Adam

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.

Each time his son has flu-like illness Adam learns more about when is the right time to take him to a doctor.

Age at interview 40

Gender Male

As a parent, you know, with the first child, you haven’t got, enough experience. So it’s happening to every parent, you feel a bit you know, he is ill and that kind of things. First child, the first mostly they just run to the hospital and say, he’s crying and his fever is like this and that, you know. When you have, you know, the second child or the third child or when you have a child with this condition, you get more experience and with my son, you know, since we have, you know, our son you get a lot of experience because we had, you know, often, you know, this kind of things and every day you learn more and so you we have to judged, you know, shall we contact you know, the doctors or can we manage it in the situation we are in. So, if it’s, if the fever is not that high or his breathing is not that bad, we try to manage it. To treat him with Calpol or Nurofen and check his temperature regularly. But, if the fever is very high and it’s happened sometimes you know, up to forty it’s happened, 38, 39 and that kind of thing, it’s maximum 40. When the fever going up to that you know, level, we have to contact the GP or we have to you know, take him to the emergency at the A&E as soon as possible and the other thing is, you know, his breathing and those the important thing and it happened to my son often, when he was a child, first he started coughing, maybe a fever. But the cough, you know, getting worse and worse until he came, he became kind of breathless and he couldn’t cough at all. That we thought, maybe his breathing is not coming from his mouth. And he just lie down, you know, like very silent, to be honest. So when it comes to that situation you have to call the ambulance as quick as possible.

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Adam has been told that if his son has a high fever he must contact the GP. Adam telephoned for an ambulance when his son became breathless and listless during an episode of flu-like illness.

Age at interview 40

Gender Male

But, if the fever is very high and it’s happened sometimes you know, up to forty it’s happened, 38, 39 and that kind of thing, it’s maximum 40. When the fever going up to that you know, level, we have to contact the GP or we have to you know, take him to the emergency at the A&E as soon as possible and the other thing is, you know, his breathing and those the important thing and it happened to my son often, when he was a child, first he started coughing, maybe a fever. But the cough, you know, getting worse and worse until he came, he became kind of breathless and he couldn’t cough at all. That we thought, maybe his breathing is not coming from his mouth. And he just lie down, you know, like very silent, to be honest. So when it comes to that situation you have to call the ambulance as quick as possible.

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Sometimes Adam’s GP says to wait a few days before he prescribes antibiotics for his son.

Age at interview 40

Gender Male

Is he still having flu sometimes? The same severity or they’re a bit milder, lighter?

A bit mild, in a way. You know, if I see, you know, that the breathing side he’s not that bad as it was before. But, the other side, you know, he’s coughing sometimes he’s getting worse and it change to infection to his chest, that’s why he got antibiotics sometimes. It’s not that often. But he’s less, much less than it was before.

So the use of antibiotics has been sort of kind of been reduced as he grows older or?

When the doctor think, you know, if they think you know, it takes time, you know, to because when you got the flu, sometimes it takes time. They don’t give antibiotics straight away. They say, wait a couple of days, check it, listen to his chest. So, they decide, you know, whether they can give antibiotics or not. Sometimes he goes wheezy with his chest and the cough is getting worse, so doctor decide that when he or she you know, think you know, it’s infection they have to give antibiotics.

This is the GP?

The GP, yeah.

Did you get an appointment easily, because sometimes people have to wait for a GP appointment?

To be honest, you know, he’s different from day to day, depending on his situation when we explained it to the doctors. So, sometimes we got an appointment, you know, same day. If they haven’t got any appointments in the morning we have to wait until evening time, you know, five six and sometimes we have wait until next morning.

Do you have a view when antibiotics should be prescribed to your son? And on what situation should antibiotics be prescribed to your son?

When we took him to the GP and the doctor checked if he need antibiotics or not. The doctor tells us, you know, what he thinks, if he thinks his virus, he tells us it is a virus or, he tell us what to do. If its infection and he thinks he should have antibiotics he tells us what he thinks. He says, yeah, I think it’s an infection and he needs antibiotics. Sometimes he will ask, you know, it seems that he got virus and we’ve got to give him antibiotics. Always we have to discuss the situation with the doctors and what they suggest.

Have there been occasions where you haven’t agreed with the doctor? And he says, he might, he does need or no he doesn’t need.

It’s not that often, but you know, it could be sometimes that we thought, you know, it’s getting you know, and he was very ill and we thought, you know, it’s infection or sometimes they say, no, this is a virus. We have to see. It’s getting worse and bring it back and then he starts with his infection, sometimes but not that often.

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Adam’s son doesn’t have the flu vaccine every year, depending on what his doctor advises.

Age at interview 40

Gender Male

Do they give him the flu vaccine every year?

Not every year. Sometimes if we think, you know, this year is gonna be, you know, very cold or if the doctor is, you know, suggests we give him the flu jab. If not, we just jump it you know so not every year, but sometimes. I think we gave him, you know, this year, because the doctor says, you know, might be is going to be a bad flu this year

How do you feel about him having the flu jab?

He hasn’t had that many flu jab, to be honest. I think he had a couple of times in his life, the flu jab one. So

Do you have any concerns about him having the flu jab?

To be honest, you know, the last time he had the flu jab he’s you know, very unusual, you know, that we didn’t expect that’s, that’s the year he had, you know, worst. So that’s why, you know, we haven’t given him every year [laughs]. I don’t know why. But one year was okay, the first year, but second year, he’s very you know, hard for him, you know, that year. We don’t often, you know, colds, flu, so I think if I remember right, that year he had antibiotics four times, four times.

How old was he, roughly?

Think he was about four years.

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