What is it like for siblings who have a brother or sister with Landau Kleffner syndrome? 

Lots of siblings have really good relationships with their brothers and sisters who have L-KS Other siblings can find it difficult because their brothers or sister need lots of extra care and attention which can make them feel left out. They can feel embarrassed if people stare at their brothers and sisters when they are out and about. This is because people with L-KS may look and behave differently to other children. This can also make it hard to have friends round and do the sort of things that other families do.

What causes Landau Kleffner syndrome

L-KS is very rare which means that very few people have it. In most children it starts between 3 and 8 years of age, you cannot catch it like a cold. No one knows why some people have L-KS. Sometimes it is passed on through a gene by a parent. Sometimes it can follow an infection that affects the brain, called encenphalitis.  Sometimes its cause is unknown. It is no one’s fault.

What does it mean?

Children with L-KS may

• Have difficulty with understanding words, some sounds and speaking
• Have behaviour problems such as Attention deficit hyperactivity disorder (ADHD) and attention deficit disorder (ADD)
• Epileptic seizures

What treatment is there?

Most children who have L-KS  need to be given medicine every day. They might need to be given more than one type of medicine. This may help to prevent seizures. Sometimes it can stop the seizures altogether.

Some children may need treatment with diet as well as medicine. This is called a ketogenic diet. The diet uses certain types of foods that can help reduce the number of seizures.

Very rarely, when the medicine or diet doesn’t work, children may need to have an operation. This is needed in only a very small number of people with L-KS.

As they get children with L-KS will need:

• speech and language therapy to help them with talking and understanding
• psychological help for them and their families to help with their behaviour
• extra help with their learning – some children will go to a special school to help with their speech and behaviour
• occupational therapy to help them with doing tasks and looking after themselves
• physiotherapy to help their co-ordinate their movements

These other types of help can be just as important as medicine and diet for helping children with L-KS.

This has been read and approved for publication by Dr Richard Appleton, Consultant and Honorary Professor in Paediatric Neurology in July 2022 and will be reviewed and updated every 2 years