Morning:
8°c
Ivan also suffered rare epilepsy
Anna Davis25 Feb 2009
Ivan Cameron suffered from a rare form of epilepsy called Ohtahara Syndrome, as well as severe cerebral palsy.
Children with Ohtahara Syndrome suffer seizures before they are three months old. Most have an underlying structural brain abnormality which may have been passed on in their genes, or suffer brain damage around the time of birth.
Babies with the condition are often floppy and excessively sleepy and over time may develop stiffness in their limbs. The syndrome can be very difficult to treat with medication.
Children with it make very little developmental progress and are severely disabled. They remain totally dependent on others and often feed poorly. Research says death usually occurs from chest infections within the first two years of life.
About half of people with epilepsy can control the condition with drugs, but those with uncontrolled epilepsy have more seizures and experience a lot of worry and fear. People with cerebral palsy often experience jerky movements and have difficulty controlling facial expressions.
Symptoms can take a few months to develop. David Cameron said he and his wife Samantha noticed Ivan was having sudden jerky movements within days of his birth which may have been related to the palsy or the epilepsy.
The most common cause of the incurable condition is when the unborn baby's developing brain becomes damaged while it is growing in the womb.
This may be caused by genetic problems, malformations of the brain and conditions that affect the mother, such as rubella.
Dr Lorraine Pinnington, associate professor at Nottingham University's rehabilitation research unit, said: "Those with severe cerebral palsy have problems talking and walking and use a powered wheelchair. Complications can arise with eating and drinking as small portions of food or saliva can be inhaled and chest infections can occur as a result.
"People with cerebral palsy can also have learning disabilities and they may not be able to move in a reliable way. They may only be able to control their eye movements. A family member would be able to work out what the sufferer was trying to communicate from experience, even if an outsider would have no idea.
"Sometimes a child cannot move around or change his bodily position in the way he would like, so his limbs become stiff and tight. Parents are taught how to perform physiotherapy and stretch their child's arms and legs to maintain the range of movement.
"Rehabilitation is focused on allowing the family to live a happy life, and not to allow the child's condition to take over."
Reader views (1)
A well written and informative piece of journalism that does not sensationalise. Correct terminology with factual, non-judgemental explanations. This report is clear concise and without hysteria - Tabloid newspapers take note.
- Margaret Hay, Kirkintilloch Scotland, 25/02/2009 18:49
Report abuse
