Resources for Children with Lyme Disease An important PDF presentation on what every parent should know about Pediatric Lyme Disease. An important PDF paper on Dr. Jones explaining the need for antibiotics to treat Lyme Disease in children.

Financial Resources  awards grants to children and young adults through age 25 at the time of application.

LymeAid 4 Kids  Are you under 21 and without medical insurance coverage for Lyme disease? Do you think you may have Lyme disease?  If you answered yes to both these questions, the Lyme Disease Association’s LymeAid 4 Kids fund may help you. Now accepting applications for 2019.  The mission of UHCCF is to provide medical grants that significantly enhance the clinical condition or quality of life of children across the United States, covered under a commercial health insurance plan and are 16 years old or younger.
grants for children under the age of 21. 


The CDC says that Lyme disease is most common among boys aged 5-19. This age group is affected at three times the average rate of all other age groups. Around 25% of all reported cases are children.

Children with Lyme disease have special issues. Since they did not have much of a history of wellness prior to becoming ill, Tthey don’t know what “normal” is. They can’t always explain what is feels wrong. Because the symptoms of Lyme disease can be non-specific, vague, and changeable, parents and teachers may suspect them of malingering or making things up to gain attention. It is also difficult for parents to discern when their child’s symptoms are worse or better, given the difficulties children have making that determination themselves.

Children with Lyme disease may miss important developmental stages, due to because of social isolation caused by chronic ill health, and the failure of their peers to understand the nature and degree of their illness. They may fall behind their peers in school because their brains are not functioning properly. Children suffer when their bodies hurt, when the illness causes them not to be able to have restorative sleep every night, when they must struggle in school, when they don’t even feel like playing. They may feel confused, lost, and betrayed by caregivers who fail to recognize that something organic is going on, but instead blame them.. Isolation from parents occurs when parents don’t understood the nature of the illness, and the implications for the child’s functioning.

According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections. The resulting neurologic symptoms of Lyme disease are often misdiagnosed. Lyme pediatric specialist Charles Ray Jones, MD, compiled a list of common symptoms of infection in his young patients:

  • severe fatigue unrelieved by rest
  • insomnia
  • headaches
  • nausea, abdominal pain
  • impaired concentration
  • poor short-term memory
  • inability to sustain attention
  • difficulty thinking and expressing thoughts
  • difficulty reading and writing
  • being overwhelmed by schoolwork
  • difficulty making decisions
  • confusion
  • uncharacteristic behavior
  • outbursts and mood swings
  • fevers/chills
  • joint pain
  • dizziness
  • noise and light sensitivity

  • Dr. Jones has also documented congenital, or gestational, Lyme disease in some children who were infected in utero or by breastfeeding. In these patients his suspicion is raised when the child has:
  • frequent fevers
  • increased incidence of ear and throat infections
  • increased incidence of pneumonia
  • irritability
  • joint and body pain
  • poor muscle tone
  • gastroesophageal reflux
  • small windpipe (tracheomalacia)
  • cataracts and other eye problems
  • developmental delay
  • learning disabilities
  • psychiatric problems 

Among Jones’ patients, 50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).

According to neuropsychiatrist Brian Fallon, MD, director of theSurveys University Lyme Disease Research Center and principal investigator of an NIH-funded study on chronic Lyme disease, about 15 percent of infected patients (not necessarily of children) develop objective neurologic abnormalities, most commonly displaying part of the triad of aseptic meningitis, cranial neuritis, and motor sensory radiculitis.

Case reports (again, not necessarily of children) have linked a variety of neurologic syndromes to late Lyme disease, including:

  • Blindness 
  • Progressive demyelinating-like syndromes (mimicking Multiple sclerosis)
  • Amyotrophic lateral sclerosis (ALS) 
  • Guillain-Barre
  • Progressive dementias 
  • Seizure disorders
  • Strokes 
  • Extrapyramidal disorders
  • Encephalomyelitis 
  • Spastic paraparesis
  • Ataxia 
  • Bladder dysfunction
  • Cranial neuropathy  

How Lyme Disease Affects a Child's Learning and their Family and Lyme Disease: How It Affects Their Learning (pdf file)
Lyme disease can have a profound affect on a child’s ability to learn. This article discusses the complexity of the problems that children with chronic Lyme face in the school environment and what can be done to support them.

Tick-Borne Disease in Children and Adolescents:
A Medical Illness/A Multidisciplinary “Cure” (pdf file)

Lyme is a complex illness that, when chronic, often effects the brain, causing impairments in mood, cognition and attention. An integrated, or team approach to treating Lyme patients can provide help, support, and solutions to problems generated by the illness, beyond the medical treatment itself.

Reflections on Lyme Disease in the Family (pdf file)

Lyme disease in a child or adolescent can have a profound effect on a family. This article touches on some of the issues that face parents and offers parenting strategies to help ease the journey.

Lyme Disease Screening Protocol (pdf file)

This is a simple screening tool I developed with my former co-therapist Lynne Canon, now retired. It was designed to help mental health practitioners determine whether Lyme disease could be an underlying cause of presenting problems among children or adolescents. Our hope is that by using this tool more cases of Lyme disease may be recognized by mental health practitioners, resulting in earlier medical diagnosis and the need for less complex and lengthy treatment. If a tick-borne illness is present, comprehensive medical treatment can lead to more successful resolution of mental health problems, as well.

Identifying Lyme Disease in the Schools (pdf file)

Education regarding Lyme disease is an important service we can provide to our schools. This handout can help teachers, nurses and guidance counselors identify children who may have Lyme, leading to early diagnosis and treatment. Since Lyme disease can have a profound impact on a child’s ability to learn, school professionals have a different view of the child than the parents or pediatrician might.

Additional Resources

When Your Child Has Lyme Disease: A Parent’s Survival Guide (2015)
By Sandra K. Berenbaum, LCSW, BCD and Dorothy Kupcha Leland
Foreword by Richard Horowitz, MD

When Your Child Has Lyme Disease: A Parent’s Survival Guide is filled with information parents need to know about the illness, 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 K. 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 tick-borne disease. Co-author Dorothy Kupcha Leland, whose daughter has the illness, is a national activist who writes the blog Touched by Lyme.

To Read An Excerpt from this book, subscribe to Lyme Parent News, or order this book please visit: