Geoff and Lavinia have two daughters with asthma. Geoff has also had asthma since childhood. They have encouraged their children to manage their asthma and enjoy an active, healthy lifestyle.
How many children do you have, and what sort of asthma do they have?
Lavinia: We have two girls. April is nearly 16 and has seasonal asthma. From September to January, she has consistent asthma we need to treat and, sometimes (usually around November), we have to rush to the hospital where she has a dose of oral steroids – although we have managed to omit that this year, which has been nice.
Gemma is 12. She doesn't have seasonal asthma, although it can be bad during that season too. It just seems to be a general everyday asthma, depending on what has triggered her that day. Geoff, too, has asthma and his is more the general all-round thing too.
Tell me how you realised the girls had asthma.
Lavinia: It took a few years with April. She was about four. Because she was seasonal, I used to get to that part of the year and think, 'Oh, she's really not well'. She would be coughing and carrying on, and then I would forget about it when it went and she would have no signs at all during the rest of the year. Even if she gets a cold or a flu, it is very rare that her asthma will become unsettled.
With Gem, you could just tell right from the word go. At six months, she had bronchiolitis and she took a lot to get over that. And then, it was always something; in fact, I think she probably coughed consistently for the first two years of her life, because we weren't really aware of exactly what was triggering her. It took two years for me to find someone to say the word 'asthma'; then it took two years to find a doctor who knew what he was doing.
What sort of emotions did you go through at that time?
Lavinia: Well, I had no knowledge at all. I had been through a few asthma attacks with Geoff but, because he was an adult, I never felt responsible for his condition. But with Gemma and April, they are my children; you feel so responsible for their lives. I knew nothing. I felt useless because there was nothing I could do and nothing that I knew, so it made me get out and find a bit of knowledge.
What were the major issues for you when the girls were diagnosed with asthma?
Lavinia: I felt a lack of support. I had some great friends, but I felt that they were all a little nervous being around me because Gemma was very unpredictable. And, at her particular time of year, April was more unwell than Gemma could ever be. I felt my friends were a bit nervous, so I did feel quite isolated. Geoff's mum was a wonderful support, but again she had very old-fashioned ideas and I think she got a little bit frightened by it all, remembering what Geoff had gone through.
I didn't like that feeling of lack of knowledge or the feeling of lack of control. I felt like I had to get all these little safety nets set up everywhere and I did that. Once they were old enough to go to kindergarten or school, I basically educated everybody there. Any medication or form that would come home would just be filled out five times over with attachments, but I felt like I needed to create those safety nets.
In the early stages, I didn't realise how serious asthma could be until I started delving into a few books and talking to people, and then I started to get a few statistics and I found that quite frightening. I think that's when the safety net thing came in for me.
What impact has asthma in the family had on your lifestyle?
Lavinia: For me, it means constantly planning ahead. Where are we going and what will be there? Will we be able to cope with a situation if a situation arises? If we are camping, making sure we have power, for instance. Earlier on, we only used the pump, but these days it is different; we use a spacer and that's so portable, you don't need electricity. That has really freed us up.
Or, if Gemma was going to a birthday party, what would be there that she might eat that may bother her? Did they have cats? I had to prepare the people that she was going to visit for the possibilities of what may arise. So your mind is constantly ticking over and trying to be totally prepared for any situation. Then, when you come across a situation that you weren't prepared for, you really beat yourself up over that; you really think that you should have seen that coming. It is my responsibility; it is really my job to make sure that she is safe at all times.
Is there anything that Gemma hasn't been able to do because of her asthma?
Geoff: No, not really. She has put her mind to what she wants to do and she hasn't let the asthma slow her down in any way. I think maybe we might have slowed her down a bit with some of the sports, but as far as Gemma is concerned, no, and I don't blame her. As long as the asthma is managed properly and she knows her limits.
What role has exercise played in Gemma's daily routine?
Geoff: Well, she is always doing something. She swims, she dances, she likes running, so she is always doing some form of exercise. I don't think it really affects her. If she knows she is going to do something really hard, like a long run or a quick run, she will take a preventative before she does it.
Lavinia: Sometimes, if she has been swimming in the squad swimming team and she has been unwell, she will have to miss out occasionally, because it is just not sensible to swim in that condition. But, in general, yes; it certainly makes her much more determined to achieve and much more likely to want to be the best.
I guess in a little way we have encouraged that, because that sort of strength will help her get through her adulthood, given the fact that she does have something running against her out there.
What sort of support have you had from the schools Gemma has gone to?
Geoff: Initially, the teachers didn't know what asthma was. Once they were taught and they had a bit of literature about what it really is, it seemed to be better. Earlier on, when she was younger, it was a lot harder.
Lavinia: The teachers were quite nervous about her being there. Even though she had many days when she wasn't seriously unwell, she still had the ability to have that snap attack and I think that frightened them a little.
Within the school situation, initially we really didn't get any support, but it was probably our determination to make sure that we did, that Gemma and April got what was best for them at the time. I actually set up the whole asthma policy within that school. It was very early days and they were really just being set up in schools at that stage.*
Has Gemma had much time off school?
Lavinia: This year she has had a pretty reasonable year, only 13.5 days off. But there were times early in her schooling when she was away for a third of the year. But she is very bright, and very determined, so she really hasn't fallen behind in anything at all.
Have there been times when Gemma did not want to take the medication?
Geoff: Sometimes she gets bored with it; she has had enough of it, so we need to remind her why she is taking it. She normally gets back into the routine again. She understands. She knows she has to take it.
Are the teenage years a difficult time regarding compliance with taking medication and wanting to be like their friends?
Geoff: Yes, definitely. She always wants to be with her friends and I think, once they get together, she tends to forget because they are having fun.
Lavinia: The other thing with Gemma – because she has had asthma all her life, she is so used to those first symptoms (which should really be treated), she tends to ignore them. So, by the time Gemma decides she needs something, she needs twice the amount as what she would have needed if she had noticed those first symptoms. That has to be usual for a lot of children, that they would ignore those first symptoms because they just think that is the way it is.
Are you at a stage where you are comfortable for her to manage her own medication?
Lavinia: It is easy for her to forget that she needs to take it each night. We have a little basket in the pantry with all of the asthma stuff in it. When I know she hasn't taken it and I am finding it really hard not to say, 'Have you taken your medicine, Gem?', I just put it on the bench and I hope she notices it. Then, when it is all tipped out of the basket and not put back in, I know she has actually done something with it.
Do you feel you have to let her make mistakes sometimes?
Lavinia: Yes, but for Gemma those mistakes can be life threatening. So, at the same time, you have to realise you are still the parent and ultimately responsible. If she forgets to take it, it usually means a dose of oral steroids, which – with the side effects – you would prefer to avoid.
How do you see the future for both of your girls?
Geoff: I think the future will be fine. They understand how to treat it. They both know it is not going to stop them doing anything they want to do. Gemma will try extra hard to prove that it is not going to affect her. I think the future is going to be fine. The medication is always getting better and better.
What would be your advice to parents of children newly diagnosed with asthma?
Lavinia: One would be to build a really good relationship with your local doctor, because ultimately they are the one who you can get to in a hurry. Secondly, the minute you hear a cough, treat it; don't wait for it to go away – they never go away. So, when you are lying there at night and you hear it, you may as well get up and do it then, because at 3 o'clock in the morning, it is still going to be happening and you won't have slept for two hours by that stage.
Also, find some good support. You need that. There is more support out there now. Support groups, local health services, friends and family are perhaps more knowledgeable now about asthma than they were before. I would have loved some support in those early days and not felt so alone.
* Asthma Victoria offers advice on asthma in schools and the duty of care of school staff. Call 1800 645 130 (Australia) for further information.
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