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There are many ways you can help children and their families get the care they need.
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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.
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:
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.
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.
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.
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 Center. 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 Boston 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 Boston 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 Boston 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 Boston 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 Boston 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 Boston Children's For Patients and Families site to read all about:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”