When Your Child Has Lyme Disease: A Parent's Survival Guide
By Sandra K. Berenbaum, LCSW 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 even more. Parents trying to find 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.
Sandra Berenbaum, who has counseled Lyme patients and their families for over 20 years, has developed responsive psychotherapy, a unique approach to helping families overcome the challenges of Lyme disease. Co-author Dorothy Kupcha Leland, whose daughter has the illness, is a national advocate who writes the blog Touched by Lyme on the LDo website. She is the President of LDo, and has co-authored an excellent book on Lyme disease, this one with her daughter, Rachel. Through Rachel’s diaries, she gives us excellent insight into a teenager’s Lyme journey.
“We need a structured and comprehensive support system in place for families to navigate the difficult waters of Lyme and chronic illness. We finally have that guidance in this book.” From the Foreword by Richard Horowitz MD, author of Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Illness.
Sandy’s and Dorothy’s book was the first place winner in the adult non-fiction category of the 2016 Northern California Publishers and Authors Association. It also received an honorable mention in the health category of the 2016 Eric Hoffer Book Award.
"The book opens with the authors' experiences with Lyme Disease: a mother seeking a diagnosis and a therapist stricken with Bell's Palsy, a well-known Lyme calling card. The chapters continue to blend the authors' different perspectives, weaving a narrative applicable to anyone touched by the disease. While personal, the book contains myriad facts and a top-down view of the disease and its current impact in the US. Because of professional dogmatism, poor detection, and even financial interests, Lyme Disease remains an ailment confined to the shadows, making sufferers (especially parents) reliant on social support as much as medical protocol. In this way, the title complements the growing online communities of afflicted and affected people. Sections tackle everything from diet and exercise to mitigating the disease's impact on a child's social well-being. It effectively straddles the de facto faith in mainstream medicine and the often more personal and intuitive insights of alternative medicine."
- US Review of Books
"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 in When Your Child Has Lyme Disease: A Parent's Survival Guide. 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."
- Pamela Weintraub, Author of "Cure Unknown: Inside the Lyme Epidemic"
Dorothy and Sandy Speaking at the Franklin Roosevelt Library in Hyde Park, NY
Read Below for an excerpt from “When Your Child Has Lyme Disease: A Parent’s Survival Guide"
Finding the right psychotherapist for your child with Lyme Disease:
For some parents and children confronting the challenges of Lyme disease, psychotherapy or family therapy can be a big help. Before seeking a psychotherapist, however, there are a number of things to consider.
Different therapists use a wide variety of techniques in their work with clients. Methods that work well for the general client population may not be effective for Lyme patients. Some may actually be counterproductive.
For example, if the therapist doesn’t realize that fatigue in Lyme patients is far beyond merely being tired, she may expect more than the patient is capable of doing. If the therapist doesn’t understand the reason for long-term medical treatment, and a 16-year-old girl complains about being on antibiotics, the therapist might support the teenager’s position, and encourage her to stand up to her parents on the issue. Without appreciating the complexities of tick-borne diseases, a therapist may not understand the many reasons why patients cannot attend school for long periods of time, or go away to college right after high school graduation.
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Different goals for Lyme patients:
One goal of psychotherapy is to promote improvements in the way a client functions—going to school or work, doing well there, being able to do errands and chores. Yet, for many Lyme patients, no amount of psychotherapy will improve their ability to function. That’s because their functional problems stem from their physical illness, which won’t be fixed without effective medical treatment. A therapist who knows this will understand the need to help the Lyme patient set different goals than could be reachable for a client that does not have Lyme.
There is widespread misunderstanding of Lyme disease in the medical arena. Just reaching a diagnosis of Lyme disease can be a traumatic experience for the child and the whole family. This trauma, on top of that caused by the illness itself, can give rise to issues not present among others seeking therapy, even those with most serious illnesses.
Consider the following scenario, an example of one I commonly see with families in my practice. When their 8-year-old son first starts exhibiting joint pain, headaches or other symptoms, the parents take him to the pediatrician. Not recognizing that he may have Lyme disease, the doctor tries a variety of treatments that do not bring relief. Then he refers them to a rheumatologist or other specialist, who also fails to consider that Lyme disease might be the cause of this boy’s illness. The specialist tries a variety of treatments that don’t help either. The child continues to complain about pain and misses a lot of school because of it. Suspecting that the problem is psychosomatic, the doctors give up exploring underlying medical explanations. They refer the child to a psychiatrist.
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Faulty assumptions:
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.
Physical causes of mental symptoms:
In my experience, many Lyme patients are misdiagnosed with mental illness because doctors fail to uncover the physical origin of their symptoms. The problem is not limited to tick-borne diseases. According to Harvard psychiatrist Barbara Schildkrout, more than 100 physical ailments can manifest symptoms that appear to be mental illness. In her book “Unmasking Psychological Symptoms,” Schildkrout writes:
Many widespread and familiar maladies can masquerade as mental disorders: thyroid disorders, diabetes, Alzheimer’s disease and other dementias, sleep apnea and other sleep disorders, temporal lobe epilepsy, HIV, the long-term consequences of head trauma, Lyme disease, and the side effects of medications, to name only a few. These and other physical conditions are common in patients who are seen by mental health practitioners; these medical conditions are also often the very source of the presenting clinical picture.
Dr. Robert Bransfield is a psychiatrist and noted expert on how Lyme disease affects the brain. He says Lyme-related psychiatric symptoms may start with brain fog and fatigue, progress to anxiety and depression, and eventually lead to major psychiatric disorders such as psychosis and suicide. He characterizes Lyme disease as a brain trauma and notes that it can cause different impairments in different people.
Most research into Lyme and the brain looks at adults, not children. However, in 2001, a study published in the Journal of Neuropsychiatry and Clinical Neurosciences compared children with neurological Lyme disease to healthy control subjects. The researchers found that children with Lyme had significantly more cognitive and psychiatric issues. They concluded, “Lyme disease in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments.”