"It can feel very frightening, but with time comes confidence and knowledge"

Sarah Johnson's sons Thomas, 13, and William, 3, have asthma. The whole family is learning to adapt.

VIDEO: Watch Sarah talking to Asthma + Lung UK about how she helps her son's stay well with their asthma. 

Getting a diagnosis

Sarah Johnson“On quite a few hospital visits we were told our youngest son William, who’s three, had bronchiolitis or a viral-induced wheeze. Then on a later visit, which I think was our fourth that winter, a doctor said he needed asthma medicines and put him on a preventer inhaler, reliever inhaler and Montelukast.

“My eldest son Thomas, who’s 13, was diagnosed with asthma after a year or so of getting pains in his chest, mostly after or during exercise. One day when he was 12, he had particularly bad pains in his chest when he was playing rugby and started panicking. I took him to hospital and he had ECG tests done for his heart, but then the doctor tried him with a blue reliever inhaler and it made an almost immediate difference. He used it for a while but needed it more and more often, so the doctor decided to put him on a preventer inhaler as well."

Understanding asthma has helped us

“When my children were going through the process of being diagnosed with asthma, it was a very stressful time because I’d never come across asthma before. I thought an asthma attack meant someone would struggle to breathe. But with my children, their asthma symptoms tend to be severe chest pains, and William’s wheeze sounds like he is puffing or like a little whistle. Now I’ve realised that asthma is more than just struggling to breathe – it’s about having inflamed or sensitive airways that need to be soothed by preventer inhalers so they don’t react to triggers with symptoms like wheezing and a tight chest or coughing at night.

“I wish my doctor had recommended the Asthma + Lung UK website when they were first diagnosed as knowing there are other parents out there going through similar experiences is really helpful. And understanding more about asthma helps to build my confidence when I’m helping them deal with asthma symptoms."

The asthma diagnosis was a relief

“Once William and Thomas were both diagnosed with asthma, I mostly felt relieved. It’s helpful knowing that my children are being treated with the right medicines for the right condition. Getting the diagnosis has helped me as a parent, as I have tried to find out as much as I can about the condition. I feel more prepared knowing why they feel unwell."

I’ve built confidence about inhaler technique

Sarah Johnson's sons“I used to be scared of what to do as I was worried about giving William too much inhaler or too little, but I went to the GP for advice and have been shown the correct inhaler technique. I am really determined to make sure I’m doing it properly so if William ever gets symptoms, I can gauge how many puffs he needs and be sure he’s getting the right amount of medicine into his lungs. I start with a couple and then monitor it from then on. I am definitely more aware and confident now.

“I also make sure Thomas is taking his inhaler correctly too."

Keeping track of asthma symptoms

“In the last 18 months I have started to use a diary to record William's symptoms, triggers, weather conditions that day, and the number of puffs of the reliever inhaler he’s been given. I’ve also been recording whether he’s had a cold.

"I would recommend this, alongside using a written asthma action plan, for anyone looking after your child and for yourself because it helps you spot any patterns so you can work out what brings the symptoms on."

Encouraging a good routine with inhalers

“Asthma has become part of our normal lives. Both boys use their preventer inhalers as part of their daily routine; it’s almost as normal as brushing their teeth. William's inhaler is kept out in the lounge rather than in a cupboard where we might forget to take it. It’s almost like part of the furniture! We explain to him that preventer “puffy” keeps him feeling well, even when he’s already well - it's part of his daily routine.

“Thomas looks after his own inhaler and is confident about managing his asthma, but I check frequently that he's using it and if he needs a new one ordered. I always ask him if he has his inhaler with him and remind him to use the correct inhaler technique. I know as a teenager it must be difficult taking an inhaler in front of everyone, but it’s important to reassure children that it’s OK to take it and make it as normal as possible.

“Even though Thomas is confident about managing his asthma, it’s important to check in and provide extra reassurance that I’m there to help. I remind him every now and then, asking if he’s got his inhaler with him. Communication is key with older children. You have to strike that balance of letting him be independent with his asthma care, but also reminding him that you’re still there – asking how he feels and checking he’s OK."

Helping family and school understand asthma

“On the one hand, you find people who are nervous about asthma. For instance, my mum was always worried about looking after William as she was worried he might have an asthma attack and she wouldn’t know what to do. But now she’s watched and learned from me, including how I give him his inhaler and what his triggers and symptoms are, she’s more confident.

“On the other hand, lots of people are blasé about asthma and often it’s not seen as serious, even though it actually is.

“When Thomas started school I took in an asthma action plan so they knew as much information as possible about his triggers and what to do when he didn’t feel right. I was keen to stress that teachers shouldn’t let him get to the stage where he’s struggling for breath, and that they should always call me straight away if there’s any concern.

“With William I have spoken in detail to his teacher at nursery and also his playgroup leader. I tell them if he had to have his blue inhaler that morning /previous night or if he's feeling unwell. If there has been a change in weather I warn them he could feel unwell. I basically talk as much as I can to his teacher and keep them informed.

“With both nursery and school, I have made carers and teachers aware to call me as often as they need to. I'm more than happy to come straight away if they feel unwell." 

It helps to talk to other asthma parents

“Support groups for parents and wider family are a lifeline. I have found a lot of information on the internet. I also found it really useful talking to people who had asthma – particularly those who were diagnosed as children and have grown up with it. It’s good to know what helps them and just talk to other people about what you’re going through. I would say to any parent: don’t panic. It can feel very frightening being a parent of a child with asthma, but you do get to realise what your child’s triggers and symptoms are. With time comes confidence and knowledge."

Finding time for me

"As a busy mum of three, I don't really get a lot of time for myself but I do have a very close family who will help me if I need a bit of help when I feel unwell which thankfully is not very often. I have recently run the London Marathon for Asthma + Lung UK and spent a year training. I so enjoyed having a bit of me time, and the money I raised made me feel like I did a little bit to help. I had such a feeling of achievement afterwards!

“If I do have a few minutes to spare, I enjoy reading and cross stitching. And I do catch up for a cuppa when I can with my friends."

Sticking together as a family

“Asthma has had an impact on our family life. We've had lots of hospital visits with our youngest son, William, though thankfully not so many with Thomas. The older boys have had to cope with me being away from them when William has had to go into hospital. I even had to miss a sports day, which made me feel really sad. They do understand how important it is for me to be with him, though.

“We've also had to adapt days out if our youngest has been unwell with his asthma. Either we’ll split up – so just me or my husband take the older boys out while the other one of us stays at home with William. Or, we’ll change the venue or timings of a day out. We don’t make a big deal of it. We make sure the older boys still get time with us as often as possible."

Parents talk to Asthma + Lung UK – Sarah Johnson

Sarah Johnson shares how she’s helping her sons Thomas, 13, and William, 3, stay well with their asthma.

Video: Parents talk to Asthma + Lung UK – Sarah Johnson

Sarah Johnson shares how she’s helping her sons Thomas, 13, and William, 3, stay well with their asthma.
Transcript for ‘Parents talk to Asthma + Lung UK – Sarah Johnson’

0:03 We’ve learnt from William that he has quite a lot of triggers and they can be quite varied.

0:08 They can be changes in weather. They can be him not feeling very well with a cold or a cough.

0:14 He had chicken pox last year and although it didn’t trigger his symptoms hugely,

0:19 we did notice a difference in his asthma slightly.

0:23 We’ve yet to discover whether pets make a difference to him,

0:29 but the wind can change his asthma. The rain may make him feel poorly.

0:36 The cold weather can make him poorly as can a sudden change to really

0:40 hot weather make him feel poorly,

0:42 that we’ve noticed. And with the older son it’s mostly when he does his exercise and when he gets a

0:48 particularly nasty cold or a virus.

0:55 With my younger son as well, we’ve started writing a diary,

0:59 so that we can see, we can compare now, I started it last year,

1:04 so, we’re getting to a point where we can now compare what he was like last year

1:08 to see what he’s like this year.

1:10 This is what he was like last year, he may be like this again this year, or

1:15 yes, this is what he was like last year, this is why he’s not feeling very well.

1:19 There’s something triggering him – just to build up a picture.

1:27 I have a lot of interaction with his teachers because I take him in daily.

1:32 I tell them whether he’s had a poorly night,

1:36 whether he’s not felt well,

1:38 whether, if there’s a change in weather,

1:40 I mention to them that he could feel slightly unwell today.

1:44 I tell them if he’s had his reliever inhaler.

1:47 I probably speak to the nursery teacher for my younger son every day

1:51 about whether he’s feeling fine or whether he’s not feeling fine

1:54 and again, they’ve got an action plan for him.

1:58 Both schools are aware that I’m literally on the other end of the phone. They can call me

2:02 anytime and I will easily come up to the school.

2:10 Because I know, my younger son especially,

2:12 September can be the start of a few months where he’s not feeling 100 per cent,

2:17 I make sure that before he’s going into his new classroom,

2:21 I make sure we’ve got an action plan ready for him.

2:24 I make sure I talk to his teachers in great detail about his symptoms,

2:29 about how he may possibly, over the next few months, feel.

2:32 What to do, make sure they’re got new medicines, that they’re all up to date.

2:38 And I would probably make sure that that’s all done,

2:41 ready for him going into his new classroom.

2:44 Once he’s in his new class, for the first few weeks certainly, or

2:49 however long it takes, I keep in touch with the teachers,

2:51 I speak to them regularly.

2:54 Again, I would make sure they’re confident using the medicines, if they need to.

2:59 I would make sure at home we’ve got the right medicines,

3:02 and spares for ourselves at home and for at school and

3:06 just really keep lines of communication open constantly

3:11 between the school and myself.

Sarah ran the London Marathon in 2016 in aid of Asthma + Lung UK, helping to raise awareness of the condition and raising valuable funds to support our ground-breaking research.