Karen

Age at interview: 50

Brief Outline:

Karen’s son, Alex has severe food allergies, and was diagnosed with asthma when he was 14 months old. Alex used to suffer from flu-like illnesses once a month when he was younger, but his condition has improved significantly since. Last year, Alex was involved in a clinical trial testing the usual flu vaccine spray in children with egg allergy, and although the trial is ongoing, Alex hasn’t experienced any negative effects from the spray.

Background:

Karen is a part time teacher, and her partner works as a full time train driver. Their son, Alex is 6 years old. Ethnicity: White British.

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Karen’s son, Alex was diagnosed with asthma and severe food allergies as an infant. Alex also used to suffer from flu-like illnesses at least once a month. His symptoms of fever, sore throat, and headaches would quickly develop into a chest and ear infection. Because of his food allergies, he was regularly on inhalers, but when he was ill with the flu and his inhalers didn’t work, Karen often had to take him to the hospital, where he would be treated with nebulisers and prednisolone steroids overnight. Alex’s was diagnosed with viral wheeze at this point, but Karen suspects that the doctors were reluctant to diagnose anyone under 2 with asthma. When Alex was 2 ½ years old, he was referred to respiratory specialist, who advised them to use Montelukast in short bursts at the first signs of a cold or flu. Karen considers this appointment a turning point because since then Alex’s condition has improved and his flu-like symptoms rarely develop into severe infections anymore.

Generally, Karen is satisfied with the care that Alex has received so far. She found it most helpful that they could see the same GP over the years. Their regular doctor knows Alex, which saves Karen having to explain Alex’s medical history each time. He also lets Karen keep a course of prednisolone at home, and he trusts her to know when to give it to Alex. For Karen, the prednisolone is a last resort, but being asthmatic herself, she knows when and how to administer the medication and the inhaler. She is concerned about the long-term effects of Montelukast and prednisolone, but she feels that she doesn’t have a choice. However, she finds that doctors are willing to involve her in Alex’s treatment and discuss any drug prescriptions with her. She also found that most health professionals tend to go out of their way when they are treating Alex, and they tend to spend more time to reassure him.

Karen had to go through a lengthy and frustrating process of acquiring a flu vaccine for Alex, one which is suitable for children with egg allergy. Last year, Alex was involved in a clinical trial testing the usual flu vaccine spray in children with egg allergy, and although the trial is ongoing, Alex hasn’t experienced any negative effects from the spray.

Karen and her family try to live as much of a normal life as possible, but she finds it very hard to make plans because Alex’s illness is so unpredictable. She always has to be aware of the closest A&E whenever they travel, and she has to be ready to cancel any plans at any point. However, Karen finds that Alex has a fairly high pain threshold, which has facilitated the management of his conditions. It is important for Karen to teach Alex to be responsible for his condition, and not “keep him in a little box and control everything he does”. Karen also thinks that self-management helps Alex’s confidence. She lets him have school dinners, and liaises with the school’s kitchen staff about the menus. She thinks that trying to avoid all germs is not practical, and she wouldn’t like Alex to develop an OCD beside his asthma and allergies. Karen is grateful that Alex is fairly “in tune” with his body, and he is able to tell when he feels unwell and needs to see a doctor.

Karen’s message to health professionals is to listen to the parents because no one knows their child better than they do. Similarly, she would like to let parents know that even if things are difficult in the present, their children’s condition may improve as they grow older and as their medication changes. So, she would advise them to do the best they can and to be flexible about new treatments.

Karen gives Alex paracetamol or ibuprofen and plenty of fluids when he has flu-like illness. She monitors him closely and takes him to his GP or A&E if his symptoms worsen.

When it comes to as soon as he has a cold of course instead of just thinking, “Oh well he’ll be fine in a couple of days.” We’re always wary that, oh no here we go we’re going to start to go downhill. We’re either going to get the asthma or we’re going to get flu-ish things. And so it’s just a question of, of really monitoring and being on top of it. And you, with him you know that he, if he won’t go to sleep it’s normally because he’s got headache or he’s got ear ache, and then that’s probably because he’s got a temperature or he’s got an ear infection coming. And so [huh] I think it’s just without over fussing just trying to be really aware of things and nipping them in the bud and saying, “Right ok we’ll go down to the GP or if need be we’ll go to A&E and we’ll do something about it.” You can’t just let things linger with him and say, “Oh in a couple of days he’ll be better.” Cos you prob-, in a couple of days he’ll probably be worse if you don’t do something about it.

Yeah and for how long does his fever last with the flu?

He’s normally . It’s normally only two or three days as long as obviously he’s medicated for it. And normally Calpol or Neurofen or something like that is enough to sort that out.

Ok. So you. And what else do you do to manage it at home?

If he’s got a flu-like? I tend to just keep him warm, try and keep, he’s not the most calm and relaxed child on the planet so keeping him calm is, is a big, big job cos he wants to be running about and he’s got boundless energy so. Just try and keep a lid on that and just make sure that he’s drinking plenty and we’ll give him Calpol or Neurofen (ibuprofen) and if he’s got a fever or an earache. 

He has multivitamins anyway because of the allergy thing. He was prescribed those by a dietician. He has multivitamins and I try to make sure that his diet. Again I’m lucky he has never met a fruit and veg that he doesn’t like. And partly because of that, partly because of his allergies anyway he has a pretty super diet. He doesn’t eat much processed stuff And he eats a lot of fruit and veg and I try to really make sure that that side of things is, is, is, you know, really up to scratch because I think not only does it help with the allergies out of necessity but I think it can’t hurt the immune system side of things.

It has been very beneficial to see the same GP each time Alex is ill; their practice has made this possible even though most patients see any member of the GP team.

And it’s been really helpful to us to have our doctor that we now see and have seen for a long time said, you know, because generally you make an appointment and you see any GP and he said, “No I think because you’re obviously a regular visitor and it’s good for me to have a handle on all the conditions and the background without you having to go through it every single time.” And that’s really helped I think seeing one GP who knows Alex and knows the situation and you don’t have to go through every single tiny little background piece of information again and again.

So continuity of care is crucial here?

Yeah, yeah. I think so, think so. And somebody who just knows your situation and. And also unlike our current doctor has, let’s us have a course of Prednisolone at home because a lot of the time we were ending up going up to A&E and one of the main reasons we were there as well they got us a course of Prednisolone from the, from the pharmacy which took forever. And obviously they could give it to us in the hospital but then they couldn’t give it to use to take away without going through all the paperwork. And it, that was another thing that’s really be crucial to us, to be able to be, to be trusted I suppose once, once the doctor built up enough of a relationship that he knew that I would manage it sensibly and I wouldn’t just give it to him unnecessarily which is the last thing I would ever want to do. I think the last thing anyone would want to do. But having that supply of Prednisolone here at home so that if it’s late at night or early in the morning when you’re on holiday or, you know that because the condition can go down so quickly you know that you’ve got that available without having to go into extreme measures straight away. And quite often a day or two of Prednisolone would make the difference with the wheezing.

Alex’s doctor said to look out for early symptoms of flu-like illness as it could affect his asthma.

Initially when you child was diagnosed with asthma when he was initially diagnosed with asthma and, [interrupt] with asthma and all his other allergies were you aware or were you made aware of the other concerns regarding sort of flu-like illness and its impact on his underlying conditions?

I think yeah it was, it was quite specific though. It was one of the [hospital] doctors that specifically had the discussion. And he was the one who initially said, “Oh you, I highly recommend you to sort out a flu jab for him cos up until that point no one else had mentioned it. So…

Ok. And did they, anybody sort of, any doctor or nurse tell you about what you should like or you should look out for early signs and symptoms of a flu?

Yeah that particular, that one particular doctor again he did say. Because he was explaining at that point the symptoms of the asthma when he thought we should seek medical help. And also as you say to look out for the early signs of, of flu-like symptoms because he was more likely to, obviously go on to get the asthma symptoms if he had the flu-like illness first.

When Alex was younger he couldn’t have the flu vaccine because he has an egg allergy but he is now able to have the nasal spray vaccine.

The flu vaccine thing has been quite a frustrating one for us because they first suggested he should have it must have been when he, the first or second time we were up in A&E. So he must have been around 14 months old, something around that age. And [ah] when I approached the GP she said she’d have to look into it more because of the egg allergy. And then she actually phoned me and said he couldn’t. There wasn’t an egg allergy-suitable vaccine for children and he couldn’t have a flu vaccine which was a bit disappointing and a bit worrying. And I thought, well that’s odd because surely the consultant who recommended it up at the [hospital] must have known if there was or wasn’t. So eventually I saw another GP but it, it took a while because first of all I took a while to think about it and then when I saw another GP about something else I said, “Oh and by the way can I just check.” And then I was told, “No there was an egg allergy-suitable vaccine for children.” But that it was a specialised thing and it would have to be ordered I think they said 12 and they didn’t need 12 in their practice. So what they would try and arrange was to order it with another local surgery and then, or even two and then split it. And so that took quite a few months of messing around. So I believe from memory that he didn’t have it for two years and then by the third time they had. I had to go and see them again and talk to a receptionist and ask about and the practice manager and ask about getting the vaccine in. And so then he had the, it was a jab which he had for a couple of years at the GP. But each time I had to contact the receptionist and say, “Look it’s about that time could you please get it organised.” And it would take quite a long time to sort out. But we, he did have it and then last year he was involved in a research project up at the [hospital] where they gave him the, they gave children with egg allergy the spray that all children now have, just the same spray as everybody else. And luckily that was fine. He didn’t have any adverse reaction to that at all. So they advised that this year he should be able to go to the GP under normal circumstances and have the spray that all children have. So apparently they’re not recommending that necessarily for all egg allergy children at this point but because he took part in the study and it was ok then it’s ok for him but they are still working through the results and the recommendations I think for all children with egg allergy.

Alex can deteriorate rapidly when he has flu-like illness. Planning to do things as a family was difficult and they often had to cancel play dates.

But so there’s a lot of plans that you make and things that you’d try and do and, and things that you want to do and the trouble is it’s so unpredictable. And it happens so quickly. He can be absolutely fine one minute and then as you say because of the underlying conditions he’ll get something that will just be a sniffle to anyone else and you can, you know that it’s going, it’s going down. It’s going the wrong way. And the two things that have saved us with that other, the medications that having the prednisolone at home in my hand and not having to go and seek it, and having the montelukast which if we’d put it in early enough seems to stop. Because, you know it was very unpredic-, with that ending up in hospital every five min-, and we ended up in hospital on holiday, visiting people, you know it was just, it was just you, very very disruptive and I was in hospital all down in [town] near [city]. And so I was staying with him and [partner’s name] had to come back to work and [partner’s name] works shifts anyway. He’s a train driver so he couldn’t really not go into work and he, and he works shifts so it’s not easy even if he can know when he’s available or not available. And so the whole being in and out of hospital thing was, was really difficult and made things very difficult as a family just to do anything that a normal family would do from holidays down to visiting people and trips and things you plan. 

And, and also his, his relationship with other children because if you’re constantly having to say, “Oh no I know we said we’d come to the park but we can’t because he’s not well.” And “I know, oh sorry I know you were supposed to come around to play but you can’t because he’s not well.” And then and children get fed up. You know, they’re fickle things [ha]. And if the happens a few times they think, oh well I won’t bother with him them [hah]. Cos you know there are other children I can play with who actually will turn up. 

Karen said she agonised over deciding whether to allow Alex to go to school or nursery when flu or flu-like illness was going around.

And if there is a bad case of influenza at school, at his nursery what do you do? Do you try to keep him at home or there’s no point?

I’ve tried. I’ve agonised about that one cos the feeling of dread is, well ok well these other children might get flu and it, you know, it will be a few days of them feeling bad and it will be water off a duck’s back whereas if he gets it. But I’ve come down in the end on balance to saying, you know, I think it’s not, it’s not really practical to keep him away. So you just have to let him take his chances and if there is something going around he’ll probably get it and there you go [ha] just like all the other horrible things that go around.

Karen appreciates the extra effort some doctors make to talk directly to her son and emphasises that if doctors listen to the parents they will get a better working relationship.

I think, I mean generally speaking absolutely everybody that you come across in the hospital from the people who weigh him when we go up to his general allergy clinic to… we had students, one of the times when he was in hospital, he was about 18 months old we had a couple of students in and it was the funniest thing ever cos they, they were scared to death of touching him. And they kept, this one he was perhaps 15 months old and this one person was talking to him like a fully grown adult and saying, “Thank you so much for letting me examine your chest.” And it was just and they were lovely, they were lov-, and generally speaking people are particularly with children I think. They’d go out of their way and you know. And as long as people explain things to children. You know, this is a stethoscope. You have seen one of these before haven’t you? Just occasionally you come across somebody who doesn’t take that time and it can be such a different experience for the child. And it, it’s. I know they are pushed for time and they’ve got a million things to do but that extra bit of time with the child I think is really very much appreciated by the child and the parents. And I think it makes their job easier in the long run as well because no one wants to be holding down a struggling child and taking two people to do it.

And any advice to health professionals?

Listen to parents. Listen to parents. I think it’s, I think it makes their job easier if they listen to parents. I mean I’m not that parents are always right and I’m sure they sometimes have to deal with some very difficult parents but I think it helps if the lines of communication are open both ways and you feel like you’re being received as well as, and involved. And I think in the same way as I try and involve my child in his illness it, it’s the same. Obviously the health professionals know more than I do but if, if I’m feeling involved then it helps me to do what they want me to do [ha] in terms of managing my child’s illness. And, and if you know why you are doing something it’s a whole lot easier to do it or deal with it even if it’s like we were saying earlier, antibiotics or steroids, you’re worried about it but you’re not going to take it and not give it to them because you know why you’re doing it cos you feel that you’re part of the process.