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

Deciding when to get medical help

When children with a long term medical condition or disability have flu or flu-like illness they can develop complications and deteriorate quickly. Hospital treatment may be needed. The parents we spoke to told us why they decided to take their child to see a doctor rather than continue to manage their care at home.

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

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

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Age at interview: 40

Sex: Male

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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.

Some parents spoke to their GP or child’s specialist medical team for advice at the first sign of flu or flu-like illness symptoms. Ruth’s daughter frequently went to hospital when she was very young, but now her parents manage any flu-like illnesses at home by staying in telephone contact with their GP. Ruth says keeping in contact with their GP is “a bit of a back-up for us.”

Ruth keeps in contact with the GP and the hospital if her daughter’s symptoms are getting worse to get advice about when to go to the hospital.

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Sex: Female

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I should say that what we do, also do is really keep in touch with our local GP practice when these attacks are happening. And sometimes the out of hours service as well so they, they know what’s happening as well. We’ll often sort of ring up during the day for advice if you see what I mean…

Oh okay.

…so that they know it’s going on. You know just for a bit of back up for us but and also just to, yeah like make them aware that it’s happening and that you know we may need to be getting down to the hospital soon and to just get advice as to, sometimes when to go. Like the GP practice are often very keen to keep a child out of hospital. The hospital are often a little bit more, “Come a bit earlier.” Then, you know, and we’re somewhere in between, if you see what I mean, so we just kind of keep in touch with everybody just to make sure…

Okay

…that it’s not just us sort of, if that makes sense?

Ella’s parents stay in close contact with her hospital renal specialists when she is ill.

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Ella’s parents stay in close contact with her hospital renal specialists when she is ill.

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Age at interview: 32

Sex: Male

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And what do you do? I mean, do you manage it at home? Do you get to call the doctor?

It all really depends on, on how Ella's sort of presenting at the time. If we find out that her temperature's fairly high, we will try and - well, we do give Calpol here. And we'll probably leave it two or three doses of Calpol before we sort of start thinking we ought to talk to a doctor. But sometimes the Calpol just tends to manage the, the temperature.

Okay.

That's it. And then because of all her other things, and because we know Ella so well now, and we've learned over the years that it's not always a bad thing to just be in touch with somebody like a doctor, just for some advice. Because you know, it's alright thinking 'oh, I don't to be a burden to the doctors if it's about nothing' but when you've got a poorly child to start with already, if you don't do it and something happens, you'd never forgive yourself. So we always think right, we'll give it a few hours, and if she seems to either get worse in that time then we don't ring we just tend to pick her up and take her straight to our local hospital. Where we do have open access there, so we can just literally turn up, unannounced. But if we think she's not right and we just need a little bit of advice as to whether they think they ought to have her in and do things, then we will phone.

Okay.

And the majority of the time it's just because even though the temperature's coming down with the Calpol, she still might not start eating or she might not be drinking. And obviously we know the implications, that obviously if she doesn't drink it can cause further problems that can be irreversible, so.

Often parents would contact a doctor if their child’s temperature was not going down despite giving several doses of paracetamol or ibuprofen. Ella’s parents usually give her two or three doses of Calpol (paracetamol) before contacting her specialist medical team. Fiona’s seventeen month old daughter has interstitial lung disease. If her temperature does not go down after two lots of medication, then she phones the hospital ward where she has open door access. Michelle says she would go to the hospital if Jack’s temperature reached 40 degrees.

Other parents sought help when specific things happened, for instance if their child stopped drinking fluids, or if a cough was not improving. Parents of children with asthma had learnt from their asthma medical team when to increase their child’s inhaler and how to manage with medicines at home. Parents found it very stressful watching their child struggling to breathe and would contact a doctor if this persisted despite using asthma medicines. Parents of children with Type 1 diabetes said they needed to get the child to hospital when their ketones were dangerously high. Otherwise they tried to manage at home. Some parents, like Lyndey,Michelle and Jo, said that they just knew their child needed to be seen by a doctor.

Lyndey has learnt from previous episodes of flu-like illness that when her son starts “incessant coughing” he needs to go to the GP to get antibiotics.

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Age at interview: 35

Sex: Female

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What about any other symptoms, fever or?

Oh yeah. He’d have a fever, yeah, yeah.

Would that, at what point would that start going up and?

I’m trying to think now. I think it varies from virus to virus doesn’t it. Sometimes it’s worse than others and it isn’t always that the worst fever means the worst wheezing. It isn’t always that. Sometimes the wheezing can be almost independent of a fever. But certainly they would be snotty. I guess it just depends on the cold doesn’t it.

Yeah.

It depends on how serious it is and whether it will end up with an ear, throat, chest infection or whatever. I do know, with my youngest, that when he does start the incessant coughing, as I defined it earlier, when he does start that with all the inhalers as well, that’s the point when he needs antibiotics.

Right.

And if I explain to a doctor, “He’s cough cough coughing.” They normally say, “Oh that doesn’t mean he needs antibiotics.” Because for most children it doesn’t but it does for him. If that’s the point at which, if you give him antibiotics, twenty four hours later he’ll be better and I know that and that’s fine with…

Okay.

…my GP.

Mirella gives her son the maximum dose of asthma medicines she can give him at home and if he is still struggling to breathe, she goes to the hospital.

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Age at interview: 36

Sex: Female

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I think it’s monitoring the symptoms and, and obviously you know if they pull their ribs in and, and, and you can see from here in the throat and, and with their stomach. My son often when he’s really bad you know starts shifting shoulders every time he’s breathing in. It is, it’s just I don’t know I guess it, it is still looking at the symptoms and you know you own child quite well, and I did also buy a little oxygen monitor, the sort of Sats meter, ‘cos we always you get discharged from hospital if, if the oxygen levels are certain amount or above, so then for me that’s good indication that if I can look after him with the inhalers at home and the oxygen levels are high enough then I’m more relaxed and confident to stay home. And obviously if we put the maximum dosage of medication I’ve been told I can give home and it’s still, he’s struggling then obviously I would then go to hospital, that’s for peace of mind for me whether it’s the right or wrong thing to do I don’t know. But it, I like to work from, I know the facts and then I decide where I go from, and so far it’s been working quite well and my consultant was quite happy with it.

Evie doesn’t tend to tell her mother how she is feeling but it’s usually obvious when she isn’t well. When Evie has flu-like illness Jo likes to see her GP after twenty four hours to check whether or not she has a chest infection.

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Age at interview: 38

Sex: Female

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Generally she doesn’t really tell me if she’s not feeling great. I can just tell by her. I have to, to watch Evie. I have to see that she maybe doesn’t want to play as much or she’s a bit tired today, she’s off her food and the main one is the temperature. You know, I constantly put the temp-, the thermometer in her ear just to check how she is doing but yeah she’s doing really, really well.

Ok. And so if you feel that she’s off

Yeah

A little bit so how do you manage I mean apart from checking the temperature?

Just, I just give her the paracetamol. I give her Calpol. That’s all I do give her and then if I feel that I can’t manage it if the temperature isn’t coming down or she’s not picking up with food. You know, if she’s not, she’s not drinking much because it’s difficult to get Evie to do any of that. With her big sister I could explain to her, you know, “You need to take a drink. You need to do this.” With Evie not so easy. So if I felt that that was the case I would obviously visit my GP first of all.

And for how long do you wait before taking her to the doctor or calling the doctor?

Not too long actually. Probably depending on the temp- how high the temperature was I try to leave it 24 hours, you know, because you know lots of children do pick up after then. But yeah after about 24 hours I usually then decide like. I, I like them to maybe listen to her chest. See what it sounds like because I know that she has very quickly developed, you know, chest infections when she was younger. So I like to know whether there is anything going on in there or whether it’s just something I can manage at home. I usually just at least do that, at least go to the GP and, you know, give, let, give, get her once looked over and they are usually very happy to do that for me.

Sarah and Susan both have children with Down’s syndrome. They said they would normally go to the doctors after forty eight hours of managing the child’s symptoms at home.

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.

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Age at interview: 37

Sex: Female

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So initially we'll treat it with like Calpol. Try and reduce the temperature down. And then normally, if it is just a general cold, within two, three days, he'll start to perk up again. So he'll have maybe a couple of days off school, he'll start - after the first day he'll start to eat, even if it's a yoghurt, and we'll know that he's getting better or it's just a general cold. Last winter, we had I think it was, two or three episodes where after the second and third day there was no getting better, so then we'd go to the doctor. It is often, we're often told it's a virus or a cold so there's nothing they can do.

Yeah, I think - I tend to do a couple of days [baby noises], because if we kind of go to the doctors after a day or two, they tend to say "It could just be a cold, it could just be a virus, come back if it doesn't get better." So I always, even though my husband says "Take him to the doctor." You're kind of like [sigh] 'But if I take him to the doctor, they're just going to say come back in a couple of days.' So as long as he's taking fluids in, I'm quite happy for a couple of days just for him to chill out and be sort of like Calpol medicated, paracetamol, to try and - the temperature comes down with Calpol, with paracetamol, but without it, it wouldn't. So.

Yeah. So at what point do you make the decision to take him to the doctor?

Pretty much 48 hours. I give it 48 hours and if things still aren't improving, then I go to the doctors. And then I can say to the doctor "It's been like this for 48 hours." Because if I took him on the first day, the doctor normally says "Give it 24, 48 hours." So we do like two days, and then if it's not getting any better we go to the doctor.

Okay. And apart from Calpol do you give him anything else, or?

We sometimes do the paracetamol and ibuprofen every couple of hours, so then you can keep the medication going into the system. But that's pretty much it.

So it's the- kind of over counter the medication.

Yeah.

And also keeping him indoors.

Yeah, and keeping him hydrated is the main thing, I think, for him. Because he can - we can all live without food for a couple of days, but just the fluids.

Making a judgement about whether their child’s symptoms were serious enough to be seen by a doctor became easier when parents had more experience of flu-like illness in their child. As the child got older they might also be able to explain how they were feeling. Also ‘knowing’ their child gave parents the confidence to make a decision. During El’s first flu-like illness, Clare waited a week until seeing a doctor because she was worried about taking a child in with flu-like illness to her GP surgery. Now she says if El has flu or flu-like illness again she would go to the GP sooner. During one episode of flu-like illness, Mirella tried to manage at home for quite a long time because she didn’t want to “go [to hospital] too often to cause a fuss”. But now she would go sooner. Mirella said that, “over the years you kind of develop a gut feeling” about when to go to hospital.

Before Waj’s daughter was diagnosed with cerebral palsy she was getting lots of flu or flu-like illnesses and she was taking her to the doctor all the time until it was explained to her that her daughter’s immune system is weaker. Now when she starts coughing, Waj gets prepared to manage her daughter’s illness at home for as long as she can.

(See ‘Managing flu or flu-like illness at home’.)