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

Lots of siblings have good relationships with their brothers and sisters who have OS. Other siblings can find it difficult because their brothers or sisters 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 OS may look and behave differently to other children. This can also make it hard to have friends round and do things that other families do.

Babies and young children with OS usually have to go to hospital a lot during the first few years of their life.  This might be for appointments, or to stay in, or both. This is because the epilepsy can be hard to treat.

What causes Ohtahara Syndrome?

OS is very rare which means that very few children have it. People are born with OS.  You cannot catch it like a cold or get it from an accident like a bang on the head.  No one knows why some people have OS. Sometimes it is passed on through a gene by a parent, or from something that happened when the baby’s brain was being made.  Sometimes the cause is unknown. It is no one’s fault.

What does it mean?

Babies with OS may start having seizures in the first few days of weeks after they have been born. They may have lots of different types of seizures. The seizures can happen many times a day and usually every day. Babies might also be

• very floppy and sleepy in the first few weeks and months after birth
• difficult to feed
• become very stiff in their arms arms and legs after a few months of age
• slower to learn to do things, sometimes call delayed development
• have lots of chest infections

What treatment is there?

Most babies and infants who have OS have to be given medicine every day. They usually have to be given more than one type of medicine. This may help to prevent seizures. Sometimes it can stop the seizures altogether. Most babies and children with OS continue to have seizures for a long time.

As they get older children with Ohtahara Syndrome may need:

• physiotherapy to help their arms and legs to work better
• occupational therapy to help them learn to play and learn skills and also to look after themselves
• speech and language therapy to help them with their feeding and also their talking and understanding
• extra help with their learning – they may go to a special school

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