Parenting a child with asthma

Our daughter was a little over one year old when we noticed something was amiss with her chest and lungs.

Chest infection

It started with a small chest infection. She had just started crèche so we were expecting the onslaught of viruses and bugs. It didn’t seem to be shifting I booked her in with the GP, it was a Friday so I didn’t want to run the risk of it worsening over the weekend. On Saturday morning I met a friend and her little girl for breakfast and a catch up. Olivia seemed in good form, full of chatter.

Then within the space of 20 minutes she had gone pale and was shivering and shaking uncontrollably. Her wee lips were turning blue as if she was freezing but her temperature had spiked to 40oC. I rang my husband and he picked us up straight away and we headed into Crumlin. Despite serious overcrowding we were admitted right away and that put the fear of God in me as at that point you know if after triage you are not turfed back into the waiting room then something is very wrong.

It turned out she had pneumonia, a chest x-ray also showed it had done a fair bit of damage in her lungs. Everyone was baffled as to how she contracted it and how quickly it escalated.

It would be months before we got an explanation.

The aftermath

She was plagued with a constant cough afterwards. And I don’t just mean a little cold and a sniffle I mean she sounded like she smoked 90 fags a day and was constantly practising for a seal impersonation competition. We had countless late night runs to the doctors and were persistently placated with terms like ‘viral infection’ ‘just a touch of croup’ ‘try giving her calpol’ and so on. On top of the constant coughing she was forever coming down with chest infections. We rarely got to see the same doctor so every time we were explaining her situation we were made feel like we were overreacting because (as often happens in cases of croup for example) the cool air would ease her symptoms.

It wasn’t until we moved house and settled in with a new GP that we finally started getting somewhere. It was on our third visit to him that he asked had she been checked out for asthma. He explained that it would be unusual to get an asthma diagnosis for a child so young but he strongly suspected that this is what was at play. He offered to refer us to a specialist and he stated all her symptoms and the reasons why he suspected asthma.

Stupid health system

In typical fashion we got an appointment that was over a year away. We couldn’t go through a year of our baby girl coughing so much she was bringing up blood and getting sick. A year of spending nights with her wrapped up in duvets in bed beside us with the window wide open. A year of telling her to stop running around with her friends because it would bring on a coughing fit. A year of trying to stop her crying the minute she started because once she got upset it would lead to coughing. Or trying not to tickle her too much because those infectious fits of giggles would turn into fits of coughing and struggling to catch her breath. So we opted to go private and were seen within a matter of weeks. The unfairness of the two tiered health system. We were fortunate but I know that isn’t the case for everyone, but that is a rant for another day.

Our consultant in Temple Street was amazing. After examining her he was able to tell us she had multi-trigger cough variant asthma. In plain non med speak this means that anything that triggered a sharp inhale such as running, crying, laughing, a cold, would cause her to cough as she didn’t have the capacity to take those deep breaths. He also suggested she have a procedure called a bronchoscopy. He felt there was evidence of an underlying issue as to why she caught pneumonia, why every cold she got ended up in a chest infection and why she was plagued with constant respiratory infections — all of which triggered severe asthma attacks. We agreed as although the idea of having out baby girl put under anaesthetic was scary, we were desperate to get to bottom of her symptoms and figure out the best way to help her.

The spacer definitely helps when giving children their inhaler

Trial and error

While waiting for the procedure she was put on a number of inhalers and other meds. We knew it would be trial and error in finding out what would work best for her so what followed next was a tough few months. The first inhalers were no good and she got zero relief during her asthma attacks which were happening as often as ever. The next option was a combination of the inhalers and Singular — which was a powder to be made into a drink. The asthma attacks became less frequent but were replaced by nightly night terrors which meant she would wake screaming 4 or 5 times a night. So that wasn’t an option. While Singular can be very effective in treating asthma, for a small minority it causes a side effect of vivid nightmares. So back to the drawing board. We stuck with just the inhalers until her procedure.

Superhero

To say she was a wee trooper is an understatement. I was a mess, I couldn’t face seeing her being put to sleep so her daddy went into theatre with her. I needn’t have worried, it was all done and dusted in an hour and she was back in my arms, cranky and asking for toast. My little superhero. Afterwards the consultant explained to us that Olivia had a bronchomalacia (I had to google that again just to double check the spelling). Basically, the airway going into her left lung is structurally weak and is ‘floppy’ when she tries to take a deep breath causing the cough which is her body’s way of trying to get more air in. It also stops proper excretions (how gross is that word) meaning when she gets a minor cold the secretions become trapped in her lungs and lead to an infection. Ah ok so that explained the pneumonia incident and the persistent chest infections too. It also explained her cough variant asthma.

The good news we were told, is that she will likely grow out of it by the time she is eight, as her airways grow and get stronger. The bad news is that until then there is fuck all we can do except ride it out. Ride out another six (or more years) of that chronic cough, prolongation of lower respiratory tract infections, exercise intolerance, respiratory distress, recurrent pneumonia and recurrent bronchitis. Yep, just some of the symptoms we were told. As well as the aforementioned asthma attacks.

Prevention is better than cure

In asking how come this wasn’t picked up until she was one I was told that in all likelihood the fact that I breastfed her until then meant she wasn’t picking up viruses as much. Plus she hadn’t started crèche and we all know that with the kids practically licking each other every day it is inevitable that viruses get passed around.

With that in mind our consultant developed an asthma plan specifically for Olivia and her specific condition. She gets a prevention inhaler twice a day and this allows her to run around with her friends without sounding like she is hacking up her internal organs. She has a light relief inhaler for those days she might overdo it (but thankfully it is rarely needed) and a relief inhaler for when an attack flairs up.

The action plan from the Asthma Society of Ireland

Winter is coming

These days her asthma isn’t an issue day to day but it does become a problem any time she gets a cold. The famous ‘Winter is coming’ meme gets used a lot in our house hold. We avoid out of hours now as her asthma plan has us follow a number of steps at home and if that doesn’t work it is straight into hospital. We have steroids in the house that she gets if she has a cold and it hasn’t shifted in a few days as that means it is settling in for the long haul.

We have croup-like attacks on a regular basis but (and I am also afraid to type this in case I jinx it) we are getting more of a breather (no pun intended) between each one. It used to be around every six weeks it seemed her wee lungs got worn down and a virus was able to take hold but the last two had two and a half months between them which for her was great. And now we are coming into the summer months she hopefully will get a bit of a break.

If your child has asthma

For parents who are maybe just processing the news that their child has asthma it might not seem like it but the diagnosis is a good thing. It means you now know what you are dealing with. Eighteen months ago Olivia couldn’t run the length of herself without coughing and struggling to breath and now she happily runs, chases and plays with her friends completely unaffected. Yes we have rough days when she gets a cold or virus but we can handle that now that we can see her having a good quality of life. And we always have the end goal in sight, in hoping that she will grow out of this.

There are some things which we have tried and tested in our journey (every old wives tale you can imagine) and for us there are a few standard things that work. Olivia’s bed is titled slighted and she has a pillow tucked under her sheet to keep her sleeping at an angle as when she lies on her back the pressure on her airways causes coughing. We have a saline plus machine in her room (not at all sponsored by the way) and without a doubt that definitely has helped as she has been able to clear colds and respiratory viruses faster than normal. When her asthma flairs up we use a cool mist humidifier to moisten the air in her room. We never use the vicks or calpol plug-ins when she has a cold as they dry out the air. When it is really bad we take turns sleeping with her in the spare room, we tilt her up wrap her up in layers and open the window. On those occasions we keep her at home for a few days and spend them watching movies and chilling out to give her wee system a chance to repair.

Thankfully she has always been willing to take her inhalers. That could be down to the fact that at the very beginning we tried to make the inhaler fun. Her first spacer we let her decorate it with stickers and practice giving it to her teddies. We have a routine so she knows the steps so even when at a sleepover at her grandparents she will use the inhaler — it’s toilet, wash hands, inhaler, wash teeth. Now she is a bit older we let her push the inhaler down herself and we make a big deal of how important a job that is. There are days when she can’t be arsed going along with it all so bribery of sorts has to come into play, but sure what would parenting be without a little negotiating with your tiny terrorist?

Karen

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