Sarah

Age at interview: 37

Brief Outline:

Arthur is 4 and has Downs Syndrome which he was diagnosed with at birth. He was also premature, born at 34 weeks. He has no underlying conditions but does seem to be affected more than other children when he gets flu like illnesses. He has had two bouts in hospital with scarlet fever and tonsillitis. Arthur is non-verbal which makes diagnosis and communication about illness difficult, but he is learning to point to parts of his body which hurt during which makes it a bit easier. His mum says it is sometimes difficult to diagnose Arthur as he also doesn’t like people looking in his mouth, although their GPs are generally very good and try hard.

Background:

Sarah is married and is a full-time mum. She used to work in admin, but stopped work since she had three children and after her son, Arthur, was diagnosed with Down’s Syndrome. She is British.

More about me...

Arthur is 4 and has Downs Syndrome which he was diagnosed with at birth. He has no underlying conditions apart from the ‘general global developmental delay that affects him day to day’. Arthur gets the usual coughs and colds, but it seems to take him longer to get better than other children, such as his brother. Arthur is generally a well boy, although he has had two bouts in hospital with tonsillitis and scarlet fever. 

When Arthur gets a normal cold, it normally lasts about 3 days. Sarah, Arthur’s mum, will give him calpol and paracetamol every four hours to reduce his temperature. However, if Arthur is not taking fluids or eating properly after 48 hours, Arthur’s parents will take him to the doctor’s. Sarah and her family do not go to the doctor’s for ‘willy nilly’ things, so GPs tend to take them seriously and are pretty good. Sarah thinks that sometimes other parents of children with disabilities worry more and take their children to the doctor’s quicker. 

Arthur is non-verbal so can’t tell his parents what’s wrong when he is feeling ill. He is learning to point to parts of his body, such as his throat, but Sarah says they often still can’t tell exactly what is wrong with Arthur. She thinks it must be hard for doctors to diagnose him as ‘all they can go by is visuals’. Arthur also doesn’t like people going in his mouth so it can be ‘a bit of a battle’ sometimes taking him to the doctor. Sarah thinks that sometimes Arthur might get given antibiotics sooner if he was able to explain how much pain he is in. 

Arthur has had two bouts in hospital after having tonsillitis and then scarlet fever. Arthur’s immune system seems ‘worse than a typical child’ and he ‘picks up everything’. He had to take 6 weeks off of nursery last winter. Sarah and her family try and prevent germs spreading by washing their hands regularly and she will keep Arthur away from other poorly children. Arthur has an annual flu jab but his mum says he is generally well, so he shouldn’t end up in hospital with flu like symptoms. When Arthur is given antibiotics, he tends to improve after about 4 days, a bit longer than it seems to take others. Sarah feels that Arthur could sometimes be given antibiotics sooner than he tends to get them. She finds it hard to get Arthur to take them but sometimes mixes it in with yoghurt. She doesn’t worry too much about Arthur becoming immune to antibiotics as they work for him.  

Sarah has a good support network and her parents, mother in law and sister live nearby and help take care of Arthur. Sarah’s advice to parents would be ‘be confident when you go to the doctor’. If you think something is wrong, don’t just let the doctor tell you ‘it’s a bug or virus’, be a bit more assertive. Sarah would like to see better, clearer communication in hospitals, as well as better food for visitors/parents. She would advise health professionals to never make assumptions about what a child needs. She would prefer to treat Arthur’s illnesses on a ‘case by case’ basis and recognises that every child is different. 

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

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. 

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.

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.

Each time Arthur is poorly Sarah tries to weigh up the individual illness to see if he would benefit from having antibiotics.

But I don't think it would help - like I said, I don't think him having like a constant low dose over the winter would help. I think that's why I wait the 48 hours. Because sometimes some doctor might be a bit too 'Oh let's give them antibiotics, just in case'. So I feel like I contradict myself a little bit because - I don't know. I think it's just each, each time he's poorly, I think I try and weigh that as an individual illness, rather than 'Oh god, last time he was like this'. Because it might be a different infection. It could be, it could just be a cold, or - I don't mean 'just' the flu, but it could be a flu-like illness with no infection, or it could be tonsillitis. And I think if we wait that 48 hours, then it's more likely to be easier to determine which it is. I think.

Okay. So that's more or less your rule.

Yeah. Pretty much.

Okay.

I hope that's the right rule [laughs]. Everyone is different, I suppose.

Each time Arthur is poorly, Sarah tries to assess the nature of the illness to see if he would benefit from having antibiotics.

And tell me a little bit more about that earache? So he had these sort of flu-like symptoms?

Yeah, and he was just touching his ear a lot. So we kind of - again, it was a heavy, heavy cold. We assumed, we left it. I think with the earache I actually went, that was one of my earlier visits to the doctors. So I kind of took him, because he was touching his ear so much, we took him - I took him to the doctors, I think it was on the first day. But they said they couldn't see anything. And then when I did go back after the 48 hours, apparently it was obvious. So, which could have got worse, it could have got worse over the 48 hours - it might not have been obvious on the first visit. But, but I think when you take a child, especially a non-verbal child, to the doctors and they are constantly touching something, as a mother my opinion is that there's something wrong. And especially with a maybe, I think that, that is probably one of the times that they could have prescribed an antibiotic, maybe.

Sarah uses several information sources. She has found that talking to other parents on the Down’s Syndrome Facebook group has been really helpful, while recognising that Arthur may be different.

And where has your information come from, regarding sort of his condition and the way in which he could be affected by the flu-like symptoms?

Pretty much through just talking to other parents, really. I mean, we had a lot of it - when he was first diagnosed, we were given a lot of information from the hospital. They have a clinical nurse who specialises with the disability children, and she runs an amazing clinic every month for Down's, or a meeting for families with Down's syndrome. Google, good old Google [laughs]. If we're not sure, it's a bit of a Google. I try and keep to like the NHS sites, rather than Wikipedia and things, because I understand anyone can put anything on Wikipedia. So try- or even Down's Syndrome Association, they're really good. Their site. We became members pretty quickly with that, and you can call them. They have a line and you can ask questions, and go onto the website and things. But I think a lot of our kind of - if I'm not sure, there's a, like there's a group on - even a Facebook group for DS, for Down's syndrome parents. Just a post a question on there, and you pretty much get other people's experiences. But I think every parent still has to remember that every child is different. And although that worked for your child, although that's what, what was wrong with your child, doesn't necessarily mean that these symptoms are equalling that for Arthur.

Okay.

But it's a lot of communicating I guess, to other parents as well.

If Arthur had the flu-like illness, Sarah didn’t feel he would be seriously ill and need hospital treatment because he has the annual flu vaccine and he is generally well.

When he has these flu-like symptoms, how serious do you think flu-like illness or flu-like symptoms to be, for a child like Arthur?

I think they can be very serious. Because of the - especially. With Arthur, because it's - you assume - sometimes you assume it's something. Like he gets a cold, you assume he's got a cold. Or he's got a bit of a temperature, 'Oh, maybe he's getting a bit of' - because he has the flu jab annually, has had since he's been able to have it. So we kind of again, assume it's not going to be flu. But then I suppose we need to be open-minded about the fact that although there's a flu jab, there could be another strain going around that he's not protected, or none of us are protected against. We're, we're very - with Arthur we're lucky because he doesn't have the underlying medical conditions. I think if I had a child with Down's syndrome and he had the heart problem or the stomach problem, or if you speak to other friends that I know of through DSA [Down’s syndrome Association], they would maybe be very different and very - much more negative about the illnesses. But because Arthur is so well generally, I don't tend to worry too much. Until maybe we get to past that 48 hour period. Because there isn't a reason - apart from it taking him longer to get better, or maybe longer for the antibiotics to work, he shouldn't end up in hospital because of a flu-like symptom, because he generally is well. If that, does that make sense?

Flu-like illness affects Arthur’s sleeping patterns. His younger brother stayed with his ( semi-retired) grandparents so that Sarah could concentrate on looking after Arthur.

Was his sleep affected when he has the flu-like…?

Yes. Yeah. Because, because he can't - because it's all stuffy, he can't breathe. So, and especially with the tonsillitis, his throat's sore. So if he's only breathing through his mouth, he's - then that gets dry. So yeah, we pretty much don't really sleep much when he's poorly. He's not the best of sleepers anyway. He's, he's, he wakes three, four times in the night, and we have to resettle him, so at the best of times. But that's purely because he just wakes. But yeah, when he's - when he has poorly, when he has flu-like symptoms, he's, his sleep is pretty much - which doesn't help with the recovery, of course. Which makes, takes it - makes it much longer, because he's tireder. So then the daily routine goes out the window, sort of thing, because he might sleep for a couple of hours during the day, then wake up, then another couple of hours. So then because he's slept during the day he doesn't sleep at night.

Those occasions in which you have had to stay in hospital with Arthur, how you have managed?

Purely, I - we ship - we haven't had one while we've had [daughter], yet. Because this was last year. So we had [younger son]. But my parents - both semi-retired as well, which is quite cool, and very lucky - so we've kind of shipped [younger son], and they've had [younger son]. And then I've just solely been able to concentrate on Arthur I'm lucky enough at the moment that I don't work. So I haven't had to worry about the whole calling in to work side of things. So yeah, we've just - we're very lucky that we are just able to focus on getting Arthur better.

Sarah wonders why doctors don’t give parents up-to-date information about the child straight after a ward round.

I think the, the only - I think improvements would be just communication. So, clearer communication. It's like the doctors come round and they do their ward rounds, they look at the patient, they talk between themselves, they say "Thank you." And then they go. And then you're kind of - that was the first time. And then I, sort of like you kind of, 'Okay, so what's going on? So are we staying here longer, are we - you said when we came in it may be a 48 hour stay, we've now been here 24 hours, is someone going to update me? Do I need to get my husband to bring me in more clothes?' And the, the small things that make the stay - or would make the stay easier, I suppose.

Okay.

So, the communication between - But then, I see - but then I justify it because they're busy, and they need to get round, and they need to do things, so maybe that's why they're not communicating straight away. But yeah. And again, I suppose it's for the parents to - sometimes I think the parents have enough to worry about, that they shouldn't have to be thinking about asking what's going on. Maybe the professionals should think 'Let's talk to the, to the parent, and actually tell them what's going on.'