When Your Child Has Lyme Disease: A Parent's Survival Guide
by Sandra K. Berenbaum, LCSW, BCD, and Dorothy Kupcha Leland
Lyme disease can cause puzzling symptoms in children, including pain, fatigue, gastrointestinal upsets, learning disabilities, behavioral issues and psychiatric problems. The illness can be hard to diagnose, however, and Lyme-related controversies in the medical world complicate the picture. Parents seeking help for their suffering children often don't know where to turn.
When Your Child Has Lyme Disease: A Parent's Survival Guide is filled with information parents need to know about Lyme, as well as practical strategies based on the authors' personal and professional experiences. It offers guidance on finding the right medical care, coping with treatment, developing effective boundaries with others who don't understand what your family is going through, advocating for your child's educational needs and managing day-to-day family life.
Connecticut psychotherapist Sandra K. Berenbaum has counseled Lyme patients and their families for over 20 years. Co-author Dorothy Kupcha Leland, is a parent and national activist who writes the blog Touched by Lyme. Foreword by Richard Horowitz MD, author of Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Illness.
Except From Book
"The psychiatrist, who also doesn’t know much about Lyme disease, presumes that these symptoms are caused by a mental illness and prescribes psychiatric medication. With undiagnosed Lyme disease, those drugs may have a paradoxical effect or none at all. Then, the psychiatrist becomes convinced that the child is mentally ill. He may even decide it’s severe enough for him to be admitted to a psychiatric hospital. In the hospital, this child with undiagnosed Lyme disease will be “treated,” perhaps with more psychotropic medications, along with individual and group therapy. All of this treatment is focused on the psychiatric illness that the doctors have presumed this child certainly has."
"An invaluable resource....This remarkable book is both a practical guide and emotional touchstone....If you have a child with Lyme, no matter where you and your family are on this journey, this guide can help."
John McCormick, The Huffington Post
"I wish I’d had this smart, fearless, insightful handbook on my own journey through the Lyme thicket. From negotiating with schools to handling doctors and relatives to tending a sick child’s physical and psychic pain, Sandra K. Berenbaum and Dorothy Kupcha Leland have covered it all.... The best advice ever – your copy of this book will end up dog-eared with highlights and margin notes, and you’ll carry it everywhere."
Author, Cure Unknown: Inside the Lyme Epidemic
"This is the only book out there that describes in-depth the challenges of having a child, or children, with Lyme disease. It highlights the psycho-social, emotional, relational, political and financial issues that go along with having a child with Lyme, as well as what it's like to be a child with Lyme. The authors also paint a solid, informative picture about what Lyme disease is, as well as the difficulties with diagnosing and treating it. Perhaps even more importantly, they share about the lack of education, societal awareness and practical help available to families with Lyme, and provide real solutions that caregivers can apply to navigate these challenges."
Author, Insights into Lyme Disease Treatment and Beyond Lyme Disease
About authors Sandra Berenbaum and Dorothy Kupcha Leland
Sandra Berenbaum (right) and Dorothy Kupcha Leland (left) have first-hand experience with the burdens faced by families coping with tick-borne illness. "Lyme disease affects the whole family, not just the person who is ill," they say. The authors hope this book will help parents and their children find a path to healing.
Sandra Berenbaum, LCSW, BCD, has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. In private practice for more than 25 years, Berenbaum is also Children’s and Mental Health Editor of The Lyme Times, is an advisor to Lyme Connection, and is affiliated with the Lyme Disease Association. She is a member of the International Lyme and Associated Diseases Society, the Council of Parent Attorneys and Advocates, and the National Association of Social Workers. Her presentations at both national and regional conferences have helped educate practitioners about how to work with patients who have Lyme disease. Her website is www.lymefamilies.com. She lives in Connecticut.
Dorothy Kupcha Leland, has a daughter with Lyme disease and is vice-president of LymeDisease.org, a national advocacy group. She has organized patient conferences, testified before the California State Legislature and the state health department, and written Lyme-related articles for a variety of publications. Co-founder of a Lyme support group in Sacramento, California, she also gives tick bite prevention talks and writes the widely read blog Touched by Lyme.