Treatment & Care
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.
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
- navigating the hospital experience
- resources that are available for your family
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