KidsMD Health Topics

Lyme Disease

  • "Individualized evaluation is the optimal approach for treating a patient with Lyme disease. Most cases of Lyme disease resolve with a finite course of antibiotics.”

    --Catherine Lachenauer, MD, Boston Children's Hospital's director of the Infectious Diseases Outpatient Practice

    As the weather turns warmer, many parents are concerned about keeping their kids safe from seasonal dangers, including sunburn, dehydration and swimming on a full stomach. A more recent addition to this list is tick bites, due to the rising public awareness – and number of reported cases – of Lyme disease (LD) in the United States.

    Lyme disease is caused by a bite from a certain kind of tick known as a “black-legged tick” that has been infected with a bacterium. It’s not a chronic disease, and when discovered early, is easily treated with antibiotics; but left untreated, it can attack many systems of your child's body, including the skin, heart, nerves and joints.

    • Lyme disease is the most common tick-borne disease in the United States.

    • You can’t catch Lyme disease from a person – it’s only acquired from a black-legged tick.

    • You can contract Lyme disease even if you’ve had it – and been treated for it – before.

    • Lyme disease is a year-round problem, although April through October is considered tick season, and 80 percent of Lyme disease cases occur in June and July.

    • In the United States, most cases occur in the coastal Northeast, the mid-Atlantic region, Wisconsin, Minnesota and northern California.


    How Children’s Hospital Boston approaches Lyme disease

    The Division of Infectious Diseases at Children's provides comprehensive care for children and adolescents with Lyme disease and other types of infections. Our services include consultation, evaluation, treatment and management of long-term conditions.

     

    Reviewed by Fatma Dedeoglu, MD
    © Children’s Hospital Boston; 2011

    Boston Children's Hospital
    300 Longwood Avenue
    Boston MA 02115

    (617) 919-2900
    fax: 617-667-1742


  • What is Lyme disease?

    Lyme disease is an infection caused when one of several types of tiny black tick bites a human or other animal, injecting a bacterium. It’s not a chronic disease, and when discovered early, is easily treated with antibiotics; but left untreated, it can attack many systems of your child's body, including the skin, heart, nerves and joints.

    The disease is transmitted to humans from contact with the tick—not spread from one human to another.

    Will my child be OK?

    When Lyme disease is caught early, the vast majority of children make a full recovery. Despite the fact that the disease occurs more often in children than adults, the neurological symptoms of late-stage Lyme disease appear to be rare in children.

    What should I do if I find a tick on my child?

    First, don't panic – two things are on your side:

    1. The risk of developing Lyme disease after being bitten by a tick is only about 1 percent to 3 percent.

    2. Ticks can’t transmit the bacteria that cause Lyme disease until they attach and begin to feed, which makes them engorged. This can take up to 48 hours, so if you find a tick that isn’t engorged, your child may be less likely to contract Lyme disease. The department of Epidemiology and Public Health at the Yale School of Medicine has a visual aid (.pdf) to help you determine how long a tick may have been attached.

    All you need to do is to remove the tick and watch for symptoms. Here’s how:

    Remove the tick

    1. Remove the tick using a fine-tipped pair of tweezers. Grasp the body of the tick and pull in an upward motion until the tick comes out. Do not squeeze or twist the tick’s body.  Put the tick in a bottle.

    2. Take note of the size and color of the tick, as well as your estimate of the time it has been attached and whether or not it is engorged.

    3. It's not necessary to take your child to a doctor after a tick bite, but if you have questions or want a consult, see your child's pediatrician. In some cases, your child’s doctor may prescribe antibiotics to prevent Lyme disease from developing.

    Watch for symptoms

    1. If your child has been bitten by a tick, keep an eye out for a red, circular or oval-shaped rash that’s clear in the middle at the site of the bite (sometimes called a “bull’s eye rash”). Some children may have several of these rashes.

    2. Other symptoms that could indicate Lyme disease include:

    • fever
    • headache
    • fatigue
    • muscle aches
    • joint aches

    If your child develops any of these symptoms, call her pediatrician. If it turns out that your child has Lyme disease, a course of antibiotics typically resolves the illness.

    How common is Lyme disease?

    More and more cases of Lyme disease are being reported each year. According to the Center for Disease Control (CDC), about 30,000 people were infected in 2009 in the United States, where it accounts for more than 90 percent of all insect-borne illness.

    Where do ticks carrying Lyme disease live?

    These ticks are found in certain parts of the country (the Northeast and Mid-Atlantic states, the northern Midwest and the West Coast), and are often found on white-footed mice and white-tailed deer most commonly living in woods and high grass.

    Why is it called Lyme disease?

    The disease takes its name from Lyme, Connecticut, where the illness was first identified in the United States in 1975.

    If you've had Lyme disease already, can you get it again?

    Yes—humans do not develop immunity to Lyme disease, so re-infection is possible.

     

    Causes

    What causes Lyme disease?

    Lyme disease is caused when one of several types of tiny black tick bites a human, injecting a bacterium into the skin. It cannot be spread from human to human.

    There are three main bacteria that can cause Lyme disease, but only one of them, Borrelia burgdorferi, is found in the United States. The other two are found in Europe and Asia, and people infected with them may show different symptoms.

     

    Symptoms

    What are the symptoms of Lyme disease?

    The list of possible symptoms for Lyme disease is long, and symptoms can affect every part of the body. Symptoms usually begin to appear within three to 30 days, and each child may experience them differently.

    Stage 1 (between 3  to 30 days after the bite)

    Around 70 to 80 percent of people with Lyme disease develop a rash that is pink in the center and a deeper red on the surrounding skin. Its scientific name is erythema migrans, and it’s also sometimes called a “bull’s eye rash.” This rash:

    • usually appears within 7 to 14 days of infection, but may not appear at all
    • expands over the course of days or weeks, if left untreated
    • may not resemble a bull’s eye, but instead just look red
    • is usually flat
    • may be very small or very large (up to 12 inches across)
    • may be mistaken for such skin problems as hives, eczema, sunburn, poison ivy and flea bites
    • may itch or feel hot, or not be felt at all
    • is rarely painful

    Also, your child may show some flu-like symptoms, such as:

    • headache
    • stiff neck
    • aches and pains in muscles and joints
    • low-grade fever and chills
    • fatigue
    • poor appetite
    • sore throat
    • swollen glands

    Stage 2 (weeks to months after the bite)

    If your child has Lyme disease that has gone undiagnosed and untreated, the bacteria may enter her bloodstream and travel to other tissues in her body. After a few weeks to months, she may show signs and symptoms including: 

    Stage 3 (after several months to years)

    By far, the most common late-stage symptom of Lyme disease is arthritis, particularly in the large joints, especially the knee. Typically, the joints will be more swollen and tender than painful, and anti-inflammatory medicine can help. 

    The arthritis usually lasts for several weeks before getting better, and then reappearing in a different joint.  In the vast majority of cases, the arthritis eventually goes away on its own.

     

    FAQ

    Q: Will my child be OK?
    A:
    Most likely. Caught early, the vast majority of children make a full recovery.

    Q: Is Lyme disease contagious?
    A: No, not from person-to-person. You can only get Lyme disease from being bitten from a tick that is carrying the bacteria.

    Q: Can my child be diagnosed with Lyme disease if there’s no evidence of a tick bite?
    A:
    Yes, many people with Lyme disease are diagnosed without any knowledge of a tick bite, if there’s a possibility that they may have been exposed to one of the bacteria-carrying ticks.

    Q: Is there a vaccine for Lyme disease?
    A:
    There used to be, but it was taken off the market in 2002. No vaccine for Lyme disease is currently available.

    Q: Is Lyme disease chronic?
    A:
    Doctors don’t believe that Lyme disease is chronic, but some children experience what’s called “post-infectious syndrome.” This is a condition that occurs after many bacterial and viral infections, including mononucleosis and hepatitis A.

    There’s a wide range of symptoms that your child could experience from post-infectious syndrome, but some of the more common ones include:

    • feeling fatigued
    • weakness
    • joint aches and pains
    • shooting pains
    • headaches
    • difficulty sleeping
    • problems concentrating

    Q: How is post-infectious syndrome treated?
    A:
    Since post-infectious syndrome is not itself caused by an infectious agent (it follows an infection caused by an infectious agent), doctors generally don’t prescribe antibiotics. Most often, different treatment modalities are used, which may include:

    • keeping to a set sleep schedule
    • exercise
    • acupuncture
    • biofeedback
    • physical therapy
    • anti-inflammatory drugs to help with aches and pains

    Q: How long does post-infectious syndrome last? 
    A:
    Each child is different, but it’s not uncommon for symptoms of post-infectious syndrome to linger for months, or even years. They may seem to come and go, and can be influenced by stress or any other infections or illnesses your child experiences. But most children do make a full recovery.

    Q: If you've had Lyme disease already, can you get it again?
    A:
    Yes—humans do not develop immunity to Lyme disease, so re-infection is possible.

     

    Prevention

    How can Lyme disease be prevented?

    1. Regular tick checks

    Check yourself and your family frequently for ticks, especially if you live or are traveling in an area where the ticks are common – even if you’ve only been out in your yard. Black-legged ticks can be extremely tiny, measuring less than one millimeter across, so make sure you search your child’s clothing and body very thoroughly. 

    Since it takes about 48 hours for an infected tick to transmit Lyme disease, one thorough check per day is enough (and much better than several hasty checks). Remember to check:

    • all parts of the body that bend: behind the knees, between fingers and toes, underarms and groin
    • other areas where ticks are commonly found: belly button, in and behind the ears, neck, hairline and top of the head
    • hair – run a fine-toothed comb through to check for ticks
    • where underwear waistband touches the skin
    • where pants waistband touches the skin
    • anywhere else clothing presses on the skin

    It’s also a good idea to visually check all other areas of your child's body and hair, and run fingers gently over skin.

    2. Keep ticks away from skin.

    • Ticks can’t bite through clothes, so dress your family in:
      • long-sleeved shirts tucked into pants
      • long pants with legs tucked into socks
      • socks and closed-toed shoes
      • light-colored clothing so any ticks are visible
    • Shower after all outdoor activities are over for the day. It may take four to six hours for ticks to attach firmly to skin. Showering will help remove unattached ticks.

    • Products that contain DEET are tick-repellent, but do not kill the tick and are not 100 percent effective. Use a brand of insect repellent that is designated as child-safe if your child is 1 year or older; for infants, check with your pediatrician about whether it’s ok to use repellent and if so, what brands he recommends.

    • Treat clothing with a product that contains permethrin, which is known to kill ticks on contact.

    3. Try to avoid tick playgrounds.

    • Ticks like low-level shrubs and grasses, particularly at the edges of wooded areas. If you’re hiking, try to stay in the center of the trail and avoid bushwhacking.
    • Walk on cleared paths or pavement through wooded areas and fields when possible.

  • The first step in treating your child is forming an accurate and complete diagnosis, and since Lyme disease can resemble many other conditions, it’s important that your child be seen by an experienced physician. Your child’s doctor may: 

    • perform a physical exam, looking for evidence of the erythema migrans rash

    • ask questions about any activities that may have brought your child into contact with ticks, if there’s been no known tick bite

    • order lab tests in order to rule out other conditions

    Testing for Lyme disease

    It is possible to test for Lyme disease, but the tests aren’t very reliable in the early stages of infection, since it takes time for your child’s immune system to produce the response that the tests look for. That means that your child’s test may come back negative, but she may still have LD.

    If your child has started – or even finished – treatment for Lyme disease, she may still test positive for it. That’s because there are still antibodies in her blood that the test identifies as fighting LD, even though the Lyme bacterium is no longer present, and your child is no longer infected.

    Since testing in the early stages – when the rash first appears – is unreliable, doctors diagnose Lyme disease based on the presence of physical symptoms (such as the rash) plus known or possible exposure to ticks carrying the bacteria. Research is underway to develop and improve methods for diagnosing Lyme disease.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.

  • At Boston Children's Hospital, we view the diagnosis as a starting point: Having identified your child's condition, we're able to begin the process of treating her, so that we may ultimately return her to good health. 

    Lyme disease is most often treated with antibiotics, such as doxycycline, amoxicillin or cefuroxime. If your child has been diagnosed early, she'll probably take antibiotics by mouth for 2 to 3 weeks. Longer courses are prescribed for children who were diagnosed later, or who – for whatever reason – don't respond to the first course of treatment (often because the full dose has not been taken).

    Please keep in mind that it's important that your child has been prescribed antibiotics for Lyme disease, it's crucial that she finish the full course– even if she's feeling better and the rash is gone, she needs the full dosage to make sure that the infection has been treated properly.

    If your child doesn't respond to oral antibiotics, or if the Lyme disease is affecting her central nervous system, her doctor may arrange for her to receive antibiotics intravenously (through an IV). Most often, these children aren't hospitalized – in many cases, we can arrange for a nurse to come to your home to administer the IV, or else teach you or another family member how to do it. Doctors very rarely prescribe a course of antibiotics that lasts longer than 30 days. 

    Is there a vaccine for Lyme disease?

    There used to be, but it was taken off the market in 2002. No vaccine for Lyme disease is currently available.

    What's the long-term outlook for my child?

    If Lyme disease is caught and treated early, the prognosis is excellent – most children will make a full recovery. If the infection has spread throughout her body, it may cause more serious issues, such as problems with her nervous system or heart. A very small percentage of people with Lyme arthritis go on to develop chronic arthritis.

    Many children with Lyme disease go on to experience what's called “post-infectious syndrome.” This is a condition that occurs after many bacterial and viral infections, including mononucleosis and hepatitis A.

    There's a wide range of symptoms that your child could experience from post-infectious syndrome, but some of the more common ones include:

    • feeling fatigued
    • weakness
    • joint aches and pains
    • shooting pains
    • headaches
    • difficulty sleeping
    • problems concentrating

    How is post-infectious disease syndrome treated? 

    Since post-infectious disease syndrome is not itself caused by an infectious agent (it follows an infection caused by an infectious agent), doctors generally don't prescribe antibiotics. Most often, different treatment modalities are used, which may include:

    • keeping to a set sleep schedule
    • exercise
    • acupuncture
    • biofeedback
    • physical therapy
    • anti-inflammatory drugs to help with aches and pains

    How long does post-infectious syndrome last?  

    Each child is different, but it's not uncommon for symptoms of post-infectious syndrome to linger for months, or even years, and they can be made worse by stress or other illness. But most children do make a full recovery.

    Follow-up

    If your child has developed Lyme-related complications, she may be seen by—and asked to follow up with—another Children's specialist, such as a rheumatologist, cardiologist or neurologist. The wide range of pediatric expertise at Children's means that your child can receive coordinated care for any lingering issues after her Lyme disease has been treated.

     

    Coping and support

    We know how difficult a diagnosis of Lyme disease can be, both for your child and for your whole family. That's why our physicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs. Here are some of the ways in which we can help:  

    Patient education: Our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have —What symptoms might my child have? What do we do next? They will also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose child has been diagnosed with Lyme disease? We may be able to put you in touch with other families who can share their experience.

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    The Center for Disease Control offers a brochure (.pdf) with good information about Lyme disease.

    Alternative medicine

    When your child is facing an illness like Lyme disease, it's understandable that you may want to explore all the treatment options, even those that aren't considered part of conventional medicine. Such treatments — generally known as alternative or complementary medicine — encompass things like acupuncture and special diets or dietary supplements, and some people with arthritis do seem to benefit from them.

    However, there's little research showing how effective or safe most of these treatments are, and no evidence that any are as effective in fighting Lyme disease as the drugs your child's doctor may prescribe. If you're interested in exploring an alternative treatment for Lyme disease, be sure to talk it over with your child's doctor first and — if he agrees the treatment may have value and is not harmful — always keep him up to date on how your child is coming along.

  • Children’s Hospital Boston is home to the world’s largest research program at a pediatric institution, and we’re known for pioneering new treatments. A large part of our success comes from our commitment to research—and to advancing the frontiers of what’s possible through our innovative approach.

    Research in the Division of Infectious Diseases includes both basic investigation and clinical research. The bench research in the division has the broad objective of understanding basic mechanisms of microbial pathogenesis and the related host responses that mediate susceptibility to infection, host injury and protective immunity. Investigation targets viral, bacterial and fungal pathogens of major significance in community acquired infections in the United States, in infections of immunocompromised hosts, and in global public health. Current projects include:

    • pathogen-host signaling in streptococcal infection
    • innate immunity in bacterial infection
    • regulation of bacterial gene expression
    • HIV pathogenesis, immune response and vaccine development
    • regulation of morphogenesis in Candida albicans

    Clinical research is focused in two broad areas: clinical trials in pediatric HIV and clinical epidemiology/clinical decision-making.


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