Guillain Barre Syndrome Symptoms & Causes in Children

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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 of Guillain Barre Syndrome

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 this Q&A from the Centers for Disease Control and Prevention (CDC) helpful.

Frequently Asked Questions (FAQ) about Guillain Barre Syndrome

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. 

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?
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