Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.

It’s also called:

Acute Inflammatory Demyelinating Polyneuropathy

Landry’s Ascending Paralysis

GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.

What causes GBS?

The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning.  Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.

How is GBS diagnosed?

To confirm a diagnosis, two tests may be performed:

A lumbar puncture looking for elevated fluid protein

Electrical test of nerve and muscle function

How is GBS treated?

GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks.

Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.

Variants

There are many variants of GBS, but they all share the characteristic of being ‘rapid onset’:

Acute Inflammatory Demyelinating Polyneuropathy (AIDP) 75% – 80% of cases fall into this ‘classic’ category

Acute Motor Axonal Neuropathy (AMAN) Similar to AIDP, but without sensory symptoms

Acute Motor Sensory Axonal Neuropathy (AMSAN) Severe variant of GBS more prevalent in Asia, Central America, and South America

Miller Fisher Syndrome Characterized by double vision, loss of balance, and deep tendon reflexes

Living with GBS

Recovery may occur over six months to two years or longer. A particularly frustrating consequence of GBS is long-term recurrences of fatigue and/or exhaustion as well as abnormal sensations including pain and muscle aches. These can be aggravated by ‘normal’ activity and can be alleviated by pacing activity and rest.

No one can prepare you for this

What you can do

Get support for yourself. It’s important that your help comes from a healthy physical and emotional place. This is not an easy journey for either of you. Asking for and accepting help is one of the most difficult (and important) things a caregiver can do before reaching burnout. Don’t let it reach that point if you can. Many hospitals have social workers on staff to help.

Take care of yourself. There is a good reason that airlines ask caregivers to put their oxygen masks on first in case of an emergency. Make sure you are eating well and getting enough sleep. Your self-care will fuel you to be available for the patient.

Become familiar with GBS. Knowledge is power. Though debilitating, this is a disease that has specific stages. It’s very helpful to know that the acute phase, however frightening, is temporary. Ask a lot of questions. The patient will be assured that you know what is going on with the disease as well as treatment and can act as an advocate.

Contact your local GBS/CIDP chapter. One of the most powerful things you can provide for the patient is a visit from a survivor. Speaking with another human being who has experienced the pain and the paralysis, yet walks into a hospital room with a smile is extremely reassuring.

Be with the patient as much as possible. Losing control of oneself is a frightening experience, and a steady source of encouragement and support is very helpful for the patient. Bring your outside life in—work on a project of any kind in the hospital—knit, write, organize photos, pay bills, read out loud, blog, or bring in news and well wishes from other friends/relatives.

Find a way to communicate. If the patient is on a ventilator, speaking is impossible. Not being able to communicate needs is frustrating. The Foundation has a set of “communication cards” designed by a GBS patient/doctor (contact the Foundation to order the cards). Other options may be available in the hospital.

Listen. This situation is new and frightening to the patient. All feelings are okay. Anger, fear, and depression are all normal reactions to a sudden, debilitating disease.

Bring ‘home’ to the hospital. Photos of loved ones or a favorite painting can provide a sense of belonging. Watching movies and listening to favorite music or books on tape can provide a welcome respite from the realities of living through the acute phase of GBS.

Children with GBS

When a child has GBS the entire family is affected. Parents’ attitudes towards the patient and the illness will trickle down to every family member. This is the time to gather information and remain on the positive side of honesty.

Although it’s a long and painful process, 80% to 90% of patients recover completely. Study after study on recovery (from any kind of illness) show that a positive attitude contributes greatly to the outcome.

All of the general caregiver advice applies here, plus additional strategies to maintain as much of a ‘normal life’ as possible for the patient and siblings in the family.

What you can do

Maintain the general routine as much as possible. It’s important to communicate to the patient and their siblings that life goes on, that this illness is a bump in the road and not a dead end.

Maintain rules and responsibilities. Do not excuse a child recovering from GBS from responsibilities if they are capable. Revise expectations, but being a part of a family means helping in some way. A recovering child maintains a sense of belonging and usefulness when he or she can contribute.

Answer questions based on fact. Young children can make up reasons for the illness that exist in the magical realm. Children may believe that their comments or actions can be connected to the cause of the disease. That said, the reality of the disease will bring up feelings and questions to be addressed. Every feeling that a child has should be discussed and acknowledged.

Involve siblings in the recovery process. Siblings can help with homework, physical therapy, and making accommodations for the patient. Be careful not to rely too much on siblings – their experience of childhood is equally important.

Allow the patient to participate in medical decisions. Giving choices to a child develops responsibility and reasoning skills. If a child can handle it, participating in treatment choices can be extremely beneficial to their emotional development. Scheduling decisions, describing physical sensations to doctors and nurses, learning to adjust to social interactions, learning to communicate their limitations to friends, and making accommodations in the home and at school – all of these can be a discussion with the patient, giving them a sense of power in a powerless situation.