Undiagnosed illness

Find out how to get help if your child is suffering from an undiagnosed illness

A 7 year old child is baffling medical science with an illness that remains undiagnosed since he was born.

Ruth Dalton had a normal pregnancy - Samuel was born 2 weeks early by an elective caesarian. He was a small baby, 5 pounds and 12 ounces and didn't feed properly for 4 months. He was initially treated for a feeding problem, but mum Ruth knew there was something more serious going on.

Samuel had a brain scan and doctors realised part of his brain hadn't developed properly. Since he was 4 months old, Samuel has been back and forward to hospital and has had every blood test, chromosome test under the sun. He's had appointments with neurologists and genetecists and they don't know what is wrong with him and why. They hope that one day they will be able to diagnose him. 

Staying happy

He can't walk or talk, but he's teaching himself to feed on his own. He has had a lot of operations on his feet as he was born with a club foot. He can crawl around though and remains a very happy child.

Mum Ruth remains optimistic but admits that at times it is hard. "Samuel is lovely to look after, but it has been 8 years of looking after a baby. There has been no mental development".

"Samuel is fit and healthy now, but at puberty he could go downhill. The most frustrating thing is not knowing what the future holds, or even if there is a future."

Facts and figures

Although estimates vary enormously, the most commonly quoted figure suggests that between thirty and forty percent of special needs children do not have a specific diagnosis. Most people are unaware that such undiagnosed children exist.

Non diagnosis means more difficulty in claiming benefits and accessing support services. Parents live in a "No Man's Land" having no idea what the future holds for their child. Some families even suffer verbal abuse from the general public who see them as uncaring parents who have not bothered to find out what is wrong with their child.

Medical tests are sometimes refused on the grounds of costs. Parents have to prove over and over again that their child's need is genuine. This compounds the stress that they already endure.

Children can suffer from combinations of various conditions including:

• Epilepsy
• Growth problems
• Feeding problems
• Developmental delay
• Poor mobility
• Vision problems
• Unexplained pain
• Genetic problems
• Speech problems
• Behavioural problems
• Neurological problems
• Orthopaedic problems
• Heart problems
• Emotional difficulties
• Skin problems
• Hearing problems

There are no obvious reasons why these things occur.

S.W.A.N

S.W.A.N came into being sometime after the birth of Charlotte. Born with a hole in her heart her family was told that development would be delayed following surgery. They watched and waited but Charlotte didn't show any signs of development.

Referred to an assessment unit the family was told that she had vision and hearing problems. All tests came back negative or normal. Finally at Ormond St Children's Hospital in London the news was broken gently to the family that they may never get a diagnosis and that there are many more families in the same situation.

Charlotte's grandmother asked about a support group and finding that there wasn't one decided to start a small local group. This came into being with the help and support of 'Contact a Family'.

To her amazement she received enquiries from all over the UK and then overseas. S.W.A.N now has members in six countries outside the UK and is continuing to grow.

Charlotte is now 15 still unable to walk or talk, is epileptic, has developed scoliosis and has problems with her digestion. Her family have had to fight for everything for her due to the lack of a specific diagnosis.

If you have a child with an undiagnosed condition or are a professional working with children with un-named syndromes and you would like to become a member of S. W. A. N. please telephone the helpline on 01922 701234 or click on the link for more support