Keeping Families at the Center of Health Care
A Child’s Introduction to Understanding PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci) is aimed at helping parents explain to children this complex autoimmune disorder that can greatly affect a child’s mental and physical health. It explains why they feel the way they do and offer solutions to manage their feelings and behavior. It is… More A Child’s Introduction to Understanding PANDAS
Abby is a ten-year old girl who has juvenile arthritis and chronic recurrent multifocal osteomyelitis. From taking medicine to routine doctor appointments, Abby shares how her life is affected by arthritis. From good days to bad days, Abby lets other kids know that they are not alone in this diagnosis.
Co authored by a woman who lives with Alopecia Areata, this book provides a wealth of information, and a healthy dose of humor, about coping with this condition.
Created by the Ehlers-Danlos National Foundation, this guide gives an overview of Ehlers-Danlos, what medical situations may be encountered in school, steps for academic success and considerations for 504 plans. The Parents section includes tips on advocating for your child. Also available for download – An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos… More An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos Child
Ten year old Anya wears a wig due to Alopecia. This is as much as story of friendship between Anya and Keely, who wants to help Anya and learns to stand up to her other friends, as it is of Anya’s coming to terms with her hair loss. (ages 8-12)
This book has been written jointly by nine–year-old Bethany and her mum Julie. It highlights the devastating effect that Juvenile Idiopathic Arthritis had on Bethany’s life. In all, 26 of her joints were affected-from the jaw to the ankle. After a traumatic first year Julie could take no more of Bethany’s plight when given the… More Behind My Smile
This book was written for families, children, and tweens that find themselves in a position of understanding and explaining, in basic terms, Ehlers-Danlos Syndrome and the issues associated with it. It was thoughtfully developed by bone and connective tissue disorder expert Dr. Brad T Tinkle and his award-winning children’s book author wife, Laurren Darr to… More Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A Story of One Tween’s Diagnosis of Ehlers-Danlos Syndrome / Joint Hypermobility
“This book is the result of seven years of fear, uncertainty, and hardship as a family has attempted to cope with a child’s unexpected life-threatening illness. This story differs from that of many other families coping with childhood illness in that we as parents already had intimate “insider” knowledge of serious illness. I was a… More Both Sides Of The White Coat: An Insider’s Perspectives On The Critically Ill Child
Lexie has a chronic health condition, and spends a lot of time having test and going to the doctor. She knows how scary it can be sometimes. “be brave and know that you are not alone” is her message for other children.
An empathetic and practical guidebook relevant to the families of chronically and severely ill children and to those who care for them. Observes and evaluates from the inside, with intimacy, understanding and compassion. Weaves together brief vignettes to teach.
This book helps to explain to children why it is important to take their medicine. Ages 2 and up.
With the heart and understanding of moms who are living it themselves, Elizabeth Hoekstra and Mary Bradford offer encouragement and help for fellow parents of “chronic kids.” If you were blessed with such a child, you are not alone. This is a very faith based book that addresses specific issues such as dealing with emotions,… More Chronic Kids Constant Hope: Help And Encouragement For Parents Of Children With Chronic Conditions
This helpful handbook provides comprehensive and compassionate coverage of all aspects of tube feeding and nutrition via tube, including: The different types of enteral feeding tubes, their placement, use and care, with loads of useful tips and tricks to make living with a feeding tube easy as can be. Tube nutrition, with sections on commercially… More Complete Tubefeeding
Complex regional pain syndrome is rare, but can be very disabling. Early management can help. Written for teens, this book will help teens with CRPS to take part in decisions that affect their body and their health.
This book reveals what parents can do to alleviate their child’s pain on a daily basis. Based on more than 30 years study, Dr. Zeltzer offers ways to take control of the pain and ultimately become pain-free. She explains how to tell if the pain has become chronic, soothe the nervous system, reactivate the body’s… More Conquering Your Child’s Chronic Pain: A Pediatrician’s Guide for Reclaiming a Normal Childhood
Crohn’s Disease is a chronic and incurable gastrointestinal inflammatory illness of unknown origins. With this book, discover how to maximize your relationships with medical professionals and make informed decisions about medication and existing surgical options while you deal with Crohnis Disease. Discover strategies for coping with the daily physical affects of the illness, including how… More Coping With Crohn’s Disease
This book encourages parents with multiple sclerosis to begin the conversation about the diagnosis and ongoing implications of MS with young children. This 16-page book is geared for children ages three to seven. You can borrow from our library or download – Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s Multiple… More Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s Multiple Sclerosis
When a child is seriously or chronically ill, parents, friends, and other supportive loved ones want to help. This beautiful guided journal for kids and teens with health challenges offers young people the empowerment they need to take an active role in their emotional health by working through dozens of relevant and meaningful exercises
Profiles the lives of uniquely challenged teens as they work hard to make sense of the world and their places in it. The questions they pose are frank and courageous, many include street language that teens can identify with and readily understand. The issues front and center in their lives are addressed, such as family, doctors… More Easy For You To Say: Q & A’s For Teens Living With Chronic Illness Or Disability
Ben has been having a hard time. Ever since he can remember, his two sisters and his parents eat whatever they want, whenever they want, and they seem to be fine. But not Ben. When he eats, he often has stomach aches, experiences gagging, and worse yet, he vomits. It seems to him that eating… More Eating Isn’t Always Easy: Ben’s Story about his Eosinophilic Esophagitis