Fiona

Fiona’s daughter Meg was diagnosed with a rare lung condition, interstitial lung disease (ILD) at the age of 7 months. Meg’s on a continuous course of preventative antibiotics which minimize her risk of getting ill. If Meg falls ill with a flu-like illness she’s quickly taken to hospital as her condition can deteriorate rapidly.

When Fiona’s daughter Meg was only 3 months old she started showing symptoms of respiratory distress that persisted for weeks. Their GP ran various tests on her but nothing was found. On a holiday in Dubai, at the age of 6 months, Meg fell ill with very high temperature and was hospitalized. She was diagnosed with severe Atypical Pneumonia and put on a strong IV (intravenous) antibiotic. They stayed in hospital for 2 weeks and, armed with a list of questions, were encouraged to see a specialist once back in the UK. Within 5 days of returning to the UK, they saw a pediatric pulmonologist and Meg was diagnosed with interstitial lung disease (ILD).

ILD is a name for a group of lung diseases which affect the tissue around the air sacs of the lungs, causing difficulties in lung functioning. Doctors are not sure of the cause of Meg’s ILD, but it’s thought to be caused either by Bronchilitis Obliterans (a rare lung disease) or Neuroendocrine Hyperplasia in Infancy (NEHI) (a non-progressive lung condition in infants). Fiona’s daughter is showing signs that she is likely to outgrow the condition over time.

Having ILD means that Meg tends to pick up colds and viruses easily and she can take a long time to recover. Fiona says they try to avoid her catching viruses by avoiding crowded places, children’s play centre’s and playgroups, especially in the winter, and they never travel by plane. Fiona breastfeeds her daughter which she says can provide her some protection against illness but is also comforting during an acute illness. Meg is on continuous preventative (prophylactic) antibiotic medication, to minimize her risk of getting ill with a bacterial infection. Fiona says she finds this reassuring and says it’s been obvious that the antibiotics have made a difference to her daughter’s health. If her daughter does fall ill with a viral illness, Fiona initially tries to manage the illness episodes at home and only if Meg’s breathing gets difficult or Fiona is unable to keep Meg’s high temperature down after 48 hours with Paracetamol and ibuprofen, she takes her to the hospital as Meg’s condition can deteriorate very quickly. Fiona has direct open access to her local hospital and, whenever needed, their respiratory consultant in a regional specialist centre is only a phone call away. As Meg’s condition is rare, whenever she’s admitted to the hospital she is seen either by a consultant or a senior registrar.

Meg’s lung condition has had a big impact on family life and extended family. Fiona says she tends to get very worried and stressed about her daughter and is also concerned of the emotional impact on her older daughter who is only 3 years old. Being in contact with a global network of other parents with children with ILD has been very helpful for Fiona for sharing advice and emotional support.

Fiona finds it difficult to get an appointment for Meg to see her own GP. She won’t see the nurse and often she manages her illness at home until she decides she needs to go to hospital for tests.

Age at interview 39

Gender Female

Before I was more confident with what, with how Meg, Meg’s illness plays itself out. When I wasn’t sure exactly what to look for and what was going on

Yes.

I did, my first port of call was on out of hours

Okay.

if it was, or my GP but again I could never get in to see my GP. So [um] in a sense I managed the, well it’s resulted in me managing Meg’s illness at home to the point where I feel I can’t any longer, and that management is pretty much what my GP or the NHS triple one or an out of hours service is going to, they’re going to do the same for me that I can do for my child. So I do it here at home and when I feel I can’t any more I go in to the hospital because then I know I need tests and an x-ray done.

In the past my experience with the GP our family GP, I must be specific about that because if I would just see a locum or anyone who didn’t know us very well, it, it, the attitude was well wait until you see your GP and then he’ll look into it further. That was the kind of attitude. Initially he was and always has been very helpful, very methodical, would go through things very carefully. Cover all the bases, tick all the boxes and he was very communicative and understanding about Meg and our situation but he just didn’t have the answers. He just didn’t have the knowledge. It’s just the awareness is of interstitial lung disease is not really out there with the information. But I will never see a nurse, it doesn’t matter what time of the day or night, if my only option is a nurse I won’t go to see a nurse anywhere. Currently my GP as I say I struggle to get an appointment anyway, I don’t, I haven’t seen my GP in maybe 8 months with Meg, I will probably only see him again when I need the repeat for our Azithromycin renewed.

Yeah. The prescription.

Yeah.

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Meg has interstitial lung disease and uses a prophylactic antibiotic. It is difficult to get an appointment with her GP but her mother has open access to the children’s ward where they run tests when she has a flu like illness.

Age at interview 39

Gender Female

What, I manage most of her health issues at home, and they vary from lack of appetite to difficulty in sleeping, to random rapid breathing every now and again or a dry cough. The trigger for me is if she has a temperature that I can’t keep down for longer than 48 hours, that’s when I start phoning.

Yeah.

Or getting appointments.

And would that be, the appointments would be your GP, with the GP.

I would love the appointment to be with the GP, but I can’t get an appointment with my GP. We, we live in an area where the demand is far greater than the service they can provide.

Okay.

And I would not be able to see my family doctor within an hour or two. I would have, might have to wait a week so that doesn’t serve me. What I do have is open access at a local hospital, and although it’s not where the respiratory unit is I know the consultants and the staff very well and they, they are brilliant at taking my lead and managing whatever Meg needs. So that’s where I go. I go into hospital with Meg which is not ideal.

They do the saturations and the heart rate first to see how hard she’s working to breathe. And they check the saturations, they count her breathing reps per minute. And then we just wait to see the consultants, and the consultant will then have a chat to me, see what the symptoms are, discuss what we’d like to do, and because she is on an antibiotic as a prophylactic, the chances are that she doesn’t have any bad bacteria in her chest, but they then do run a series of blood tests just to check that there’s nothing else going on anywhere else in the body.

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Taking a low dose of antibiotic has worked well for Meg, who has interstitial lung disease. Her mum says she no longer needs to panic and watch her all the time when she has flu-like illness.

Age at interview 39

Gender Female

I learnt very quickly that you don’t need an antibiotic for everything. Which is also why when Meg is ill and we go into hospital and they run a battery of tests we sit and discuss it, does she, do, or the consultant will sit and say to me, Do you understand why she doesn’t, why I’m not prescribing an antibiotic? Do you feel she needs an extra antibiotic? And I’m very grateful that she is on one because there is a need for it. It’s helped, it’s made a huge difference.

Oh okay.

That’s made a huge difference.

How long has she been on that now? When did they start it?

She was seven months.

And how was that decision, how did that come about?

The doctor we saw privately advised us to go on Azithromycin because all their lung children were on it, specifically during the winter months. They would prefer them to be off it in the summer, now some children cope with that, and some children don’t.

Because Meg had such a severe pneumonia episode they decided initially to put her on two mls a day and she was on that for three months.

Okay.

And then we went onto it, just to get us over the winter, and then we went onto it Spring/Summer three times a week. And we’ll continue on that throughout this winter and see how she fares.

Sorry the question you asked, oh what are my concerns, pros and cons?

Yeah, pros and cons for her now.

This is a topic that comes up quite frequently amongst us parents, or mothers and fathers whose children are on not only antibiotics but also steroids as a form of maintenance and control with lung disease. And there are people who have very strong opinions about antibiotics. I think there’s a, there’s definitely a time and a place for it. I think because of how I grew up I, my natural instinct is to resort to an antibiotic, I have seen how well it has worked for Meg and the difference it’s made to our lives. I don’t feel stressed out any more about her illness, I don’t feel like I need to panic and watch her all the time. In the back of my mind I know she’s on something that if there’s a bacterial infection in her lungs she’s going to be okay. I’m probably not going to land up in hospital with it. So it’s, I’m sure that there are cons to it, I haven’t looked into it too deeply, mostly because I think she has improved so much I’m hoping that she won’t need it in the long term.

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Fiona doesn’t take Meg to play centres in the winter. She is particular about hand washing and avoids taking her on public transport.

Age at interview 39

Gender Female

And do you, do you restrict anything? Is there any restrictions that this puts on your, on your life as a family? Are there things you avoid?

Yes, I avoid play groups. I

Completely?

Completely.

Yeah.

Initially, especially in winter I won’t go to play groups. She loves those soft play centres, I, we go, I don’t put her in the ball pit, I just think there might be more germs there, it’s crazy. I walk around with antibacterial wipes, I wipe everything down. Antibacterial gel, so far touch wood it seems to have worked. But then she’s been on the azithromycin which is probably why it’s worked, you know why she hasn’t got ill. I am very particular about washing hands in the house, people coming in washing hands. I have I’ve very verbal about it, people know just to not share spoons and, you know lick things and share too much food and so yeah, I’m careful.

So your friends have sort of gotten used to

Yes they have.

used to it?

They have.

Yeah.

And trains and planes and…?

Planes no. I just, I’m very concerned about planes, very concerned about aeroplane flying. I do think that’s where she got sick on our way to [country name].

Yeah.

Cos I also think that her, she de-saturated in the air which I didn’t know could happen but I’ve since found out that it did.

Okay.

It could have. Trains I avoid, we travel by car.

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Meg’s older sister also needs support when Meg is in hospital, her father takes time off work and an aunt acts as back-up but seeing her sister so unwell has been very distressing for her.

Age at interview 39

Gender Female

It definitely had an effect on my younger child, sorry my older child. She could definitely feel our stress you know you talk about being worried about Meg and something’s wrong with Meg, and what is it. And so there was definitely everybody felt, felt stressed about it and during our hospital stays which weren’t very short, they were always quite long it was, it was difficult, it had a big impact. My husband had to take time off work, because we’re not from the UK and don’t have family living that close by yeah he had to take time off work to look after our eldest.

It definitely has an impact on our family in terms of just our routine is off balance because Mum’s not at home, she’s now in hospital with Meg. My husband has to take time off work. If he can’t my sister-in-law who lives an hour and a half away, and my, and my brother take the time off work so it really affects the extended family. My stress levels I’m learning to deal with but I’m not very good at it. I seem to just focus on Meg and often don’t realise that my eldest is still so young, and doesn’t understand everything that’s going on. And she needs a lot of affirmation, a lot of time with her spent one on one and I can’t always give that. She finds the hospital visits hugely traumatic.

Right.

Because we’ve had very difficult times in hospital with Meg she has seen what Meg has been through she’s seen the needles, she’s heard the crying, she’s seen the vomiting blood. It’s affected her very, very badly so we’ve had to work on desensitising her to it really because it’s affected our life. So we’ve had to just try and give her as many coping skills at the age of three that we can give her.

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

Age at interview 39

Gender Female

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.

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Fiona makes lists and charts to monitor any change in her daughter’s flu-like illness symptoms and if her temperature is not going down she takes her into the children’s ward where she has open access.

Age at interview 39

Gender Female

I go into sort of military mode, I’m, I make a lot of lists, I monitor her mood.

Okay

Signs of irritability, breathlessness. Whether she is walking around and playing or whether she is taking more breaks and just lying down on the floor which she does to almost catch her breath. I monitor that. Her temperature, I take her temperature routinely and keep a chart. And then I become very conscious about the food that she’s eating because she’s on an antibiotic I often worry about her tummy and so, I mean I do breastfeed but I don’t always know, especially at 18 months what they’re getting and what they’re not. She’s hydrated, that I know. But I’m sure there’s nutrients over and above that that she requires. So I’m very conscious about what’s going in to her.

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.

So what would you at this sort of, eight hour point what do you do then?

I phone the hospital, the children’s ward,

And is that regardless of the time?

Regardless of the time.

Yeah, because you’ve got the open access

Open door access.

Yeah.

And I go in.

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