“Max has had asthma symptoms since he was a baby, so people used to be anxious about me leaving him with them. But his written asthma action plan is really useful for reassuring them. All the information about triggers and medicines is in my head, but now I can share it with his Scout leaders, football coach, friends’ parents and so on.
"It means that everyone has the same set of instructions, and that they’re less likely to stop Max doing the things he enjoys. He already knows what to do, but the action plan means that other people do too, even when he can’t get the words out because he’s having symptoms.”
Max is getting into good habits
“If Max is having symptoms, I make sure he’s as calm and happy as possible while we wait for the reliever inhaler to kick in. I talk about nicer things, like his friends and sport, and reassure him that it’s going to be OK. At first I worried about the side effects of Max’s medicines – a combination of several inhalers and tablets - but I’ve talked my concerns through with his consultant, who I really trust. Now I just remind myself that if he doesn’t take them, the risks of having an asthma attack are just too high.
“I watch Max taking his inhaler to make sure he’s using the right technique. It would be so easy to get it wrong, or forget to shake the inhaler, especially when he’s rushing, but I want him to get into good habits now so he can take better care of himself when he’s older.”
We avoid asthma triggers where we can
“Max has a few allergies which can trigger his asthma, including mould, grass and tree pollen, animals, and dust mites. We’ve learned not to stay in rental properties when we go on holiday, as the mould and damp from rooms which have been shut up over winter have caused him to be hospitalised twice.
“He takes antihistamines during the hay fever season and if he’s going to a friend’s house where there’s a dog or cat. I dry his bedsheets inside to help prevent pollen getting inside the house. Although you can’t get rid of dust mites completely, we find it helps to replace his pillows every couple of months to reduce the build-up."
Keeping Max well during the school holidays
“My husband and I work full time, so it can get hectic during the school holidays with three kids off school. But having a really good routine in place helps Max to remember to keep taking his medicines every day. His preventer inhaler stays in the kitchen where we can always see it, and we have a medicine chart that Max ticks to show he has taken his inhaler morning and night. This is on the wall by the front door so we can check it before he leaves the house or goes to bed.
“If we’re going away during the school holidays, I always book an appointment with Max’s GP beforehand to check his action plan and to get any prescriptions we need to take with us. I like to make sure we have enough medicines to cover the entire holiday. I also make note of emergency numbers in the place we’re visiting, and where the local A&E and GP practice is. Being prepared makes my husband and I feel much more confident taking Max away, and reassured that we can keep him safe.”
I’ve learned to manage my energy levels
“Hearing Max coughing at night can be difficult, but I’ve always told him not to worry about waking someone up if he needs to. His reliever inhaler is always right by his bed and if he has a cold, decongestants help him feel better.
“When I’m lying awake I sometimes get thoughts racing around my head and stopping me from sleeping. I’ve found that writing them down can help – even if there’s nothing you can do about the problem at that very minute, writing it down feels like taking action and helps me feel calmer. I also use some relaxation techniques to help me get back to sleep: tensing and relaxing various muscles, and listening to calming music.
“If I haven’t slept well, I make sure to manage my energy levels during the day – planning in some downtime after work, or prioritising only the really important things (and ignoringthe housework for a day) to make sure I have the energy to get up in the night if I have to."
Support from family and friends has helped so much
“I’m lucky to have good people around me to talk to. Even if they don’t understand everything, it’s good to get it off my chest. Friends have offered to give my other children (George, 16, and Harry, 14) their tea so I can sleep or have time for myself. My husband Neville doesn’t tend to get up in the night but that means he can take over when he gets home from work and take the pressure off me.
“Work has been really supportive too – I’ve been completely honest with them about his medical history so they all know why I’m tired sometimes, and why I might need to change the days I work when Max is ill, or to take him to medical appointments.
“Having a good relationship with our GP and staff at the hospital has made all the difference – I really trust them and it would have been a lot harder without that support.”
We’ve tried to share our knowledge with the school community
“Max had some problems at school with other children (and even teachers) not understanding how serious asthma can be. So we’ve been working with his Community Respiratory Nurse to help the whole school understand more about asthma. She gave a couple of talks in assembly using models of the airways in the lungs, and showed them a peak flow reading looks like.
“During the assembly, Max read out a poem he had written about what it’s like to have asthma. It’s since been used to explain asthma to other children, and on Asthma UK’s Facebook page. Telling his own story has helped his friends and teachers understand Max better and has been very good for his confidence – now he’s more likely to tell his teachers, ‘No, I can play football today’. And I’m more confident in turn that his teachers and friends know what to do in an emergency, so everyone’s happier.”
Video: Parents talk to Asthma UK – FionaFiona explains how she’s helping her son Max, 10, manage his asthma well.
Transcript for ‘Parents talk to Asthma UK – Fiona’
0:04 Over the years, we’ve realised that Max has several triggers for his asthma symptoms.
0:09 They might have changed, or we might have actually become more aware as the years have gone on.
0:13 So, he has quite a lot of allergies that we’ve found out over the years,
0:19 from different types of mould, from different pollens, trees, grass, dust mites,
0:26 and as well as things like the weather can make a huge difference to his asthma symptoms,
0:30 so, on a foggy day he might really struggle. When it’s wet, he struggles more.
0:40 Max has an asthma action plan that has been, sort of, done with myself,
0:46 Max, my husband, and the consultant and the respiratory nurses.
0:51 And at first, I probably didn’t share it as much as I should have done.
0:55 I sort of didn’t really think about that.
0:57 As he’s got older and he’s spending less time with me and doing things more independently,
1:02 I’ve realised how important it is to share his asthma plan.
1:08 I have had concerns about the amount of medication that Max is on.
1:13 He’s only ten, and has been on a combination of tablets and inhalers,
1:18 both preventatives and relievers for several years, but I talk with the consultant and the asthma nurses.
1:26 I sometimes have been concerned about, maybe, the side effects of steroids.
1:30 The risk of him not taking his medication is too great.
1:33 It might increase his asthma symptoms, so for him,
1:37 it’s very important to maintain a healthy lifestyle as much as possible,
1:41 to be able to do the things that he wants to do,
1:44 without his asthma symptoms stopping it.
1:46 And, without the medication, I think that would increase the risk.
1:53 I think one of the hardest things with Max and his symptoms for asthma has been how it affects him at night.
2:01 Over the last ten years, he’s had lots of disturbed sleep, which has affected particularly me,
2:09 because I tend to sit up with him or stay awake listening out to see whether he is experiencing any symptoms.
2:17 I think one of the important things is to make sure that he takes his medication regularly
2:23 and that, hopefully, prevents those symptoms at night getting worse.
2:30 The support of very good friends and family has been so useful,
2:35 even if people don’t fully understand what you’re going through,
2:38 sometimes just being able to talk to someone
2:40 who can remain a bit objective, who’s not being affected.
2:44 Just getting it off your chest can be really helpful.
2:46 So, I’ve had, I do have some very good friends that will listen,
2:51 will understand if I’m saying that I’m feeling exhausted,
2:54 if I’m feeling a little bit emotional, they let me get emotional.
2:59 And they’re there for me. Plus, they’ve offered practical help.
3:06 Max has had a slightly difficult year at school.
3:10 I think he has struggled with the fact that maybe some of the friends in his class,
3:15 and some of the teachers maybe struggle to understand how it has affected him
3:20 and how it does affect him on a daily basis.
3:22 The community respiratory nurse has come into school and has spent some time with me and with his teachers,
3:28 talking through Max and how asthma affects him in particular,
3:33 talking through his asthma action plan with them
3:36 so that they can ask questions and see whether they now feel more confident with it.
3:41 She also came in and she did assembly with the entire school.
3:46 And that’s been a really, positive experience for Max because,
3:48 even though it wasn’t focused particularly on him,
3:51 he felt more confident in the knowledge that maybe children
3:55 and the teachers had a better understanding of what it’s like for him.