Lennox-Gastaut Syndrome (LGS) is a type of epilepsy which some children and young people have. Epilepsy is when someone’s brain doesn’t work properly for some of the time. The brain sends electric messages all over the body telling it what to do. If someone has epilepsy the messages sometimes get mixed up or blocked, so the muscles don’t know what to do. This is called a seizure. People who have LGS can have lots of different types of seizures. Children with LGS can also have a Developmental Delay, Learning Disability, ADHD or Autism (ASD).
What is it like for siblings who have a brother or sister with Lennox-Gastaut syndrome?
Lots of siblings have really good relationships with their brothers and sisters who have LGS. They enjoy playing with them and spending time with them. However, siblings also say that they can find it frightening when their brothers and sisters have seizures, which can also sometimes be called fits. They may also have to get help when seizures happen, by alerting an adult or calling an ambulance. Siblings feel worried about their brothers and sisters as they don’t always know when seizures are going to happen. This can make family life difficult. Siblings say that their brothers and sisters with LGS can need lots of extra attention from a parent, which makes them feel left out. Children with LGS can sometimes be aggressive which makes siblings feel worried and afraid. They also say that their stuff can sometimes get damaged.
What causes LGS?
Some people are born with LGS. Some people get LGS when their brain has been injured. This may have been because of a serious illness or a bad accident. For more than half the people who have epilepsy, including LGS, the doctors do not know what caused it. It can start at any age. LGS cannot be caught from someone else.
What does it mean?
There are lots of different types of seizures which people with LGS can have. One of these is called a Tonic-clonic seizure. Some people call them grand mal. This is where the person falls to the floor and has jerking movements.
Some people can have Atonic Seizures. This means that their head or body may go limp or floppy. They are also known as drop attacks. In some children, only their head drops suddenly.
Another type of seizure which people with LGS might have is called an Atypical Absence Seizure. The person will look as if they are staring into space, or daydreaming but may still be able to respond a little.
Some young people with LGS may have Focal Onset Aware Seizures. This is when the person stays awake and can still respond. These used to be called simple partial seizures. These seizures are very short, lasting a few seconds to less than 2 minutes.
Most seizures start without warning, but some people have a funny feeling, feel sick or have butterflies in their tummy. Or they may have an odd smell or taste just before their seizure starts.
Each person with LGS is different. But they may also have problems with things like walking and balancing, riding a bike or playing with toys. They may also struggle with talking, drawing and writing, using a spoon or fork, or getting dressed by themselves. They may have difficulty understanding words or ideas, explaining how they feel or understanding other people’s feelings.
What treatment is there?
Most people who have LGS have to take medicine every day. People with LGS might need to take more than one type of medicine. This may help to prevent seizures. Sometimes it can stop the seizures altogether.
Other people with LGS may have Dietary Treatment. This is when only eating some type of foods can help to reduce the number of seizures which the person has.
In a few people, when these treatments don’t work, they may need to have an operation.
This has been read and approved for publication by Rebecca Pender in June 2022 and will be reviewed and updated every 2 years