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Flu or Flu-like illness in chronically ill or disabled children

Flu or flu-like illness symptoms

Flu, also called Influenza, is particularly common in the winter months. A high temperature of 37.5°C (99.5°F), a dry chesty cough, a headache, fatigue and weakness, chills, aching muscles, a runny or blocked nose, sore throat and loss of appetite are all common symptoms of flu (Influenza) in children. However, other types of infections may cause similar symptoms in children who are referred to as having ‘flu’. The term ‘flu-like illness’ includes all children who have these symptoms, whether or not they were caused by flu. However, some people still describe children as having ‘flu’ even if the exact cause of their symptoms has not been confirmed.

Parents we interviewed were well aware of the difference between a cold and flu, although sometimes initial symptoms such as a runny nose, a high temperature, or a cough were similar. When their child was getting flu or flu-like illness the parents noticed that they deteriorated quickly – sometimes within a few hours. Their knowledge of what was normal for their child alerted them that it was a more serious illness than a mere ‘sniffle’. Unusual factors included loss of appetite in a child who usually ate well, paper white skin in a child with ‘English rose’ colouring, the disappearance of the ‘sparkle’ from a child’s eye, a different smell, uncharacteristic sleepiness in the day time, a lack of interest in activities that were normally engaged in with enthusiasm, or a child who was usually noisy and mobile being ‘too quiet’ or too still.
 

Logan has had flu-like illness twice, it started with a high temperature and vomiting. His symptoms worsened within a day or two of starting to feel ‘out of sorts.’

Logan has had flu-like illness twice, it started with a high temperature and vomiting. His symptoms worsened within a day or two of starting to feel ‘out of sorts.’

Age at interview: 25
Sex: Female
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Yeah so when Logan has had flu in the past the first sign is that he’s just not himself. He’s a lot more grizzly than he usually is et cetera. He tends to get quite a high temperature so and that’s obvious that come with the grizzly and etcetera. And then he’s normally sick and that’s when I know he’s really, really ill cos he doesn’t get sick very often. With that he doesn’t want to eat his food. He doesn’t want to drink sometimes. He won’t have his favourite foods and he’s just generally not himself. Yeah so we just monitor him basically and, [noise] and make sure.

And do the symptoms develop very quickly one after the other or is it a gradual kind of process?

Normally a day or two when it goes from him being out of sorts. I think [hnnn] something might be up yeah, to full on being sick and needing a cuddle and a duvet on the sofa. Yeah I’d say a day or two.

Ok and does his temperature rise or?

Yes the temperature thing both times that he’s had the flu it’s risen to the levels where you’re checking it every 5 minutes just to make sure it doesn’t go up just that little bit further cos that’s when you know you need to, to ring the doctor or something. So they normally get to the point where if they get any further up you need to worry but yeah we tend to strip him off and try and cool him down and get his temperature back down but they do definitely rise.
 

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

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

Age at interview: 37
Sex: Female
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So they would - he always, whenever he's ill, he always starts off just by becoming very lethargic. That's our main "Ooh, Arthur's not very well, he's not moving." He is - although he doesn't walk far, he is a mover. So he'll move around a lot. The main physical symptom will be temperature, and he'll go off his food. So that'll be - and because of the Down's syndrome he often has snotty nose. So he doesn't always have a cold, but he always has a snotty nose. So we can't - if we see he's got a snotty nose, we don't automatically assume he's getting, getting a cold. So when a temperature kicks in, and other things kick in, that's when we know something, he's caught something or something's in the air. 
 

Waj knows that her daughter is getting a flu-like illness when she starts getting a runny nose and a cough.

Waj knows that her daughter is getting a flu-like illness when she starts getting a runny nose and a cough.

Age at interview: 31
Sex: Female
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It’s gradually she will start with her nose, runny nose. And then, after that, then it will become like she start coughing. Or sometimes out of nowhere you would just hear her coughing and it will be coughing like somebody scratching the wall. She won’t have runny nose. It will just, she will start coughing. She will go ‘whoop’ like whooping cough. And then, I said, ‘Oh my God, it’s starting.’ So I prepare myself. As soon as I know that, I prepare myself.
Lethargy (a lack of energy and tiredness), sometimes described as the child being ‘floppy’, was common. Matias’s dad said that Matias, “just wanted to sleep all the time, just shattered, absolutely shattered.” Jade was normally active even when she was unwell but when she had flu-like illness, she didn’t want to move. Maria said her daughter’s high temperature lasted for two or three days and “You couldn’t get even near her. She was on fire.”
 

Jade had a fever and felt too ill to get out of bed.

Jade had a fever and felt too ill to get out of bed.

Age at interview: 48
Sex: Female
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And you know she’d sort of had a bit of a cold but then she got to the stage where she was very feverish, she couldn’t walk anywhere, I mean she just couldn’t get out of bed, and that is very unlike Jade because even when she’s normally unwell she will still venture out eventually. But she didn’t. She didn’t want to move anywhere, and every time she said, every time she walked her head felt like it was going to fall off, you know, or cave in. It was like terrible. And when she was able to I took her to the doctor, and they said, “Well she’s obviously, she has a temperature but also they believed she had sinusitis because of the pressure in her head and face. 
 

Judith had a fever, a bad cough, chills and felt achy and lethargic. Her sleep was worse than normal.

Judith had a fever, a bad cough, chills and felt achy and lethargic. Her sleep was worse than normal.

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And what were the symptoms that she had?

So she, she has fevers. She had fever. She said she felt really uncomfortable all over. Very lethargic. Even worse sleeping than usual, because poor sleep is an aspect of her brain damage and subclinical epilepsy. And yes, as I say, you can tell from her skin. Terrible, terrible gluey snot and, and congestion. And croaky, lost her voice for a couple of days. Very croaky cough, bad chest cough, and fever. You know, very hot. And she said she was achy in the night, she would wake up a lot saying she was hot and achy in the night. And, and, and sweats. And then feeling cold and a bit shivery.
Eliza’s mother said that despite an underlying heart condition her daughter’s experience of flu-like illness was pretty normal, and like her own. However, children’s health problems sometimes meant that they did not have ‘normal flu’, or caused complications because of the nature of the health problem. Loss of appetite was a particular problem for children with diabetes who need to eat when they take insulin.
 

After five years of parenting a child with Type 1 diabetes Louise sees changes in blood glucose before the illness begins.

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After five years of parenting a child with Type 1 diabetes Louise sees changes in blood glucose before the illness begins.

Age at interview: 37
Sex: Female
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Five years on, I think I can really clearly identify when my son is gonna get ill. I would say the only advantage, not that there’s many advantages to having Type 1 is because you monitor so closely the blood sugar levels and things, I can tell when they are running high and I can, before any obvious symptoms appear, I can see that there is a problem. If there’s no obvious explanation as to why the, the numbers, the blood glucose levels are going high. So, I will, you know, I will always have that kind of alerts, you know what I mean? Kind of, I will be on high alert and then three days later, for instance, the symptoms of a cold, flu, whatever illness will appear and then I can say, ‘Oh, I understand why now, you know.’ So I had that pre-warning which is helpful, I would say. 

And what are his symptoms when he gets the flu? Is he feverish?

Yeah, pretty much kind of like any average child it would be kind of runny nose, high temperature fever, kind of cold as well, sweaty, achy bones, yeah that kind of thing. 

Now that I changed the position. 

Just sort of one other thing, loss of appetite. 

And so, on a typical episode of having a flu, is there a pattern on which the symptoms develop or no?

I found that I had, my son suffers from high stubborn blood sugar levels three days before the onset and then on the third day, symptoms appear and, and yeah, it can last quite a long time, I think.

He can develop something, cold sores. And that is already a signal to me that he’s going to become unwell, cos I can see that, you know, his immune system is down. And yeah, often is the case that he’ll have some type of virus. 

In terms of actually one thing I probably haven’t mentioned that is quite challenging is [son’s name], when he feels unwell, he has a loss of appetite, which really, really complicates things, because that means I have to be extra cautious when I administer insulin, because if he hasn’t eaten then I don’t know what the impact will be. Will it just bring it down to normal range or will it send him hypo. So I need to really be extra cautious with that. But five years on, I’m more, I’ve kind of got the courage now to kind of give him more insulin than probably, you know, I could send him hypo, if you like [laughs] on purpose, just in order to bring him up with a bit of glucose, and then I can stabilise him that way. There’s different ways in in which I can manage it. 
Children with lung disease or asthma tended to have very laboured breathing, which could be clearly heard and seen in the chest movements. Some parents said that they noticed a change in the sound of a cough, for example, from chesty to ‘incessant and dry’, or even a change in the child’s laughter, which Ruth said became more ‘shuddery’. 

Flu or flu-like illness symptoms could develop rapidly in children with a long term medical condition or disability, sometimes leading to complications which required medical treatment. Daniel has asthma and Nia is aware “that the one day he could have just a runny nose and a cold, and be blowing his nose, and the next day he could be coughing up green sputum…. a sign it has progressed to a chest infection.” Karen said, “You can’t just let things linger with him and say, “Oh in a couple of days he’ll be better.” Because in a couple of days he’ll probably be worse if you don’t do something about it.”
 

When Jack had flu he became very poorly very quickly.

When Jack had flu he became very poorly very quickly.

Age at interview: 40
Sex: Female
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So you didn’t have much time to manage the flu or the influenza … 

No.

… at home?

No.

It was literally just overnight and then, because he was a bit off on the Saturday but then he perked up on the Sunday morning and was fine. And then, I’d put him in his wedge and he’s just get a bit whingy so I thought, “Oh, I’ll put you back in bed”. And then I thought, “He is roasting hot”. So it was literally come on him really in the space of half an hour I think. It just, it was really quick. I think that was another thing as well that made me go, “Oh, hang on a minute”. Because normally they go like a bit –urrrgh – and then they’re a bit nnnrrrh and then it’s, it’s like a gradual isn’t it? But with Jack it wasn’t, it was like that, really quick, in the space of half an hour you’ve gone from being his little normal self to being poorly.
 

Within twenty four hours, Rebecca’s four year old son can change from feeling a bit ‘grizzly’ to having full blown flu-like illness.

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Within twenty four hours, Rebecca’s four year old son can change from feeling a bit ‘grizzly’ to having full blown flu-like illness.

Age at interview: 35
Sex: Female
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Probably just with him grizzling and moaning and being a bit stroppy. Especially now at this age probably thinking hang on a minute, why’s he like that, he seems really tired and grumpy and it’s out of character, and then it makes me think is he going to get poorly? And then he’ll probably start to get a temperature and feel hot. And then runny nose after that, and you know if it’s, if it’s just a, a clear runny nose then that’s just like typical for him but if it’s horrible green cold type nose and a temperature then you think, “Oh you know.” And then he’ll be really, really floppy and that’s when he will start coughing and once he starts coughing then we know usually that’s going to lead to trouble.

Right.

So it’s mainly those things and saying that he hurts, he says, sometimes he will say he hurt, “It hurts all over Mummy,” so I think with flu you get achy don’t you really achy, and he does actually go really shivery, that’s the other thing. Goose pimply you know and saying it’s cold, so when he’s actually feeling really hot and then saying he’s hot when, when you know sort of hot and cold flushes and really, really shivery skin.

And, and in what sort of period of time would this develop?

Probably if you say if he’s grizzly one evening, then the next morning he’ll probably wake up with the runny nose and by that evening then he’ll have the full lot probably.
 

Meg has interstitial lung disease and complications from flu-like symptoms escalate within a matter of hours.

Meg has interstitial lung disease and complications from flu-like symptoms escalate within a matter of hours.

Age at interview: 39
Sex: Female
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It starts like any child with a cold, with a runny nose feeling a bit miserable, probably goes off her food a bit. But it does escalate very quickly, within a matter of hours.

Okay.

So where the average child could have the chest infection for two weeks, not taking antibiotic and can move into the lower chest, with Meg within five hours it can go from upper respiratory to lower, lower chest. 

And what are the signs that you, you know to look out for?

Fever, fever is the main one because that means that there’s an infection that she’s fighting.

And what, how, what is high? What is, is there a particular?

There is, there is and a lot of people think that anything over 37.4 is a fever, so for Meg I don’t worry at that point. I don’t worry at 38, when she hits 39 I worry.

Yeah.

If I can get it down with Ibuprofen or Calpol within four hours then I still don’t panic. 

Yeah.

If I can’t get it down within 8 hours then I know that there’s a problem.
Parents said they were aware of the signs when their child’s symptoms was deteriorating and they needed to seek medical help. A sign for Lyndey that her youngest child’s flu-like illness was deteriorating was when he developed ‘an incessant cough.’ When her son’s breathing is affected Hyacinth knows that it’s more than a normal cold. Matias is ten years old and is non-verbal. He doesn’t cry for attention, so his parents know that if he is crying he is feeling very unwell. Arthur, who has Down’s Syndrome, is also non-verbal and his parents realised he was touching his ear a lot, which was obviously causing him pain. 

Parents also sometimes just knew or described a gut feeling when the illness was more serious than a cold. Nia explained that for her it was ‘just experience and knowing your child’ and Georgina said, ‘I am very sensitive to my son. I know when he is not well, I see the colour of his face change.’

Because parents were very sensitive to any changes in their child’s health they felt they knew when their child needed care and really appreciated doctors who knew this and responded quickly. Those parents who had other children sometimes felt more confident in recognising that an infant was particularly unwell, while a 17 year old mother of a 3 month old baby with Down’s Syndrome said she had initially had her concerns about her infant dismissed as a ‘sniffle’ by the GP (the baby developed pneumonia).

See ‘Complications of flu or flu-like illness’.
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