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 for Children with Lyme Disease
LymeAid 4 Kids 


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
Once Upon A Lyme an online, printable Children's book teaching children in a fun way how to check for ticks and what to do if they find one.


How Lyme Disease Affects a Child's Learning and their Family

Kids 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.

Dr. Charles Ray Jones
111 Park Street Ground Floor
New Haven, CT  06511
Phone 203-772-1123
Fax 203-772-0682

Dr. Jones is most frequently described by parents as an "angel", however, he is known world wide as a true hero, a dedicated doctor who will not allow a child to suffer if he can do anything about it.  He and his wonderful staff have helped countless children live a much better life.    

Dr. Charles Ray Jones is the world’s foremost expert on tick-borne diseases in children. Scientific writer Pam Weintraub wrote about him and his young patients in A Feeling for the Organism (Lyme Times #32).
"As the eighties passed, the children coming to Jones’ practice presented with increasingly severe disease. Often unrecognized and untreated by other physicians, they had progressed beyond the initial, arthritic symptoms of his first patients, manifesting not only the sweep of problems meticulously recorded by Steere, but many others as well. “I found the disease could impact almost any organ of the body, or the whole body, in systemic fashion,” says Jones. While many patients presented with rash and arthritis, of course, cognitive and neurological symptoms were increasingly prevalent. Some patients were blind, some so fatigued they could not sit or walk, and some violent, or apparently autistic, or paralyzed by the sudden eruption of obsessive compulsive disorder (OCD.) Depending upon where the spirochetes gravitated in the body, and what particular strain of bacteria was involved, presentation could be gastrointestinal, neurological, cardiac, dermatological, arthritic, urological, ocular, or a combination of these. There might be just a single symptom, such as a severe, unending headache, or a multitude of symptoms, so that a child’s entire body was wracked by pain." To download story, click here.
Dr. Jones’ clinical acumen and extensive experience with over 10,000 young patients led him to the practice of continuing antibiotic therapy until all symptoms resolve. His paper titled Rationale on Long Term Antibiotic Therapy in Treating Lyme Disease may be downloaded by clicking here.

Dorothy Pietrucha, MD

Dorothy Pietrucha, MD, a pediatric neurologist, presents an overview of diagnosis and treatment with case histories in a paper, Neurological Manifestations of Lyme Disease in Children, on LymeNet. To download this paper, click here.


Ann Corson, MD

Ann Corson, MD, board certified family practitioner, has a full time Lyme and tick-borne disease practice in Chester County, PA. She has worked with Drs. Joseph Burrascano (Long Island, NY) and Charles Ray Jones (New Haven, CT) in their offices on grants provided by ILADS. Her interest in pediatric Lyme took off when her son was diagnosed with Lyme after a long illness. You can read his story beginning on page 33 of the special Children’s Education issue of the Lyme Times, #45. Click here to download.
Dr. Corson shares her slideshow on pediatric Lyme disease. View by clicking here.
Dr. Corson also made a slide presentation to a group of psychiatrists. These slides emphasize neuropsychiatric presentations of Lyme disease and include case studies of three teenagers. Click here to view.


Psychotherapist Sandy Berenbaum, LCSW, BCD

Psychotherapist Sandy Berenbaum, LCSW, BCD, has devoted much of her career to children and adolescents with Lyme disease. She is the Mental Health Editor and the Children’s Editor of the Lyme Times. Read her story Kids and Lyme Disease – How It Affects Their Learning, which describes the problems and offers both practical and therapeutic solutions. Click here to download.
Read Berenbaum and Cohen’s paper, Lyme Disease - a Psychotherapy Perspective on the role of the psychotherapist in helping children with Lyme disease by clicking here.
Read Berenbaum et al’s 1999 handbook on Treatment of Adolescents with Neuropsychiatric Lyme Disease by clicking here.
Read Marcus Cohen’s 2006 in-depth interview with Sandy Berenbaum and Lyme Disease Association President Pat Smith by clicking here.

Sandy Berenbaum, LCSW, BCD • P.O. Box 28 • Southbury, CT • 06488
Phone: (203) 240-7787


Psychiatrist Virgina Sherr

Pennsylvania psychiatrist Virgina Sherr has treated children with Lyme disease. She also happens to be a prolific and talented writer who has contributed many stories to the Lyme Times. Read her poignant story of a teenager with Lyme disease who ended up in a juvenile detention unit before she met Dr. Sherr, and another young man who was in jail. Both of these young people, Dr. Sherr laments, “ have lost any idea of what they really are like, what they are capable of, or who they could be. They do not remember and have lost track of the person they started out to be.” Click here