Pediatric Rasmussen’s Syndrome
Rasmussen’s syndrome causes inflammation on one side of the brain and seizures.
Rasmussen's Syndrome, a type of encephalitis, is a very rare form of brain malformation that may happen anytime during childhood. While the cause is unknown, the disorder causes inflammation in one half of a child’s brain. The inflammation affects the nerve cells in the brain and causes seizures. These seizures occur very frequently, often many times a day. Seizures usually start between 14 months and 14 years of age. Weakness and other neurological problems often begin 1 to 3 years after the seizures start.
The Epilepsy Center at Children’s Health is the first program in the country to be certified by the Joint Commission, the nation’s preeminent standard-setting accrediting and certifying regulatory body in healthcare. We are also a Level 4 Epilepsy Center, providing the highest level of treatment for children with epilepsy. That means we have experience identifying Rasmussen’s Syndrome and in researching the latest advances in treatment for the condition.
Our interdisciplinary medical team, which includes physical and occupational therapists, has the experience to not only comprehensively diagnose children with this condition, but we remain the area’s only center to perform the most advanced procedures and therapies for the treatment of epilepsy.
At Children’s Health, our treatment includes education and support for the whole family. In addition, the Epilepsy Center works with referring physicians and area Emergency Departments to:
- Provide seizure safety education programs
- Expedite appointments in order to get your child evaluated quickly
Seizures are usually the first symptom that a child has Rasmussen’s syndrome. The symptoms a child experiences with this condition depend on which side of their brain is affected.
Possible symptoms include:
- Associated learning and behavioral difficulties
- Difficulty with thinking and memory
- Language problems (aphasia)
- Mild weakness of an arm or leg
- Weakness (usually beginning a couple of years after the onset of the syndrome)
Tests and Diagnosis
To diagnose Rasmussen’s Syndrome, your physician will do a detailed physical exam of your child, which will include an electroencephalogram (EEG). An EEG is performed by placing electrodes on the scalp and recording the electrical activity of the brain.
The seizures associated with Rasmussen’s Syndrome can be difficult to control with medication. Some children benefit from immunomodulatory therapy and others from surgery to disconnect or remove the section of brain causing the seizures.
What causes Rasmussen’s Syndrome?
There is no known cause for Rasmussen’s Syndrome.
How does Rasmussen’s Syndrome relate to epilepsy?
Rasmussen’s Syndrome causes inflammation in one half of a child’s brain. The inflammation affects the nerve cells in the brain and causes seizures.
What is epilepsy?
Epilepsy is a condition that affects how the nerve cells in the brain communicate with each other. When the normal electrical activity in the brain interferes with this communication process, seizures can occur.
What are the symptoms of a seizure?
The epilepsy symptoms most people recognize are shaking (called convulsions) combined with the body getting rigid, clenching the jaw, and biting the tongue. These are called tonic-clonic seizures and many people still know them as grand mal seizures. But some seizures are barely noticeable. Children may stare into space, stop talking abruptly and then start talking again, or start repetitious movements like chewing their lips or moving a hand. These types of seizures are called absence seizures, which used to be known as petit mal seizures. Sometimes a child may experience smelling something that isn’t there, numbness or a tingling sensations before the seizure. These are called auras.
What should I do while my child is having a seizure?
If the seizure is small twitching or staring, they should come out of it easily. For convulsions, make sure your child is in a chair that they can’t fall out of or lying on the floor with a pillow under their head. Turn their head to the side, but NEVER try to put anything into their mouth. Do not shake or hit them or shout at them. If the seizure lasts for more than five minutes or seems violent, call 9-1-1.
After a seizure, your child may be confused, foggy or tired. If they want to lie down, let them.
What kind of tests are there for Rasmussen’s Syndrome?
To diagnose Rasmussen’s Syndrome, your physician will do a detailed physical exam of your child, as well as an EEG and brain imaging.
How is Rasmussen’s Syndrome treated?
Treatment is focused on controlling the seizures. These seizures may be difficult to control with medication, but surgery has shown more promise.
Where can I find a support group?
Our Epilepsy Center will provide you with resources to help both you and your child. The Resources link on this webpage is also a good source for more information about epilepsy and support groups.