Adam’s son is seven years old and he was diagnosed at birth with skeletal dysplasia with short stature, developmental delay, eczema and probably asthma (recurrent viral induced cough and wheeze). Up to the age of four, his son was much affected by flu-like illness as he often developed breathing difficulties and chest infections that required hospital treatments including nebulisers, steroids and antibiotics. His current medication includes: Salbutamol 2-4 puffs 4 to 6 hourly and Becometasome 2 puffs when required.
Adam’s son is seven years old and he was diagnosed at birth with skeletal dysplasia with short stature, developmental delay, eczema and probably asthma (recurrent viral induced cough and wheeze). After his birth, he stayed in hospital for two months and was fed with a syringe through his nostrils for the first three or four months of his life.
Up to the age of three, Adam’s son had and unstable neck and wasn’t able to neither sit down nor stand up. His neck was too weak and he just used to roll on the floor. By his fourth birthday, he was able to stand up and sat without help. At that time he was already in the nursery and was supported by a teacher assistant.
For the first four years of his life Adam’s son was under the care of several consultants and he remembers that there were many hospital appointments to attend. Nowadays, his son has two main hospital appointments: one every six months with the respiratory and heart specialists and an annual review with the paediatrician. Adam explains that the hospital lends them a machine to take home to check his son’s blood oxygen levels. Adam records the machine’s readings and these are evaluated every six months. The consultant also checks his lungs and heart. Up to the age of five he also had physiotherapy and occupational therapy both, in hospital and at school.
For the first four years of his life, Adam’s son was greatly affected by flu-like illness. Every two months or so, his son was affected by flu. And because of his small chest cavity, he often developed chest infections that required hospital admission. It was very hard for him to breathe so often the ambulance rushed him to hospital. In there, he received nebuliser treatment, was given steroids tablets and his inhaler medication would be upped. Sometimes it took a week or more of hospital treatment before he was discharged from hospital. The family has two more children so one of them stayed in hospital while the other stayed at home looking after the other children.
For the last three years, Adam’s son has been coping better with flu-like illness and he doesn’t develop chest infections every time he has an episode. So, neither antibiotics nor steroids are required as often as before as episodes tend to be milder and shorter. But Adam is concerned about the possibility of antibiotic resistance, and the longer impact of steroids use. He also explains that when his son was younger, he had many X-rays taken and he is worried about its possible effects on his son.
Adam feels that he and his wife have sufficient knowledge and experience to decide when their son is in need of medical attention. Their attitude is to manage a flu-like illness at home and treat him with over the counter medication and closely monitor his breathing and symptoms, especially his cough. If symptoms do not improve and if he develops a high fever they call the GP or take him to A&E.
Adam relationship and communication with health professionals has been good and he is grateful for all the help and assistance his son has received. His advice to other parents is to always ask questions because in his experience, health professionals have always engaged with him and explained things. The only thing that he has found difficult is to book GP appointments.