Sarah

Arthur is 4 and has Downs Syndrome which he was diagnosed with at birth. He was also premature, born at 34 weeks. He has no underlying conditions but does seem to be affected more than other children when he gets flu like illnesses. He has had two bouts in hospital with scarlet fever and tonsillitis. Arthur is non-verbal which makes diagnosis and communication about illness difficult, but he is learning to point to parts of his body which hurt during which makes it a bit easier. His mum says it is sometimes difficult to diagnose Arthur as he also doesn’t like people looking in his mouth, although their GPs are generally very good and try hard.

Arthur is 4 and has Downs Syndrome which he was diagnosed with at birth. He has no underlying conditions apart from the general global developmental delay that affects him day to day’. Arthur gets the usual coughs and colds, but it seems to take him longer to get better than other children, such as his brother. Arthur is generally a well boy, although he has had two bouts in hospital with tonsillitis and scarlet fever.

When Arthur gets a normal cold, it normally lasts about 3 days. Sarah, Arthur’s mum, will give him calpol and paracetamol every four hours to reduce his temperature. However, if Arthur is not taking fluids or eating properly after 48 hours, Arthur’s parents will take him to the doctor’s. Sarah and her family do not go to the doctor’s for willy nilly’ things, so GPs tend to take them seriously and are pretty good. Sarah thinks that sometimes other parents of children with disabilities worry more and take their children to the doctor’s quicker.

Arthur is non-verbal so can’t tell his parents what’s wrong when he is feeling ill. He is learning to point to parts of his body, such as his throat, but Sarah says they often still can’t tell exactly what is wrong with Arthur. She thinks it must be hard for doctors to diagnose him as all they can go by is visuals. Arthur also doesn’t like people going in his mouth so it can be a bit of a battle’ sometimes taking him to the doctor. Sarah thinks that sometimes Arthur might get given antibiotics sooner if he was able to explain how much pain he is in.

Arthur has had two bouts in hospital after having tonsillitis and then scarlet fever. Arthur’s immune system seems worse than a typical child’ and he picks up everything’. He had to take 6 weeks off of nursery last winter. Sarah and her family try and prevent germs spreading by washing their hands regularly and she will keep Arthur away from other poorly children. Arthur has an annual flu jab but his mum says he is generally well, so he shouldn’t end up in hospital with flu like symptoms. When Arthur is given antibiotics, he tends to improve after about 4 days, a bit longer than it seems to take others. Sarah feels that Arthur could sometimes be given antibiotics sooner than he tends to get them. She finds it hard to get Arthur to take them but sometimes mixes it in with yoghurt. She doesn’t worry too much about Arthur becoming immune to antibiotics as they work for him.

Sarah has a good support network and her parents, mother in law and sister live nearby and help take care of Arthur. Sarah’s advice to parents would be be confident when you go to the doctor’. If you think something is wrong, don’t just let the doctor tell you it’s a bug or virus, be a bit more assertive. Sarah would like to see better, clearer communication in hospitals, as well as better food for visitors/parents. She would advise health professionals to never make assumptions about what a child needs. She would prefer to treat Arthur’s illnesses on a case by case’ basis and recognises that every child is different.

Flu-like illness affects Arthur’s sleeping patterns. His younger brother stayed with his ( semi-retired) grandparents so that Sarah could concentrate on looking after Arthur.

Age at interview 37

Gender Female

Sarah wonders why doctors don’t give parents up-date information about the child straight after a ward round.

Age at interview 37

Gender Female

Each time Arthur is poorly, Sarah tries to assess the nature of the illness to see if he would benefit from having antibiotics.

Age at interview 37

Gender Female

Sarah uses several information sources. She has found that talking to other parents on the Down’s Syndrome Facebook group has been really helpful, while recognising that Arthur may be different.

Age at interview 37

Gender Female

If Arthur had the flu-like illness, Sarah didn’t feel he would be seriously ill and need hospital treatment because he has the annual flu vaccine and he is generally well.

Age at interview 37

Gender Female

Signs that Arthur is getting flu-like illness are he becomes lethargic and has a high temperature.

Age at interview 37

Gender Female

Sarah usually treats her son’s flu-like symptoms at home for forty eight hours with over the counter medicines and fluids. If he is not getting better she would take him to the GP.

Age at interview 37

Gender Female

Each time Arthur is poorly Sarah tries to weigh up the individual illness to see if he would benefit from having antibiotics.

Age at interview 37

Gender Female