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There are many ways you can help children and their families get the care they need.
We understand that you may have a lot of questions when your child is diagnosed with encephalitis:
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.
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.
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.
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.
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:
Encephalitis means that the brain tissue has become inflamed, and this can be caused by different things.
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:
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.
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:
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.
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:
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.
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.
While much remains unknown about this condition, we’ll do everything we can to answer your questions.
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.”