Seizures. Progressive weakness. Paralysis. Cognitive decline. Together, they could signal an unsettling diagnosis — Rasmussen’s encephalitis.
This rare neurological condition causes inflammation on one side of your brain. This inflammation causes frequent seizures (epilepsy) — and brain damage that gets increasingly worse. Seen most often in children, Rasmussen’s encephalitis (RE) can also strike adults. And once it starts, it doesn’t go away. But there are ways to manage it.
When you get this diagnosis, you may not know what to do next. But help isn’t far away. Cleveland Clinic is home to neurology experts who can confirm your diagnosis. Our team will find the best treatment for you so you can keep living your best possible life.
Our team knows that being diagnosed with a rare brain condition isn’t the news you expect to hear. And you probably have a lot of questions. We’re here to listen to you, answer your questions and guide you through what to expect — from the moment you reach out to us. Meet our team.
Cleveland Clinic is a leader in treating and researching even the most complex brain conditions. Our neurology team blends expert clinical care with compassionate support, keeping you at the center of all we do.
When you come to Cleveland Clinic for treatment, you get the most personalized care. This means you’ll have a thoughtfully chosen team of expert healthcare providers from different specialties working together to plan and manage your treatment. We build this team based on your needs and diagnosis.
Cleveland Clinic’s neurology team always looks for new ways to prevent and treat many different brain conditions. Often, we do this through clinical trials where you can try new medications or other therapies before they’re widely available. Ask your provider if you qualify for one of these studies.
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Rasmussen’s encephalitis is rare. And because it usually affects younger children, it’s even rarer when adults get it. But it happens — and we can treat it.
While we don’t know exactly what causes this chronic (ongoing) brain inflammation, researchers think it’s either:
While researchers are still trying to pinpoint a lot of things about this serious condition, a few are certain. Increasingly frequent seizures are the first sign. You might also notice weakness in your arms or legs.
As your condition progresses, you might start having problems with memory, thinking, talking and understanding things (aphasia) if it affects regions of your brain that control these things. You might also lose motor skills only on one side of your body (hemiplegia) — including partial paralysis on the same side (hemiparesis). Loss of peripheral vision on one side could also happen.
While the most severe symptoms often happen within the first year, the damage is usually lasting. That’s why it’s important to work with an expert neurology team familiar with diagnosing and managing rare brain conditions like Rasmussen’s encephalitis.
When you come to your first appointment, don’t be surprised if your provider asks a lot of questions about you, your medical history and what’s been happening. They may ask:
Testing is especially important in confirming an RE diagnosis — or ruling out other conditions. Our team will also do tests to learn how healthy your brain is. Magnetic resonance imaging (MRI) can show us if any brain tissue has died (atrophied) on one side of your brain. An electroencephalogram (EEG), which tracks brain activity, can also help us make a diagnosis. Brain atrophy that gets increasingly worse is a hallmark of Rasmussen’s encephalitis.
We may also do blood tests like a complete blood count or liver or kidney function tests to help rule out other conditions. A spinal tap (lumbar puncture) can also help us see if there’s another kind of infection, or inflammation causing these symptoms.
The most personalized care comes from combined knowledge and experience. That’s why we take a team-based approach to treatment at Cleveland Clinic. You’ll have a care team of providers from different specialties, like:
Your care team works together to confirm your diagnosis and build a treatment plan that’s personalized to your needs.
Our healthcare providers see patients at convenient locations in Ohio and London.
Treatment plans for Rasmussen’s encephalitis concentrate on helping you manage your condition and supporting the best possible quality of life. Your symptoms and overall health drive your care team’s recommendations.
Antiseizure medications can often reduce how often you have seizures — and how severe they are. They don’t usually put an end to RE seizures.
We may recommend immunotherapy to help your immune system and manage seizures — especially when surgery isn’t an option. This therapy may also stop further brain damage.
If you have a severe case of RE and have lost use of the affected half of your brain, we may recommend brain surgery called a hemispherectomy. Having surgery may stop RE from progressing and stabilize seizures. Your care team will go over the risks and benefits with you and your family.
Because Rasmussen’s encephalitis is a lifelong condition, you’ll always have to manage it. This means regularly taking antiseizure medications. And because RE typically involves some paralysis, mental decline and speech problems, you’ll probably have regular physical, occupational and speech therapy. Your care team will also want to see you for routine checkups and testing to make sure the condition isn’t getting worse.
It can be overwhelming to learn you have a rare neurological condition like Rasmussen’s encephalitis. Especially when you have seizures and other symptoms that keep getting worse, not better. You may wonder about your future and where to turn for help. Cleveland Clinic has the care and support you need. We’ll work quickly to pinpoint a diagnosis and start a treatment plan to slow your symptoms — so you can get back to living your best possible life.
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