KidsMD Health Topics

Encephalitis

  • Children with encephalitis may benefit from the brain's plasticity during the childhood years. This means that often when one area of a child's brain is damaged, a different area of the brain can take on that function.

    Ariane Soldatos, MD, Boston Children's Hospital

    There’s a lot of information on the Internet about encephalitis—much of it misleading. People often hear "encephalitis" and think virus—particularly West Nile virus. But encephalitis (inflammation of the brain) actually has a wide range of causes, levels of severity, treatment options and outcomes.

    Encephalitis is a rare neurological condition that often comes on suddenly. Encephalitis means that brain tissues have become inflamed. When brain tissues are inflamed it can cause your child to have seizures, mental confusion or changes in behavior.

    • Cases of encephalitis can range from mild to severe, with a range of physical, behavioral and neurological outcomes.
    • It may take several months for the full effects of a child’s encephalitis to become clear.
    • Some children respond very well to treatment; others have epilepsy and long-term school or learning issues.
    • Although encephalitis can be life-threatening in its most severe form, this is rare.
    • Physical, speech, and occupational therapy can be very helpful in helping your child recover from encephalitis.

    How Boston Children’s Hospital approaches encephalitis

    Boston Children’s Pediatric Neuro-immunology Program is dedicated to the comprehensive care of children, adolescents and families who are affected by encephalitis. Our team includes pediatric neurologists and neuropsychologists, and we consult with pediatric specialists in rheumatology, infectious diseases and epilepsy when it’s beneficial.

    Here, your child benefits from the expertise of a main referral center for pediatric encephalitis in New England. We also have strong ties to the small network of physicians and researchers all over the country who are working to better understand, diagnose and treat this extremely rare condition.

    Our program is part of the Department of Neurology at Boston Children's, the oldest and largest program in pediatric neurology in the world.

    Spotlight: Top ranking
    Boston Children's Hospital has been ranked #1 in Neurology and Neurosurgery by U.S. News & World Report in 2010.

    Encephalitis: Reviewed by Ariane Soldatos, MD and Mark Gorman, MD
    © Children’s Hospital Boston, 2010

     

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    Boston Children's Hospital
    300 Longwood Avenue
    Fegan 11
    Boston MA 02115
     617-355-2751
     fax: 617-730-0285


  • We understand that you may have a lot of questions when your child is diagnosed with encephalitis:

    • What is it?
    • Will my child need to be hospitalized?
    • How will it affect my child long term?

    We’ve provided some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and options fully.

    What is encephalitis?

    Encephalitis simply means that the brain tissues have become inflamed. When brain tissues are inflamed, they don’t work properly, which is why your child may experience seizures, mental confusion or changes in behavior.

    Why is encephalitis a concern?

    Infection or inflammation in the brain can lead to permanent damage. Unfortunately, there’s no way to predict the long-term effects of encephalitis. Some children have lots of serious symptoms but respond very well to treatment; others have milder cases but have epilepsy and more long-term learning issues.

    Why is encephalitis hard to diagnose?

    Encephalitis can be hard to diagnose because it’s a reaction to something, in the same way that a bruise is a reaction to an injury. Often, we may find a bruise and not know what caused it; the same is true for encephalitis.

    Another reason is that the absolute best way to determine what causes encephalitis is a brain biopsy. But since this is an extremely invasive procedure, it’s usually only used in very severe cases. Instead, we do other tests, such as a spinal tap, which may or may not pick up on a virus in a brain cell.

    Can encephalitis be prevented?

    Some forms of encephalitis are transmitted through mosquito bites, and we can prevent those forms by preventing mosquito bites. You and your child can help protect yourselves from mosquito bites by:

    • wearing long sleeves, long pants and socks when outside
    • using bug spray
    • wearing light-colored clothing (mosquitoes are attracted to darker colors)
    • avoiding areas of standing water, like ponds, wells and birdbaths (this is where mosquitos lay their eggs)

    Causes

    What causes encephalitis?

    Encephalitis means that the brain tissue has become inflamed, and this can be caused by different things.

    1. It can be the normal (and healthy) reaction of the body to a viral or bacterial infection.
    2. It can be the immune system over-reacting to an infection that might not even be still present in the body.
    3. It can have an auto-immune cause (the body’s immune cells become confused and start to attack healthy tissue), and occur without an infection of any kind.

    Where you live might also play a role. For example, in New England, the West Nile virus is the most common mosquito-born viral cause of encephalitis.

    1. Viruses and other infectious agents

    There are some viruses that we know can cause encephalitis:

    • herpes simplex virus – This is a common cause of encephalitis. Most children have been exposed to this virus, and your child may be infected with it even if she does not have a cold sore or blister around her mouth, or other sign of the virus.
    • enteroviruses – These viruses enter the body through the gastrointestinal tract, and can also cause hand-foot-mouth disease
    • measles, mumps, rubella and chickenpox viruses – Keeping your child up-to-date with her vaccinations greatly lowers the rate of encephalitis from these viruses.

    Other times, we may find signs in your child’s blood or spinal fluid (such as an increased white blood cell count) that her body is battling a virus or other infection that may be causing the encephalitis, even if we don’t know which particular one it is.

    Encephalitis can also occur following infection by agents carrying diseases, including ticks (Lyme disease), mosquitos (West Nile virus), and cats (Bartonella, otherwise known as “cat-scratch disease”) or other animal exposures, environmental exposure such as swimming in fresh-water bodies, or travel to certain regions.

    2. Non-infectious causes

    In the past, physicians assumed that if we couldn’t identify the cause of a case of encephalitis, the cause must be a virus that we weren’t able to detect. But now we recognize that encephalitis can also be caused by over-activity of your child’s immune system in a way that may not have been triggered by a virus.

    It’s important to remember that the severity of symptoms has nothing to do with the cause, and two people might have equally severe cases of encephalitis caused by different factors.

    Symptoms

    Your child’s symptoms may depend on her situation—the part of the brain that is inflamed, the cause of the inflammation, the degree of inflammation, her age and other medical problems she may have. But even children in the same situation may show symptoms differently. Some of the most common symptoms of encephalitis may include:

    • fever
    • headache
    • sensitivity to light
    • neck stiffness
    • skin rashes
    • nausea/vomiting
    • loss of energy/appetite
    • changes in alertness (sleepiness)
    • confusion or hallucinations
    • difficulty talking
    • problems walking
    • seizures

    Since encephalitis is often caused by a virus, you may notice symptoms appear alongside or following other symptoms of a virus, such as an upper respiratory infection (like a cold, sore throat), or a gastrointestinal problem like diarrhea, nausea, vomiting or rash.

    FAQ

    Q: Will my child be okay?
    A: Encephalitis is rarely fatal for children in the United States. It’s impossible to predict how well your child will do, however, since some children with severe cases may do quite well, whereas children with mild cases may have ongoing difficulties with seizures and/or cognitive/behavioral impairments.

    Q: Is encephalitis contagious?
    A: No, but it may be caused by a contagious virus. If your child catches the same virus that a child with encephalitis caught, she may show the signs of a cold or flu, but it’s unlikely that she’ll develop encephalitis, too.

    Q: Can encephalitis be prevented?
    A: Sometimes encephalitis can be caused by a mosquito-borne infection, and preventing mosquito bites prevents these types of encephalitis. Consider:

    • wearing long sleeves, long pants and socks when outside
    • using bug spray
    • wearing light-colored clothing (mosquitoes are attracted to darker colors)
    • avoiding areas of standing water, like ponds, wells and birdbaths (this is where mosquitos lay their eggs

    Q: Will my child be hospitalized?
    A: Most children with encephalitis are hospitalized for at least a couple of days, but some require much longer hospital stays. Here at Boston Children’s, we have a “neurology step-up unit,” where your child can receive additional specialized care from nurses trained in caring for children with neurological disorders if needed after she leaves the emergency room or the intensive care unit, and before she transfers to the general neurology inpatient unit. And after their immediate medical needs are resolved, many children will spend some time in an inpatient rehabilitation facility where they’ll receive intensive therapies such as speech therapy, occupational therapy and physical therapy as needed.

    Q: When will we know the full effects of my child’s encephalitis?
    A: It’s hard to say because each child and each situation is different. It may take a few months for the brain to heal, although some children recover much more quickly. Generally, once your child’s condition is stabilized, there’s a lot of hope for potential for ongoing improvement. Your child’s outpatient neurologist will follow her closely to monitor this.

    Questions to ask your doctor

    If your child is diagnosed with encephalitis, you probably have a lot of questions. Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

    If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

    • Could something other than encephalitis be causing my child’s symptoms?
    • What caused my child’s encephalitis?
    • What is the treatment plan for my child?
    • What signs of an emergency should I watch for, and who should I contact if I see them?
    • What resources are available to help me and my family?

    While much remains unknown about this condition, we’ll do everything we can to answer your questions.

    Spotlight on: Child Life specialists
    "Don't forget to tell them the rules," 7-year-old Lia DiFronzo says to Amber Soulvie, her Child Life specialist. Read more about how our Child Life specialists help children like Lia.
  • The first step in treating your child is forming an accurate diagnosis. Many children come to our Neurology team after they’ve been brought to the emergency room because they’ve had changes in their cognition and/or behavior and a fever, with or without seizures. We’ll take a complete medical history of your child, including her immunization history, and ask whether she has been involved in any activities or been anywhere where she may have been exposed to viruses known to cause encephalitis. Your child’s doctor may also ask if your child has recently:

    • had a cold or other respiratory illness, or a gastrointestinal illness
    • had a tick bite
    • been around pets or other animals
    • traveled to certain areas of the country or outside of the country

    This information can provide clues as to what might be causing your child’s symptoms. Some of the procedures we use to diagnose encephalitis include:

    • a CT scan of the brain, to make sure that the symptoms aren’t caused by another cause. This diagnostic test uses x-rays and computer technology to produce detailed, cross-sectional images.
    • a lumbar puncture (spinal tap) to take a small sample of spinal fluid to look for infections, like bacteria and viruses
    • an electroencephalogram (EEG) to see if your child is having subtle underlying seizures - small seizures in her brain that may not be obvious just by looking at her. This is a painless procedure that records the brain's continuous, electrical activity using stickers attached to the scalp that measure electrical activity.
    • magnetic resonance imaging (MRI) to look at detailed images that can show inflammation in the brain.
    • blood, urine and stool tests to check for indications of infection
    • In extremely rare cases, we may recommend that we take a sample of your child’s inflamed brain tissue through a small biopsy. The sample will be studied under the microscope by a pathologist to see whether the underlying cause can be found, and this may help guide treatment decisions for your child.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we’ll meet with you and your family to discuss the results and the best treatment options. You’re always encouraged to ask any questions you have.

  • You may have heard that encephalitis can be challenging to treat. Unfortunately, that's true. But the dedicated, compassionate staff at Boston Children's Hospital is incredibly well-qualified to care for your child. We're known for our science-driven approach – we're home to the most extensive research enterprise located in a pediatric hospital in the world, and we partner with a number of top biotech and health care organizations – but our physicians never forget that your child is a child, and not just a patient.

    The key to treating encephalitis is early detection and treatment. Your child will spend some time in the hospital so we can treat her and monitor her closely. Most children who are diagnosed with encephalitis are hospitalized for two weeks to a month, and sometimes children with severe cases spend time in the intensive care unit (ICU).

    The first step in caring for your child is to stabilize her medical condition and try to figure out what caused the condition. Your child's doctor may order a lumbar puncture to look for evidence of things that we can treat, such as bacteria and viruses.

    While your child's team is working to determine the cause of the encephalitis, she'll be treated for two to three days with intravenous (through an IV) medications to fight certain bacteria and the herpes simplex virus while we wait for the results from the lab, as a precautionary measure. If an EEG reveals that your child is having seizure activity in her brain, we can treat it with anti-seizure medications.

    If your child's encephalitis has an auto-immune cause, we'll talk with you about treating her with a course of immunosuppressants (these may include high-dose steroids, intravenous antibodies (IVIg), or plasmapheresis, a process that filters your child's blood). While most children with this type of encephalitis only need a single course of immunosuppressants, some children may need to stay on them for a longer period of time.

    We do everything possible to try to figure out the cause of the encephalitis, but unfortunately, there often isn't a cause that we can pinpoint and treat. In these cases, we focus on preventing related complications, often through medication, while your child's brain recovers from the inflammation.

    Our team will teach you and your family how to best care for your child when she comes home from the hospital, and we'll talk with you about specific things to look for that require immediate medical attention. Someone from the Neurology team will always be available to discuss your concerns.

    Recovery

    Most children with encephalitis will experience some degree of recovery within a month, but it's difficult to predict how much and how quickly a child's recovery will go. Some children may have seizures and problems walking and talking; others may just experience memory and concentration difficulties and need extra help in school. It may take several months for the full effects of your child's encephalitis to become clear.

    Children who show severe cognitive or behavioral difficulties usually spend time in an inpatient rehabilitation center after their immediate medical issues have been resolved, often for at least one month. Here, they have access to daily intensive speech therapy, occupational therapy and physical therapy.

    If your child doesn't show these severe difficulties, or she is thought to no longer need intensive daily therapy, outpatient physical, occupational or speech therapy can help her regain muscle strength and/or speech skills.

    As your child continues to recover, she'll have ongoing follow-up visits with her neurologist (either here at Boston Children's, or if you live far away, you might see one closer to home). We ask that you bring your child back for a follow-up within a month after she comes home from the hospital. Then, if she's doing well, her doctor may schedule follow-up visits every three or six months.

    What are some common after-effects of encephalitis?

    Many children who have had encephalitis continue to have seizures and need extra help in school. When your child comes in for her follow-up appointment, her doctor may do some blood tests if she is taking anti-seizure medications. We recommend that your child get a neuropsychological evaluation to further evaluate any learning difficulties so she can get the appropriate help in school as early as possible.

    When should I seek further medical treatment for my child?

    Be on the lookout for any change in your child's new neurological baseline after she leaves the hospital. For example, if she was able to walk a certain distance or speak a certain number of words and is no longer able to do so, she should be evaluated. We recognize that as a parent, you're the expert when it comes to your child, so don't hesitate to contact us with any concerns that you have.

    Going back to school

    Since having had inflammation in the brain can make it harder to process things quickly, many children who have had encephalitis require extra help when they return to the classroom. Your child has a right to an Individualized Educational Program (IEP). This document describes how she learns and outlines ways that teachers can help her succeed. With an IEP, the school will provide the resources your child needs, whether it's extra time on tests, more one-on-one time with the teacher, or extra tutoring.

    Even if your child appears to be doing well in school, remember that learning difficulties sometimes don't show up until schoolwork becomes more challenging. Your child may be struggling and feeling frustrated, and the earlier you detect and pinpoint an issue with learning, the easier it is to find ways to optimize your child's learning style and get her the support she needs.

    Coping and support

    We know how difficult a diagnosis of encephalitis can be, both for your child and for your whole family. That's why our physicians are focused on family-centered care: from your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs.

    • Patient education: From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.
    • Parent to parent: Want to talk with someone whose child has had encephalitis? We may be able to put you in touch with other families who have been through similar experiences and can share their experience.
    • Faith-based support: If you are in need of spiritual support, we'll help 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 child's hospitalization.
    • 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 coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Boston Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
    Spotlight: “Helping Your Child with Medical Experiences: A Practical Parent Guide”
    Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (please note that Adobe Acrobat is required) and read about topics including:
    • talking to your child about his condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment
  • At Boston Children’s Hospital, we’re known for our science-driven approach and our intense culture of innovation—a philosophy that lets us push the boundaries of pediatric care.

    Our patients benefit from our Pediatric Neuro-immunology Program expertise: We are a main referral center for pediatric encephalitis in New England. We also have strong ties to the small network of physicians and researchers all over the country who are working to better understand, diagnose and treat this extremely rare condition.

    The goal of the Department of Neurology is to develop programmatic areas of relevance to the developing brain and to integrate clinical and basic neuroscience. Research areas within our department include clinical departments:

    • Developmental Neurophysiology Laboratory (through the Division of Epilepsy and Clinical Neurophysiology)
    • Electromyography (EMG) Laboratory
    • Neuromuscular Program
    • Center for Pediatric Epilepsy Research (through the Division of Epilepsy and Clinical Neurophysiology)

    Read more about how we’re improving treatment for epilepsy through research.

    Spotlight on: Boston Children’s Clinical and Translational Study Unit
    Read about a day in the life in our Clinical and Translational Study Unit.
    Spotlight on: Children speak
    What’s it like to be a medical research subject?
  • Things are looking up

    Encephalitis had Collin Goodchild's parents terrified and his doctors and nurses searching for answers.

    Collin GoodchildNot all seizures in children are violent. Some could even go unnoticed. Others might cause a child to go instantly dark, like an unplugged lamp—unable to respond and staring into space. That's what happened to Collin Goodchild on July 1, 2008, when he was almost 6.

    After a second seizure almost 10 days later, Collin came to Boston Children's, unable to walk in a straight line or follow a moving finger with his eyes, and his arm was jerking uncontrollably. "Our minds were racing," says Collin's father, Mark. "It was a complete nightmare."

    Boston Children's doctors diagnosed Collin with encephalitis, an inflammation in the brain that can be caused by a number of things, including viruses, bacteria and the body's immune system turning against itself.

    Fortunately for the Goodchilds, encephalitis—which is often confused with the more dangerous bacterial meningitis—is rarely fatal in the United States. But identifying its cause can be a real challenge. There are a few tests that can recognize certain causes, but often doctors and families never know for sure what's behind a child's encephalitis. "The doctors tested Collin for everything they could, but everything was coming back normal," says Mark. "I was glad he didn't have the bad things he was being tested for, but it wasn't giving us any answers, so it was kind of bittersweet. "

    Encephalitis is known to cause symptoms like fever, confusion and difficulty walking and talking, but these often subside over time. Unfortunately, there's no way to know how long this might take, or what, if any, long-lasting effects the encephalitis might lead to down the road. "The doctors can tell you, 'We hope he'll talk again. We hope he'll walk again. We hope he'll eat on his own,'" says Mark. "But they don't know—that's what's so scary."

    The weeks following Collin's diagnosis were a nightmare for Mark and Suzette. Collin's arm-jerking developed into a full-blown movement disorder, with episodes of uncontrollable thrashing and screaming. The doctors finally brought the disturbing episodes under control, but only by medicating Collin very heavily.

    Soon, his speech began to dry up. "He could still use a few words, like 'yes' or 'no', but other than that he could barely talk," says Suzette. "And I don't know if he was following instructions either. You'd ask questions, and he wouldn't do things. It was like he didn't understand. The doctors would come in and ask him to raise his hand, wave, or blink, but he wouldn't do it. It was almost like he was somewhere else."

    A few days later, Collin lost the ability to walk. Shortly after that, he couldn't even swallow on his own and began receiving all his nutrition through a feeding tube inserted into his stomach.

    Mercifully, after three or four weeks, Collin's symptoms started to subside as his brain began its long, slow healing process. He began to swallow again, so he could get some of his nutrients by drinking small amounts of liquid. It was encouraging, but he was far from out of the woods. He still couldn't walk or communicate, so began extensive physical, occupational, speech and feeding therapy.

    Fortunately for children like Collin, young brains are not yet fully developed, so they're strong and adaptable. But it's nearly impossible to say how much of the brain will heal—once the medical emergency passes, you can see a light at the end of the tunnel, but no one can say what you'll find when you get there.

    So the Goodchilds kept doing everything they could to get Collin well. "We went anywhere and everywhere we needed to go," says Suzette, including kindergarten, a prospect his parents would have never deemed possible a month earlier. Collin spent about an hour each day in school, working with an aide and soaking up his surroundings. He still couldn't communicate, and received a majority of his nutrients through a feeding tube, but he was walking again and slowly rebuilding his strength and dexterity.

    Flash of insight

    Mark Gorman
    Mark Gorman, MD, neurologist, connected the dots between a patient's encephalitis and that of a group of women with ovarian tumors.

    On the day in December that would change Collin's life, his neurologist, Mark Gorman, MD, woke up suddenly in the middle of the night with an idea. He remembered a study he'd heard about at a conference that described a subset of encephalitis patients with movement disorder, just like Collin. It wasn't an obvious association to make, because these patients were women with ovarian tumors, but Gorman focused on the similarities. He quickly located and contacted the doctor who had first identified this subset, and described Collin. The doctor agreed that it sounded like the same set of symptoms, and identified them as indicators of a certain type of encephalitis known as anti-NMDA receptor encephalitis.

    Things moved quickly after that. Gorman sent a sample of Collin's blood and spinal fluid for testing, and sure enough the results came back positive for anti-NMDA receptor encephalitis. Finally, after months of uncertainty, Collin's phantom malady had a name, and it was something Gorman could treat. Collin was placed on an intensive three-day round of steroids, and monthly sessions of a four-hour-long infusion of a blood product called IVIg.

    Turbocharged recovery

    "Even after the first treatment, we felt things were getting better," says Suzette. "And then in February, he had his second IVIg and his gross motor skills started to click, just like that. We had him on a handbike, and his arms and legs were just going."

    One day in March, she was in the kitchen and Collin was in the living room with his younger brother Colby. "They were just sitting there, and as usual Colby was doing all the talking since Collin couldn't," says Suzette. "But then I heard a voice and I said, 'Oh my God, that's not Colby, That's Collin!'" Suzette called Mark and told him to come home.

    "The kids were sitting at the table, and Colby was all excited," says Mark. "He'd say 'Dad, watch this…Collin, say circle.' And you hear this little voice: 'cir-cle?' And Colby would say, 'Collin, say star,' and he'd say 'star.' He said square, he said triangle. It was unreal."

    Two days later, Collin was picking cashews out of a bag of trail mix, repeating the word cashew. "We were all laughing," remembers Suzette. "We just thought 'This is a miracle. We've been waiting months for this.'" Later that week Collin went in for his third IVIg and came out speaking full sentences. The room exploded in joy.

    From then on, Collin's turbocharged recovery took off. He started responding to what people were saying to him, and asking questions of his own. "It was by far the most amazing thing I've seen," says Gorman. "I just asked him normal stuff I'd ask any 5 or 6 year old." Most thrillingly, his knowledge was intact, and words flooded back into his vocabulary. Kitty Petty, the Boston Children's education consultant who helps Mark and Suzette with Collin's academic program, says the fact that Collin retained so much from before the encephalitis is very significant. "He's not just parroting words, he's recognizing things and identifying them," she says. "These are important cognitive activities."

    At school, Collin began to be tested on writing, numbers, shapes and colors. More people than he will ever know watched in delight as he sailed through the goals that were set for him.

    Now, when they're not snowboarding in Maine, Collin and Colby are classmates in first grade. "People take so much for granted," Suzette says. "When something like this happens, it sets you back, and makes you realize that if you have faith, and a strong family, and the community that we do, that you can get through it. And we did. We really did."

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