Susan
Ciaran has Down’s syndrome which means he cannot explain to his parents when he feels unwell. He was also diagnosed with Duchenne’s muscular dystrophy last year. He doesn’t like to swallow medicine, so his parents usually give it to him through a PEG (a percutaneous endoscopic gastrostomy’ tube which goes directly into the stomach), or as a repository. Ciaran seems to catch things more easily than others. Alongside the usual coughs and colds, Ciaran had double pneumonia last year, which made him ill for about 6 weeks. Ciaran’s parents now have powdered antibiotics so they are able to treat Ciaran more quickly if he develops serious flu-like symptoms.
Ciaran has Down’s Syndrome and was diagnosed with Duchenne’s (a rare form of muscular dystrophy) at the age of 8, which his mum Susan, says was a bit of a shock. Ciaran has had major hip surgery which led him to lose a lot of weight and he now uses a wheelchair. Susan says he seems to catch things more easily than other children. Ciaran doesn’t speak, but signs in Makaton which means he cannot tell his parents exactly what he is feeling when he is unwell. The only way his parents know that he’s not well is when he stops drinking or becomes lethargic. He also stops eating, but his mum said he’s not much of an eater anyway’.
Last year, Ciaran’s parents noticed that he was a bit feverish and had stopped eating and drinking properly for a couple of days. They took him to the GP, who did not seem overly concerned. That night Ciaran deteriorated quickly so they returned to the GP the following morning. An ambulance was called when the GP couldn’t find Ciaran’s pulse. Ciaran had developed double pneumonia and was taken to resus in A & E where he was fed oxygen and spent two weeks on the paediatric high dependency ward. He’d had pneumonia once before but it wasn’t as bad. At hospital, Ciaran was treated with two different types of antibiotics and had some X-rays taken of his lungs. He was fed through his nose for about 8 days. He was visited once a day by a physiotherapist who used a hoover’ device to remove build up in his chest and nose because he doesn’t know how to cough’. He was ill and off school for 6 weeks.
When Ciaran is unwell, Ciaran’s parents take his temperature under his arm and he has a PEG to take fluids in’ as he won’t swallow. His parents give him paracetamol suppositories and he gets the flu jab annually. His current treatment includes steroids, Movicol, PaediaSure and multi-vitamins for his Duchenne’s. His Duchenne’s is reviewed every 6 months and he sees a consultant pediatrician who specialises in Down’s Syndrome every 3 months.
Ciaran’s parents have now been given powdered antibiotics to prevent further developments of flu-like illnesses. If he becomes unwell with flu-like symptoms again, Susan says they would take him straight to the GP. She’s unsure when to give him antibiotics and would like more information and advice on that, and information about how to tell whether something is viral or bacterial. Susan is concerned about the possibilities of antibiotic resistance, especially as Ciaran may have to take them more as he gets older and his condition deteriorates.
Susan says she and her husband were not aware that Ciaran would have so many health complications. When he is very ill, they stay up with him during the night. They have to take a lot of time off work and don’t find much time for holidays. They also find it difficult to go places and visit family as other people’s houses aren’t set up for Ciaran and he is not toilet trained, which makes travelling difficult. Ciaran’s social worker has helped them apply to various charities so they can have respite one night a month.
Susan would advise other parents of children with underlying health conditions to take their child to the GP if they have a fever that lasts for a day. Her advice to health care professionals would be to speak to each other. She would like to see more joined up thinking’ among different health professionals and an holistic approach to care which means all the professionals involved in a person’s care are aware of each other. Susan fears being overprotective but stressed the importance of taking your child to the GP or to A & E if they’re unwell.