Survival Guide for Parents of Children with Lyme disease

Share Article

New book from Lyme Literate Press offers practical strategies for coping with Lyme disease in children, an illness that can be shattering to family life.

Cover art

Book cover

This illness can be shattering to family life....It's overwhelming. Parents need advice and support.

The CDC estimates that more than 300,000 people in the US contract Lyme disease each year. Twenty-five percent of them are age 5 to 14. That leaves a lot of parents scrambling to get help for their suffering children.

Lyme disease can cause puzzling symptoms in children, including pain, fatigue, digestive 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 even more. Parents often don’t know where to turn for assistance.

“This illness can be shattering to family life,” says Connecticut psychotherapist Sandy Berenbaum, LCSW, co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide (Lyme Literate Press, September 2015). “Mothers and fathers must care for severely ill children and search for the right treatment, while earning a living and juggling other family obligations. It's overwhelming. Parents need advice and support."

According to Berenbaum, finding appropriate medical care for their child is only part of the story. Parents also need guidance on coping with treatment (which can be highly debilitating), developing effective boundaries with people who don’t understand what the family is going through, advocating for the child’s educational needs and managing everyday family life.

“Many may also need the help of a mental health professional who is knowledgeable about the illness and the complex personal and family issues that can arise from it,” she says.

Berenbaum has counseled Lyme patients and their families for over 20 years, first in her practice in Dutchess County, New York, and for the past 11 years, in Connecticut. She has developed “responsive psychotherapy,” a unique approach to helping families overcome the challenges of Lyme disease.

Her co-author, Dorothy Kupcha Leland, brings the parent’s perspective to the book. In 2005, Leland’s then-13-year-old daughter became seriously disabled by what turned out to be Lyme disease. But, she says, it took doctors a long time to figure that out, allowing the illness to burrow deep into the body and became extremely difficult to root out.

Equally hard was dealing with the emotional isolation a family can experience at such a time, Leland says. "We felt very alone. But, in fact, we were part of a growing yet invisible group--families grappling with a disease that is largely ignored by the medical establishment."

Leland, who lives in northern California, is now a national activist with the patient advocacy group LymeDisease.org and writes the blog Touched by Lyme.

When Your Child Has Lyme Disease includes an extensive appendix, listing resources for financial assistance, advocacy and support groups, educational websites, and related books and videos.

Dr. Richard Horowitz, an internationally recognized Lyme expert from Hyde Park, NY, has written a foreword to the book. “Children with Lyme present specific challenges,” he states. ”Skillful emotional support and guidance, as well as an understanding of how to meet educational needs and manage day-to-day family life is essential in Lyme. We finally have that guidance in this book.”

When Your Child Has Lyme Disease is available through Amazon.com and other online retailers, in both paperback and e-book formats. Paperback: 978-0-9962243-0-7 $19.95; e-book: 978-0-9962243-1-4 $9.99. Available to the book trade via Ingram.

For more information, see http://www.lymeliteratepress.com.

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Dorothy Leland
@dorothyleland
since: 05/2014
Follow >
Visit website