“It’s good to feel more supported now we’ve got the right people to help with James’ suspected asthma”

Kelly, first took James, 5, to the GP with asthma symptoms when he was 6 months old

“I felt a bit fobbed off at first. We were told James had a virus when he was about 7 months old, then that he had bronchiolitis, then that he was a ‘happy wheezer’. He was off his food, coughing, wheezing, and crying non-stop. So, I kept going back to the GP, and making a nuisance of myself!

“We hoped it would just go away. But when James’ symptoms got worse it was terrifying – sleepless nights worrying and listening to him coughing. My husband understands it better than me and so is more level headed about it. His mum and both his brothers have asthma. So, he and I didn’t always agree what was best – you can go into a blind panic, especially if it’s the middle of the night. We reacted to it differently – he tidied up and I was the one wailing!

“We felt a bit isolated until James went under the care of the children's hospital when he was 10 months old. He was really poorly and in hospital for two weeks, but it was a relief to feel he was with the right people to help him.

Kelly and JamesSupporting each other

“Seeing your child in hospital is a horrible experience, tubes everywhere, you feel tired, scared and helpless but you have to push through. All you can do is support each other. There’s James’s little brother to think of too– sometimes we’ve had to take him along with us to A&E, or else ask my in-laws to drive over and get him. One thing I do is crochet to distract myself.

“I keep a chart of James’ symptoms, treatments, and any questions as I think of them. Having all the information together helps us feel like we have some control over what’s happening, especially when James has a lot of hospital admissions. The A&E doctors find it useful too.

“Little things help us now like using our phone alarms to remind us when James needs to take his inhaler, or to check him through the night. We also text each other if James needs more of his inhaler so we both have a time record of his treatment. 

 “When we go on holiday we put directions to the nearest A&E on our phones. And it really helps to have James’ bag of tricks packed and ready. It’s got all his medicines in, his EpiPen, his latest hospital letters and appointments. It goes everywhere with us.

“James’ consultant told us it’s normal for children to be a bit clingy, or angry, after they’ve been in intensive care and on a ventilator. We found it helpful to get James a bit of counselling to help him deal with the experience.

“James' consultant is very supportive. I’d say to anyone don't be afraid to get in touch with your child’s doctor. They want your child to be well as much as you do.  

Being open about things

“We’ve always been open about James’s suspected asthma which is great because everyone knows to stay away if they’ve got a bad cold. A lot of people think it’s just a question of James ‘bouncing back’. They’re concerned, but they don’t always get it, even good friends and family. But they’re learning. Now James is at school, it's filtering round other mums and dads, who are very kind and concerned. I'm still surprised by how kind and supportive people are. 

Getting an asthma diagnosis

“The doctors have explained why it takes time to diagnose asthma, and that seems better than attaching labels that may be inaccurate.

“For us not having a formal diagnosis hasn't really been an issue. James being poorly has been the issue. What makes things easier is that all James’ consultants and doctors talk about it as if its asthma because of James’s symptoms and what he responds to. His school medical plan mentions his suspected asthma too which makes life easier when he has to be off with clinic appointments and/or admissions.

“I think because the informal diagnosis is there, an actual diagnosis doesn't really change things - it’ll be the final step in the process but it won’t change much for us - the priority will still be keeping him well. “

If you’re worried about a baby or child with asthma symptoms find out more about the signs and symptoms to look out for and what’s involved in getting a diagnosis.