the medical community.
The National Institutes of Health Genetic and Rare Diseases Information Center offers very detailed epidemiological information as well as emerging theories and research initiatives. The site is regularly reviewed and updated.
The Mayo Clinic has a long-standing reputation for medical education of physicians, staff, patients and families alike. Research and quality patient care for the “whole patient” are also directives of the Mayo Clinic. Their site provides a medical overview of Perthes as well as links to specialists.