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

Recovery from a flu-like illness

Louise: I found that I have -, 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. ‘Cos I compare him to his younger sibling and see, cos they often get ill together. So, I find obviously my younger son who has not got a chronic illness, he recovers very quickly. Whereas my other son is probably still unwell while the other one is sick. So, and also what I’ve found with my son, my eldest is that he can appear to have recovered, but then can quickly fall down with another virus. So his immune system takes a long time to get back on peak. There’s like a trail, yeah. And I mean, there has been times he’s been like a week off with a, with a bug. I’ve sent him to school for a week, but because that week, I didn’t manage it properly, he was unwell the following week, so it lasted a whole, nearly a whole month. So, yeah, that is, it can last quite a long time.

Interviewer: And you can see that because of his insulin needs?

Yeah, suffering lots of hypos. Looking drained because he has no energy from the hypos. Yeah, it’s quite hard to get back on track.

Antibiotics & advice to health professionals

Hazel: I mean obviously you don’t want to give your child antibiotics all of the time and you know we understand the effect it has on the wider community as well. And you know people are getting used to antibiotics but in Oscar’s case it’s just there’s no alternative because everything is just a bit worse for him. So in some children if they had an ear infection you can just go ok they can bear it for a couple of days and it will work itself out. With Oscar it won’t and he’ll be in a huge amount of pain because it’s just always a bit worse for him. And so, you know, we have to use antibiotics. And also you don’t want things to escalate. What is, you know, at the start a small chest infection if you leave it becomes pneumonia. You know, and you have to -, so for us we have to use antibiotics when it’s needed. With my other child for example if he got ill I would try harder to not give him antibiotics quite so quickly. And luckily he’s, he’s a very well person and very rarely needs these things. And also for myself I would try and hold off antibiotics a bit more but with Oscar it’s just, it has to be that way and, and we want him to be safe and antibiotics have helped him be safe.

I think communication is really important. Parents aren’t stupid most of the time and we just, we want to know what’s going on with our children and that there’s a plan and yeah, I mean just also incredibly grateful for the fantastic care that we’ve had. He’s a very, very complex child and I think we’ve been very lucky with the care that we’ve got. Just also I guess to listen to parents. You know they are the child’s experts. They’re unlikely to give you false information. So, yeah, I think it’s just really important to listen to the parents.

Clare’s story :

Interviewer:   Okay. Do you have a view as to when they should be prescribed, antibiotics?

Claire X: As rarely as possible. And, yeah, we, we try not to, you know, we would never go to the doctor with a cold and say "I need antibiotics." I just would never do that. They're, they're very precious things. Yeah, I think the experience that we've had has made me see that they need to be only used in the most severe circumstances. And the human body I think is generally speaking pretty good at shaking things off. The immune system's quite amazing, really. But, yeah. But there are some children who do need them. And, so yeah, I think we have to be careful and sparing with them.

Interviewer:   Okay. What are your thoughts about the benefits and drawbacks of giving antibiotics for your child?

I think - well obviously they, I'm sure they've saved her life on a number of occasions. So, I can't quibble with that. We, when she was taking a lot of antibiotics we were prescribed by a dietician some probiotics, which made a massive difference to her health. And also, I don't know if it was coincidence or not, but it seemed to stop the, the constant vomiting that she had as well. And I do wonder if there was a link between her vomiting an awful lot and the fact that she took a lot of antibiotics. So we were well aware of the fact that they were doing very vital work, but also not so good for her general health. And our hearts always used to sink a little bit when we knew she'd have to go on a course of antibiotics, because it just, you could see, it was not great for her. But she needed it.

I think because the nature of her condition is, is quite unique, we often know more about her history, about the global picture, than the people we're speaking to. And they're more than happy to acknowledge that. And I think that's one of the things I have appreciated the most, is that they do really listen to us as parents as well. And I've noticed sometimes I've taken her to hospital with just a hunch that something's not right, and I've never been dismissed for that. And normally I'm right about it as well. And I think I've always really appreciated the fact that the doctors have never said "Oh, it's just an anxious mother." You know, they've always really listened. And have acted. And I think a couple of times that's been really important for Eliza, that that's happened quickly. And I think sometimes parents are the people who spot things very quickly. And I think, I get the impression that the doctors know that, actually, I think.