Information on Lyme disease to educators and students is vital so that children with Lyme disease are understood by their teachers and their peers, and they are given proper educational accommodations by the school. Since children are at the highest risk of acquiring the disease, they need materials on prevention. LDA also provides monies for children without insurance coverage from its LymeAid 4 Kids fund.

25 May 2010

You Can Make A Difference to a Child by Reducing Risk of Lyme Disease
Network to Reduce Lyme Disease in School-Aged Children, Washington, DC

Click here for link to full article

NASN Sch Nurse. 2010 May;25(3):110-3.

Abstract: Early detection is critical since you are on the front lines when educating school staff and students. You, as the school nurse, can make a huge difference in a child's life by providing guidance on Lyme disease prevention, detection, and treatment to your school staff, as well as the parents of the community

16 June 2016

2016 BoyScoutTroop66 talkOn June 8, LDA President Pat Smith presented the Powerpoint "How A Tick Can Make you Sick" to all 3 third grades in the Allenwood Elementary School, Wall Township, NJ, and provided the same on June 14 to all five 3rd grades in Newbury School in Howell Township, NJ. In an hour long session, she explained what Lyme is, where it comes from, the 3 types of ticks that cause problems in NJ with many different tick-borne diseases, how to protect against ticks, and how to properly remove a tick.

Learn more
10 July 2015

 In June, Lyme Disease Association President Pat Smith presented a powerpoint, How A Tick Can Make You Sick, to the entire Wall NJ Intermediate School student body,  more than 1,000 students, and their teachers 

Learn more
23 November 2014

On Nov. 17, Governor Corbett held a ceremonial signing of Senate Bill #177, The Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention Act. The bill includes the first tick surveillance program in Pennsylvania, educational access for affected school children, a prevention focus in the schools regarding children's tick bites on school property, and a new task force to provide recommendations to enhance prevention, educate doctors on current research on these emerging diseases, improve the patient experience, and provide access to more appropriate care in PA.

Learn more
28 April 2012

We in the Lyme world all know that tick-borne diseases are caused by complex organisms that can affect just about any part of the body, and we realize that the key to getting well is finding a Lyme- literate doctor, obtaining an accurate diagnosis, and comprehensive, efficacious treatment. While treating the medical aspect of the disease is paramount, for children and adolescents with chronic Lyme disease, medical treatment alone is often not enough. Many of these children have Lyme related psychiatric symptoms or educational impairments. Their serious symptoms, combined with the duration of the illness often leads to gaps in their development. Their isolation can leave them lonely, and inhibit their ability to interact with peers. These issues are best addressed through the coordinated efforts of a team.

Children and adolescents with chronic Lyme, often meet the DSM criteria for one or more “mental illnesses”--anxiety disorder, depression, anorexia nervosa, AD/HD, as well as disorders in which behavioral problems manifest--oppositional defiant disorder, conduct disorder, and for some, psychosis. Even though the “mental illness” may be due completely to Lyme, the serious psychiatric symptoms cannot be ignored. For many, psychiatric medications are essential, in managing the symptoms during treatment, including the complex issues of managing symptom flares (Jarisch Herxheimer reactions), brought on by the antibiotics. Thus there is a need for involvement of Lyme-literate psychiatrists who treat children.

These “mental illnesses” carry a constellation of issues. The anorectic children, for example, often have an aversion to certain foods, or a rigid pattern of eating, and there is an obsessional quality to their thinking, about food and exercise. Some put a pathological spin on suggestions doctors make for a “yeast free” diet while on antibiotics, some refuse to take any medications by mouth. Weight gain typical of some Lyme patients terrifies the anorectic, and pathological weight loss brings them comfort. These issues need to be dealt with in individual and family therapy, to keep the anorectic child safe and healthy during the acute phases of the illness and Lyme treatment.

Anxiety is another symptom common to children with Lyme. The anxiety presents for many in their fears about school failure, even as their cognitively impaired brains struggle to succeed. It takes a Lyme-literate team to deal with the anxious child with Lyme--the medical doctor who treats the illness, the psychiatrist who prescribes the medication for anxiety, the psychotherapist who teaches the child and family strategies for dealing with the anxiety, helps the child learn to think in a different way (cognitively-based therapy is helpful here), and the Lyme-literate school team who provides support and accommodations for the child who has impairments that affect learning. The school nurse or guidance counselor can provide a brief respite, and support, for the anxious child, in the middle of the chaos of the school day.

Behavioral problems are often due simply to the infection in the brain, and will resolve as the illness is treated comprehensively. However, the treatment could take a long time, and the behaviors need to be addressed and managed during these difficult times. Intervention and support of a Lyme-literate psychiatrist and psychotherapist, as well as involvement of a parent advocate who develops a plan for managing behaviors in the school setting can make a significant difference in the life of the child and the family. Traditional “behavior plans” are often not effective, when the behavior is driven by an infectious cause.

Attention needs to be paid to the tasks of the various developmental stages the child with chronic Lyme is going through. The most difficult stage to manage is adolescence, where the Lyme patient may deny the illness and resist treatment to be “normal”, in an attempt to individuate. At this stage, some will self-medicate the Lyme symptoms with street drugs. If the child has been ill for a long time, it may be difficult to distinguish between symptoms of the illness and who the child really is. It is helpful if these symptoms are addressed in therapy, as well.

Part of the work of childhood is to develop social skills, to learn how to interact with others. Children learn that at home, in their communities, in school, on the ball field. When a child is ill with chronic Lyme, often her exposure to others is very limited. Some children have been on homebound instruction for months and years, not even having the school community to interact with. Socialization needs can be addressed in therapy, and for those who are seriously ill, some social experiences can be built into their week.

CONCLUSION AND RECOMMENDATIONS

While physicians who treat Lyme are focused on diagnosing and treating the medical illness, it is also important to recognize that there is more to treating the child with Lyme than ridding the body of infection. We need an integrated approach that includes doctors, nurses, psychiatrists, psychotherapists, neuropsychologists, educators, and advocates. It is important that we are aware of each other’s roles, and communicate regularly.

The impact of Lyme disease on children and adolescents is not just a medical issue. By working together to support and treat the whole child, we can help our children achieve more than physical health. They can become resilient, life-loving, successful people, and put the nightmare of the Lyme years behind them.

Click here for printable pdf of article.

Published In Lyme Times Children’s Treatment Issue #42 – Summer, 2005

 

Sandy Berenbaum, LCSW, BCD Family Connections Center for Counseling


Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200

 

© 2005

 

28 April 2012

Ideally, the family is a safe, protective, nurturing unit in which a child develops and grows. The early years are demanding for parents, who, in addition to bonding with their child, must make daily decisions that are vital to their child's life and growth. In contrast, the adolescent years are emotionally challenging, as parents struggle to remain connected, supporting their children’s bid for independence, while protecting them from making sometimes disastrous choices, as the child struggles to develop her own ideas and direction.

Let’s add Lyme disease to this picture. Parents of children with Lyme disease carry an enormous burden, far greater than those outside the Lyme community are likely to understand. They worry about accuracy of diagnosis, selecting the right doctor and treatment approach, paying for treatment that is very costly, and the complexities of identifying and advocating for educational supports that may be necessary for a child to make it through school.

Other members of the family may be ill as well, often the case with Lyme disease. Aside from the increased financial burden, there is the stress of trying to meet the needs of several Lyme disease patients in one family. It is particularly difficult when one of those Lyme patients is a parent, and when the ill parent suffers from neuropsychiatric problems!

Given the complexity and unpredictability of symptoms, and the inadequate understanding of this illness in the greater community, parents often find that they do not have the support of family and friends, as they struggle to cope. Unwittingly, some well-meaning family members may make comments that undermine parents, even challenging the medical decisions that they make. At times, family members mistakenly attribute the child’s symptoms and behaviors to willfulness on the part of the child, or inadequate structure and limits on the part of the parents. Failing to appreciate the complex, debilitating nature of this illness, they do not acknowledge the struggle the family is going through, and are therefore not a reliable source of support. This reality in the life of the family of a child with Lyme can be particularly disappointing and painful!

Behavioral problems are not uncommon in children with chronic Lyme. If the child is subject to rages or other severe psychiatric symptoms, this increases the stress level in the family, and makes the family’s day to day life far more complex. Lacking the support and help they would have hoped to get from their family and friends, parents truly feel isolated. They are often out on a limb with their child, but they are also out there alone.

Where a young child is concerned, although his parents do their best to help him feel safe and protected, hiding their worries and fears, the child surely senses that something is very wrong. Parents can’t help but worry about whether their child will ever fully recover. What might the residual damage be...to his body, to his brain, to his experience of life? On some level, the young child is keenly aware that he is not growing up in the carefree environment that peers may be experiencing. Worries certainly permeate the household. Even deciding whether to allow a child to go on a school field trip, or give permission for a teenager to go hiking with friends may be a struggle for parents, who worry that their child, already very ill, might be re-infected. A sense of normalcy is lost.

Where the adolescent is concerned, a primary issue is how to support the teenager in her efforts to individuate and move toward independence, while taking appropriate precautions for treating the illness. The physical and emotional dependency of a sick teenager may delay or interfere with the

task of individuating. Or, the teenager, supported by inaccurate information that is all around them, may separate by challenging the Lyme diagnosis or treatment, and refusing to go to the doctors or take prescribed medications. In denying their illness, teenagers may even come to believe that their symptoms represent who they are, as they lose touch with the fact that these symptoms are caused by a treatable medical illness. They may therefore see themselves as lazy, not very bright, quick to anger, moody. And, in the process of individuating, they might not believe the evidence their parents and doctors present that these are merely symptoms of the illnes, and not a manifestation of who they really are. How terrifying this is can be for parents!

A child’s illness may call on parents to grow in unaccustomed ways. Parents may find themselves thrust into situations beyond their own comfort level, needing to be more assertive with previously trusted school and medical authority figures or more conciliatory with insurers and others, in order to acheive important goals. The needs of their children often push parents far beyond their comfort zone in these areas. It is important that parents recognize where that comfort zone is, and work to move beyond it, for the sake of their child, and his recovery.

In this complex, demanding world, we need to have compassion, empathy, and understanding for those who are struggling to raise children who have chronic Lyme disease. If we can appreciate the challenges that face them, and respect their decisions, perhaps we can make their world a little bit brighter.

Parenting Strategies from the Trenches

After years of helping parents, children, adolescents and families deal with some of these issues, I have developed the following strategies, to help parents ease their journey:

Maintain a problem-focused approach as you make decisions about diagnosis, doctors, and treatment.

Work at developing a consensus between you and your child’s other parent, whether or not you are still together!

Stay focused on current problems to be solved, and keep worries on the back burner.

Explain what’s going on to your child in concrete, age-appropriate terms.

Maintain your credibility with your child by being truthful.

Be careful with the words you use. Avoid words like "psychotic episode", "manic", or "incurable". Lyme disease is a scary illness. Keep your words from making it scarier.

Be firm when you need to be, but give choices when you can, lots of choices.

Establish and maintain protective boundaries, protecting yourself and your child from family members and friends who doubt your judgment and parenting decisions. Let others know what they can and cannot say.

Build a supportive network - educate your family and friends about Lyme, but don't overload them. Remember, this is your issue, not theirs.

Be open to support, but make it clear that you're not open to being second-guessed. Allow people to help in concrete ways when you're overwhelmed. Let them make meals, pick up the kids, or shop for groceries..

Psychotherapy or family therapy, with a Lyme-knowledgeable therapist, can be an important adjunctive treatment, to help you and your children get through the hard times without residual damage. The model I use is helping Lyme patients and their families go from being victims, to survivors, to thrivers. There’s nowhere that this model is needed more than with families coping with Lyme disease. 

Click here for printable pdf of article.

 

Published in Lyme Times Children’s Treatment Issue #42 – Summer, 2005

 

Sandy Berenbaum, LCSW, BCD Family Connections Center for Counseling


Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200


© 2005

 

Lyme Disease Association, Inc.
PO Box 1438, Jackson, NJ 08527 

888-366-6611 | information line
732-938-7215 | fax
LDA@LymeDiseaseAssociation.org | email

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