What is Guillain-Barré syndrome in children?

Guillain-Barré syndrome (GBS) is a short-term but often life-threatening disorder that affects the nerves in the body. GBS can cause muscle weakness, pain, and short-term (temporary) paralysis of the muscles in the face, chest, leg, and those used to swallow. Paralyzed chest and swallowing muscles can lead to breathing problems, choking, and death if not treated. Most children diagnosed with GBS recover fully with no complications. Recovery often starts within a few weeks after the symptoms begin.

What causes GBS in a child?

Researchers don’t know the exact cause of GBS. GBS is an autoimmune disorder that causes the body's immune system to attack part of the nervous system. This can occur after a viral infection, surgery, injury, or, very rarely, as a reaction to a vaccine. About 2 out of 3 people who develop symptoms of GBS do so a few days or weeks after diarrhea or a respiratory illness.

Which children are at risk for GBS?

GBS is rare, but any child can develop it.

What are the symptoms of GBS in a child?

Symptoms can occur a bit differently in each child. They can include:

• Decreased feeling in fingers and toes

• Pain in fingers and toes

• Leg weakness

• Leg pain that moves to the arms

• Problems walking

• Irritability

• Breathing problems

• Trouble swallowing

• Facial weakness

• Vision changes

Your child may have muscle weakness for several weeks. How fast your child recovers depends on how serious the nerve damage is. Typically, this can last up to 1 to 2 months. Full recovery may take 1 to 2 years after diagnosis.

The symptoms of GBS can be like other health conditions. Have your child see their healthcare provider for a diagnosis.

How is GBS diagnosed in a child?

The healthcare provider will ask about your child’s symptoms and health history. They will give your child a physical exam. Your child may also have tests, such as:

• Blood tests and urine tests. These are done to check for infections and other problems.

• Spinal tap (lumbar puncture). This test uses a needle to help measure the pressure in the spinal canal and brain. The healthcare provider can also remove a small amount of cerebrospinal fluid (CSF) to send for testing. CSF is the fluid that surrounds your child's brain and spinal cord. The fluid sample can help show if your child has an infection or other problems.

• Electromyogram (EMG) and nerve conduction studies. These tests measure the electrical activity of nerves and muscles. An EMG can find abnormal electrical muscle activity caused by diseases and conditions that affect the nerves and muscles.

• Pulmonary function test. This is a breathing test done by a respiratory therapist. It shows your child’s lung capacity and how strong their respiratory muscles are. This test is often used to decide if a child needs breathing support with a ventilator.

How is GBS treated in a child?

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on how severe the condition is.

There is no treatment to cure GBS. The key to managing GBS is finding it early. This condition can go away on its own, but it can be life-threatening. Certain treatments can speed up recovery. But early detection is needed. A child with GBS will often need to be in a hospital intensive care unit (ICU) and closely watched by a healthcare team.

The goal of treatment is to prevent breathing problems and ease symptoms. Medicines are used to control pain and other problems. In severe cases, your child may need to be on a breathing machine (ventilator) until their strength gets better.

Your child may also need treatment to suppress the immune system or reduce inflammation. This may include:

• Immunoglobulin therapy. This is treatment with a blood product that helps to decrease the immune system's attack on the nervous system.

• Plasmapheresis. This is a procedure to remove the fluid part of the blood (plasma) and replace it with other fluids. Antibodies are also removed with the plasma. This may help reduce the symptoms of the disease. Plasmapheresis is a complex procedure that can be hard to do on young children.

Usually, only one of the above treatments is given. Immunoglobulin therapy is generally used in children since it is not as difficult to do. Plasmapheresis can remove immunoglobulin from the blood, so it is recommended that there should be a several-day delay if it is done after immunoglobulin therapy. Talk with your child’s healthcare providers about the risks, benefits, and possible side effects of all treatments.

During the course of the illness, your child may develop weak and atrophied muscles and contracted joints. They may need physical, occupational, or speech therapy during recovery. This is to help them regain muscle strength, and speech and swallowing skills.

The healthcare team will tell you how to best care for your child at home. Make sure your child gets enough rest and activity. Your child will also likely need regular visits with the healthcare provider after they get home from the hospital. If your child is school-age, contact the principal so that, as your child gets better, they can get homeschool support.

What are possible complications of GBS in a child?

Most children diagnosed with GBS recover fully with no complications. If GBS is not treated, paralysis of the chest muscles can lead to breathing problems and death. Recovery often starts within a few days to weeks after the onset of symptoms. Your child may have muscle weakness for weeks to months. This can last up to 1 to 2 months, with full recovery sometimes 1 to 2 years after diagnosis. In severe cases, some symptoms may never go away.

When should I call my child’s healthcare provider?

Call the healthcare provider if your child has:

• Symptoms that don’t get better, or get worse

• New symptoms

Key points about Guillain-Barré syndrome in children

• Guillain-Barré syndrome (GBS) is a short-term but often life-threatening disorder that affects the nerves in the body. It is rare but can affect any child.

• Researchers don’t know the exact cause of GBS. It is an autoimmune disorder that causes the body's immune system to attack nerve cells. This can occur after a viral infection, surgery, injury, or, very rarely, as a reaction to a vaccine. Most children who develop GBS do so a few days or weeks after diarrhea or a respiratory illness.

• GBS can cause muscle weakness, pain, and short-term paralysis of the muscles in the face, chest, leg, and those used to swallow. Your child may have less feeling or pain in fingers and toes, and weakness in arms or legs. Paralyzed chest and swallowing muscles can lead to breathing problems, choking, and death if not treated.

• There is no treatment to cure GBS. It may go away on its own but can be life-threatening. Treatment with plasma exchange or with intravenous immunoglobulin (IVIg) can shorten the time it takes to recover. A child with GBS may need to be in a hospital intensive care unit (ICU) and closely watched by a healthcare team.

• Most children diagnosed with GBS recover fully with no complications. Recovery often starts within a few days to weeks after treatment is started.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your healthcare provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are and when they should be reported.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s healthcare provider after office hours. This is important if your child becomes ill and you have questions or need advice.