KidsMD Health Topics

Guillain Barre Syndrome

  • Guillain-Barre Syndrome
    "In the most common form of Guillain-Barré syndrome, the myelin covering of nerves throughout the body (the “peripheral nerves”) is damaged. (In a rarer form of the disease, the nerve axons themselves are damaged.) This can cause weakness, pain and sometimes temporary paralysis of muscles in the legs, arms, face and chest." (click to enlarge)

    One day your child is fine, the next day she’s a little weak, and then the day after that she can’t walk. For many families of children with Guillian-Barré syndrome (GBS), this is how they first discover that something is wrong. It’s a terrifying experience for any parent to go through.

    Fortunately, Guillain-Barré doesn’t just strike quickly: In most cases, it also goes away quickly. Many children are able to go back to their regular activities in a few weeks.

    Here is some basic information about Guillain-Barré:

    • It’s an autoimmune disorder that affects nerves carrying messages between your child’s brain and the rest of her body.
    • The symptoms include muscle weakness, numbness, pain and sometimes temporary paralysis of muscles in the face, legs and chest. The disease usually starts in your child’s feet or hands and then moves toward her body.
    • Your child will probably need to be admitted to the hospital so doctors can help her recover and monitor her for complications that can be life-threatening.
    • If your child’s chest muscles are severely affected, it can cause breathing problems. If that’s the case, your child may need to be admitted to the intensive care unit and placed on a ventilator until she’s able to breathe on her own again.
    • The vast majority of children recover fully or with mild complications.
    • Some children who’ve had Guillain-Barré later have a relapse and develop a related, more chronic disease, called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).
    • The causes of Guillain-Barré aren’t completely understood. In some cases, it appears to be triggered by an infection. In rare cases it can occur after an immunization.
    • The disease is extremely rare: It affects only about one in 100,000 children.

    How Children’s Hospital Boston approaches Guillain-Barré

    Our team at Children’s is experienced in recognizing the signs of Guillain-Barré and providing excellent monitoring and treatment. We’re dedicated to treating children and adolescents, so our physicians, nurses and technologists are experts at helping kids feel at ease throughout testing and their time in the hospital, and supporting families every step of the way.

    Specialists in our Neuromuscular Program evaluate and treat infants, children and adolescents with Guillain-Barré and other neuropathies. The program brings together pediatric specialists from neurology and other fields so we can provide comprehensive care for our patients. Our team works together with your family to help your child get back to her normal life as quickly and fully as possible.

    Guillain-Barré syndrome: Reviewed by Peter Kang, MD

    © Children’s Hospital Boston, 2010

    Children's Neurology and Neurosurgery ranked #1

    Boston Children’s has been ranked #1 in Neurology and Neurosurgery by U.S. News & World Report in its 2014-15 rankings of pediatric hospitals—and we got top marks in many other fields, too. Get all the details on the U.S. News website.

  • Guillain-Barré syndrome (GBS) is an acute (short-term) autoimmune disorder that affects the peripheral nervous system—the system of nerves that run throughout your child’s body, outside the brain and spinal cord. It can cause muscle weakness, pain and sometimes even temporary paralysis of muscles in the legs, arms, face and chest. The disease often starts in the legs, so the first symptom you may see is that your child isn’t able to walk.

    Guillain-Barré usually develops over the course of just a few days. If your child is having trouble walking, contact her primary care provider right away or go to an emergency room.

    If your child has Guillain-Barré, she will probably need to be admitted to the hospital so doctors can help her recover. The disease sometimes does cause life-threatening complications, including serious breathing problems, so the medical team monitors your child closely. However, Guillain-Barré and the possible complications are very treatable, and the vast majority of children recover fully or with only mild long-term weakness.

    Guillain-Barré can affect boys and girls of all ages, although it’s rare in children younger than 6 months. It affects only about one in 100,000 children under age 17.

    Both children and adults can get Guillain-Barré syndrome, although there are some differences in the types of Guillain-Barré that affect children. The disease tends to progress more quickly in children, but children also generally recover more quickly.

    Forms of Guillain-Barré

    There are several different forms of Guillain-Barré that affect children. These include:

    Acute inflammatory demyelinating polyradiculoneuropathy(AIDP) is the most common form of Guillain-Barré. In this form, the covering around peripheral nerve cells, called myelin, is damaged.

    Acute motor axonal neuropathy (AMAN) is a type of Guillain-Barré that involves damage to nerve axons, rather than the myelin coverings around them. This form is fairly rare in the United States; it’s more common in other parts of the world including East Asia. Children with this type usually take longer to recover.

    Miller Fisher syndrome is a very rare form of Guillain-Barré, especially in children. It primarily affects the nerves in the face, so the major symptom is weakness in the face muscles. It also causes decreased reflexes and balance problems.

    Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP)is a different condition that’s similar to Guillain-Barré, but it affects your child for a longer time. Some children who have Guillain-Barré have a relapse months or even years later; if that happens, your child may develop CIDP.

    Symptoms

    Guillain-Barré syndrome can cause muscle weakness, pain and sometimes even temporary paralysis of muscles in the legs, arms, face and chest. The disease starts in a child’s extremities, especially the feet, and then moves toward the body. It’s an acute condition, meaning that it usually affects children for a short time.

    Some of the most common symptoms are:

    • weakness or pain in your child’s legs and arms
    • problems walking
    • pain, numbness (decreased feeling) or tingling in your child’s toes and fingers
    • feeling lightheaded or dizzy
    • weakness in the face
    • breathing problems (in severe cases)

    Guillain-Barré usually develops over the course of just a few days. If your child is having trouble walking, contact her primary care provider right away or go to an emergency room.

    Every child may experience different symptoms. The disease generally starts with weakness or numbness in your child’s feet, then moves up to her legs and hands. If the weakness gets high enough in her body, it can affect the muscles involved in breathing, but this happens only in severe cases. In some cases, it causes weakness in the face.

    These symptoms can be very frightening, and if your child has Guillain-Barré, she will probably need to be admitted to the hospital so doctors can monitor her for serious complications and help her recover. But it’s important to know that children usually get better within a few weeks and are able to go back to school and their normal life quickly.

    Some children do continue to have some weakness or other symptoms long-term. These symptoms may improve over time, or in some cases they may be permanent. The vast majority of children recover fully or with only mild long-term weakness.

    Many children who have Guillain-Barré never have any related problems later in their lives. However, some do have a relapse, which can occur months or even years later. If that happens, your child may develop a more chronic form of the disease, called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).

    Guillain-Barré syndrome is an autoimmune disorder. In autoimmune disorders, the immune system attacks healthy tissues in the body. In Guillain-Barré, the healthy tissues that are being attacked are nerves that carry messages between the brain and the rest of your child’s body, called “peripheral nerves.”

    Peripheral nerves control many parts of the body, including muscles; that’s why your child’s muscles get weak with Guillain-Barré. For example, when muscles in your child’s arms and legs are affected, that makes it hard for her to walk and use her hands. If the disease moves to your child’s chest area, it can affect her heart and breathing.

    In some cases, Guillain-Barré occurs after a mild viral or bacterial infection. Occasionally, it can occur after an immunization. Often, however, there is no known trigger.

    Experts believe that the reason why infections can trigger autoimmune conditions such as Guillain-Barré is that when the immune system goes to work attacking the invading viruses or bacteria, it can occasionally also attack healthy tissue.

    Although some vaccines have been associated with Guillain-Barré in the past, this is extremely rare. It’s very unusual for a child to need to avoid immunizations because of the risk of Guillain-Barré unless she has an underlying neuropathy or she’s had an acute neuropathy such as Guillain-Barré before. If you have any concerns about vaccines, talk with your child’s pediatrician. You may also find our Immunizations page or this Q&A from the Centers for Disease Control and Prevention (CDC) helpful.

    FAQ

    Q: What is Guillain-Barré syndrome?

    A:Guillain-Barré is an acute (short-term) autoimmune disorder that affects nerves outside the brain and spinal cord, called “peripheral nerves.” It can cause muscle weakness, pain and sometimes temporary paralysis of muscles in the legs, arms, face and chest. If your child’s chest muscles are severely affected, it can cause breathing problems. The disease starts with weakness or numbness in your child’s extremities, especially the feet, and then moves toward the body.

    Both children and adults can get Guillain-Barré syndrome, although there are some differences in the types of Guillain-Barré that affect children. The disease tends to progress more quickly in children, but children also generally recover more quickly.

    Q: Is it an emergency?

    A: Yes, it can be. Guillain-Barré usually develops over the course of just a few days and can cause life-threatening complications. So if your child is having trouble walking, contact her primary care provider right away or come to an emergency room. If your child has Guillain-Barré, she will probably need to be admitted to the hospital. 

    Q: Do children recover from Guillain-Barré?

    A: Yes. The disease is very treatable, and the vast majority of children recover fully or with only mild long-term weakness. Guillain-Barré starts quickly, but it also generally resolves quickly, so children usually get better within a few weeks and are able to go back to school and their normal life quickly.

    Q: What causes Guillain-Barré? How common is it?

    A: Guillain-Barré is an autoimmune disorder in which your child’s immune system attacks healthy nerves that carry messages between her brain and the rest of her body. These nerves control many parts of the body, including muscles; that’s why muscles get weak with Guillain-Barré. Often, there’s no known reason for why a child’s immune system started attacking her own healthy tissues. Sometimes, the disease seems to be triggered by an infection, and in rare cases it can occur after an immunization.

    Guillain-Barré is extremely rare: It affects only about one in 100,000 children. So there’s no reason to worry that if your child has an infection, she’s going to get Guillain-Barré. Likewise, it’s very unusual for a child to need to avoid immunizations because of the risk of Guillain-Barré. If you have any concerns about vaccines, talk with your child’s pediatrician. You may also find our Immunizations page or this Q&A from the Centers for Disease Control and Prevention (CDC) helpful.

    Q: How is Guillain-Barré diagnosed?

    A: A doctor diagnoses Guillain-Barré based on your child’s symptoms and the results of one or more tests, which can include lumbar puncture (spinal tap) and electromyography and nerve conduction studies (EMG testing). In some cases, doctors use magnetic resonance imaging (MRI).

    Q: What therapies are used to help children with Guillain-Barré recover?

    A: The major treatments for Guillain-Barré are therapies to help your child’s immune system go back to functioning normally. Depending on your child’s particular situation, her medical team may use one of two therapies:

    • plasmapheresis (plasma exchange), a procedure in which your child’s blood is processed to remove abnormal antibodies
    • intravenous (IV) administration of immunoglobulin, a blood product pooled from multiple donors that contains normal antibodies (often called IVIG)

    Your child’s team will also monitor her body functions, such as her blood pressure, heart rate and breathing. Depending on her particular situation, she may need other tests or treatment while she’s in the hospital. In the most severe cases, Guillain-Barré can affect the muscles needed for breathing. If that’s the case for your child, she may need to be admitted to the intensive care unit (ICU) and placed on a ventilator (breathing machine) until she’s able to breathe on her own again.

    After your child leaves the hospital, she may need physical or occupational therapy to help her regain muscle strength and get back to using her arms and legs as she did before.

    Q: Does Guillain-Barré come back?

    A:Many children who have Guillain-Barré never have any more problems from it later in their lives. However, some children do have a relapse, which can occur months or even years later. If that happens, your child may develop a more chronic form of the disease, called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).

    Questions to ask your doctor

    You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s medical team and that you, in turn, understand their recommendations and any treatment options they may present to you.

    If your child is being treated for Guillain-Barré, you probably have a lot of questions on your mind. But when you’re talking with your child’s doctor, it can be easy to forget the questions you wanted to ask. So it’s often helpful to jot them down as you think of them. You may also want to help your child make a list of things she wants to ask, too.

    Some of the questions you may want to ask include:

    • Why did you make the diagnosis of Guillain-Barré? Are there other possibilities?
    • What could have caused this?
    • Does my child need any tests? What’s going to happen during the tests?
    • Does she have to be admitted to the hospital? What kind of monitoring and treatment is she going to have while she’s in the hospital?
    • What kind of symptoms could she develop?
    • How long do you think it’s going to take for her to get better?
    • How do you think this is going to affect her long-term?
    • Could my child have a relapse? What symptoms should we be watching for? What do we do if she has those symptoms?
  • The key to managing Guillain-Barré syndrome is to diagnose it early so that your child can get the care she needs.

    Guillain-Barré is diagnosed based on your child’s symptoms and the results of some specific tests. A pediatrician or pediatric neurologist will examine your child, review her medical history and talk with you and your child about her symptoms.

    There are three tests that the doctor may use to help diagnose Guillain-Barré:

    • lumbar puncture (spinal tap): A special needle is placed into your child’s spinal canal (the area around the spinal cord) in her lower back, and a small amount of cerebrospinal fluid (CSF) is removed. (CSF is the fluid that bathes the brain and spinal cord.) Doctors test the fluid sample for signs of inflammation.
    • electromyography and nerve conduction studies (EMG testing): These tests measure the electrical activity of nerves and muscles.
    • magnetic resonance imaging (MRI): This test may be used to get a picture of your child’s spine. It’s used less frequently than lumbar puncture and EMG in diagnosing Guillain-Barré. However, if for some reason it’s not possible to do one of the first two tests, doctors make take an MRI of your child’s spine.

    We work to get the most accurate information we can so that we can diagnose your child’s condition accurately and get her the treatment she needs. At the same time, we never forget that your child is a child, and not just a patient. The technologists and physicians at Children’s Hospital Boston who perform these tests specialize in working with children; they’ll talk with you, explain the test to your child and make her as comfortable as possible.

    These tests are usually done without sedation or anesthesia. Sometimes, however, anesthesia may be needed. In all cases, we’ll work closely with you and carefully consider what’s best for your child.

    Diagnostic labs that are just for kids

    Our patients are able to get the tests they need at labs that are designed just for children and adolescents. In particular, Children’s houses a full-service electromyography (EMG) laboratory that is entirely dedicated to pediatric testing. Tests like these can often seem scary to children, but with compassionate doctors and technologists who are experienced in working with kids, it’s usually not so bad.

  • If your child has Guillain-Barré syndrome, she will probably need to be admitted to the hospital so that we can monitor her for serious complications and help her recover. The disease is very treatable, and the vast majority of children recover fully or with only mild long-term weakness. Most children are able to go home from the hospital within a week.

    Immune system treatments

    The major treatments for Guillain-Barré are therapies to help your child's immune system go back to functioning normally. We usually treat children with one of two types of therapies:

    Plasmapheresis (plasma exchange)is a procedure in which your child's blood circulation is connected to a machine that processes her blood:

    • Blood is temporarily removed from your child's body.
    • Abnormal antibodies are removed from her blood and discarded.
    • The filtered blood is returned to her body along with albumin or plasma from blood donors.

    In older children and teenagers, plasmapheresis can often be done through a standard intravenous (IV) line. For young children (who have smaller veins), we have to use a central line, which may need to be placed in the operating room.

     Immunoglobulin is a blood product pooled from multiple donors that contains normal antibodies. The immunoglobulins are infused through an IV line into your child's veins. This therapy is often called IVIG.

    Giving your child one of these treatments to help her immune system is a key part of helping her recover from Guillain-Barré. Both of these treatments can cause some side-effects, so we monitor your child closely.

    • With plasmapheresis, the main possible side-effect is that it could make your child's blood pressure unstable. This is generally managed by taking measures such as slowing down the treatment or giving your child IV fluids.
    • With IVIG treatment, there's a risk that your child will have an allergic reaction to the immunoglobulins. This can make your child feel sick for about a week, with symptoms like headaches, nausea and vomiting.

    For children with the related condition chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), corticosteroids are an effective treatment. However, research has shown that these medications are not helpful for children with Guillain-Barré.

    Supportive treatments

    Your child's medical team closely monitors her blood pressure, heart rate and breathing. Depending on her particular situation, she may need other tests or treatments while she's in the hospital.

    • If your child's blood pressure is fluctuating, her medical team may perform an echocardiogram or electrocardiogram (EKG) to monitor her heart.
    • In the most severe cases, Guillain-Barré can affect the muscles needed for breathing. If that's the case for your child, she may need to be admitted to the intensive care unit (ICU) and placed on a ventilator (breathing machine) until she's able to breathe on her own again.
    • If your child has pain, medications may be used to control the pain.

    What follow-up care will my child require?

    After your child goes home from the hospital, she will need to have follow-up evaluations. If she's treated at Boston Children's Hospital, she'll be seen by one of the neurologists in our Neuromuscular Program. If you child is recovering well, she may only need to come for one or two appointments.

    Often, children recovering from Guillain-Barré need physical or occupational therapy after they leave the hospital to help them regain muscle strength and get back to using their arms and legs. Your child may be able to get this therapy as an outpatient—either in the Children's Physical Therapy Department and Occupational Therapy Serviceor at a facility in your community—or she may need to spend a short time at a rehabilitation facility.

    Whatever follow-up care your child needs, we'll talk with your family in-depth about what the next steps are and help make the transition out of the hospital as smooth as possible.

    We know that Guillain-Barré can be a scary disease—it's terrifying to see your child get such serious symptoms so suddenly. If this has happened to your child, the question on your mind is probably: Is my child going to be OK?

    The answer is almost always yes, but that doesn't mean that your family doesn't need some help along the way. At Children's, you'll work with a team of professionals who are committed to supporting you. Your child's medical team will talk with you and discuss any questions you have. There are also a variety of resources at Children's to help you and your family through this difficult time:

    Patient education: Our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you receive while you're at Children's.

    Parent to parent: Want to talk with someone whose child has been treated for Guillain-Barré? We can often put you in touch with other families who've been down a similar road and can share their experience.

    Faith-based support: If you and your family find yourselves in need of spiritual support, we can 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 treatment 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 stresses related to your child's illness, dealing with financial difficulties, and finding temporary housing near the hospital if your family is traveling to Boston from another area.

    Visit the Children's For Patients and Families site to read all about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
      Helping Your Child with Medical Experiences: A Practical Parent Guide

      Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (pdf) and read about topics including: 

      • talking to your child about her condition
      • supporting siblings
      • taking care of yourself during your child's illness
      • adjusting to life after treatment

       

  • At Children’s Hospital Boston, our team is experienced in recognizing the signs of Guillain-Barré so that we can make an accurate diagnosis, and then providing expert monitoring and treatment for your child.

    Our physicians, nurses and technologists know that providing the best possible care for your child means not only getting accurate data from a diagnostic test or providing the right treatment: It also means treating your child with compassion. Because we’re dedicated to treating children and teenagers, we have the expertise it takes to help your child feel at ease throughout her time in the hospital.

    Especially unusual is the fact that our electromyography (EMG) laboratory is just for kids. That means that our physicians and technologists are experienced in working with children, putting them at ease and making them as comfortable as possible.

    Children’s also has a wealth of professionals—like our Child Life specialists, Clown Care performers and social workers—who can help make your child’s hospital stay easier for both her and your whole family. Visit the Family resources tab of Children’s For Patients and Families site to learn more about these and other programs.

Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

Patient Information
Date of Birth:
Contact Information
Appointment Details
Send RequestIf you do not see the specialty you are looking for, please call us at: 617-355-6000.International visitors should call International Health Services at +1-617-355-5209.
Please complete all required fields

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

Thank you.

Your request has been successfully submitted

You will be contacted within 1 business day.

If you have questions or would like more information, please call:

617-355-6000 +1-617-355-6000
close
Find a Doctor
Search by Clinician's Last Name or Specialty:
Select by Location:
Search by First Letter of Clinician's Last Name: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
BrowseSearch
Condition & Treatments
Search for a Condition or Treatment:
Show Items Starting With: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
View allSearch
Locations

Contact the Neuromuscular Program

  • 1-617-355-8235

Related Conditions

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
Close