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Resources for Children with Lyme Disease
https://www.lymedisease.org/wp-content/uploads/2014/08/Image15-Jones-ABT.pdf An important PDF paper on Dr. Jones explaining the need for antibiotics to treat Lyme Disease in children.
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Financial Resources for Children with Lyme Disease
http://lymelightfoundation.org/
LymeAid 4 Kids
www.uhccf.org/about/
http://lymelightfoundation.org/
LymeAid 4 Kids
www.uhccf.org/about/
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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
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http://thefemaleyoda.com/once-upon-a-lyme/#p=10
http://thefemaleyoda.com/once-upon-a-lyme/#p=10
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How Lyme Disease Affects a Child's Learning and their Family
http://www.lymefamilies.com/my_articles/
Kids and Lyme Disease: How It Affects Their Learning http://www.lymefamilies.com/wp-content/uploads/2009/07/How_Lyme_Affects_Learning.pdf (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:
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.
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Tick-Borne Disease in Children and Adolescents:
A Medical Illness/A Multidisciplinary “Cure” http://www.lymefamilies.com/wp-content/uploads/2009/07/Integrated_Treatment.pdf (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 http://www.lymefamilies.com/wp-content/uploads/2009/07/Lyme_in_the_family.pdf (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 http://www.lymefamilies.com/wp-content/uploads/2009/07/Screening_Protocol.pdf (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 http://www.lymefamilies.com/wp-content/uploads/Identifying-Lyme-in-the-Schools.pdf (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._________________________________________________________________________
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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.
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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.
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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.
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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
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Sandy Berenbaum, LCSW, BCD • P.O. Box 28 • Southbury, CT • 06488
Phone: (203) 240-7787
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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
FOR PHYSICIAN REFERRALS IN THE MIDCOAST MAINE AREA PLEASE CONTACT PAULA JACKSON OR ANGELE RICE FOR FURTHER INFORMATION.
FOR PHYSICIAN REFERRALS IN THE MIDCOAST MAINE AREA PLEASE CONTACT PAULA JACKSON OR ANGELE RICE FOR FURTHER INFORMATION.