Asthma Parent

Well, it seems that we were wrong about the Atrovent. The consultant was really quite down on it for use in one so young and seemed to think that the potential short term side effects were not worth it. I think perhaps that the reason that we've been disillusioned with the consultant appointments in the past is that he's extremely blunt about the fact that there really isn't anything they can do for viral induced asthma, and that's really not what worried parents want to hear. We can throw preventative drugs at it, or not, and the likely outcome will be the same. He cited a couple of research papers both of which looked at giving prednisolone to children with acute respiratory distress, one paper focused on parents administering it at home and the other in hospital. Half of the children in each study were given a placebo. Imagine that!? You think that you're pumping evil steroids into your child because it's your last resort, you're worried to death and you ...

Happy New Year! I very much hope that Christmas and the New Year finds you well and asthma free. Tomorrow we are back at the respiratory outpatients clinic at the hospital. Not entirely sure what we're hoping for, but perhaps at least some clarity on the issue of when to give Prednisolone and some insight into whether A's daily preventer medication is likely to be doing anything at all given that she only has asthma attacks after colds and no symptoms whatsoever in between. In the past these appointments haven't been entirely helpful, we'll see. We've had a fairly good run since the last cluster of attacks. No colds for just over a month and as such life without asthma for a bit. I know I'm speaking too soon, it always happens that way, but you've got to enjoy the good bits however short they are. Just after Christmas A started on one puff twice a day of Atrovent   to see if it might be useful. I am concerned about throwing another drug randomly at the...

Since A's first asthma attack we have met some truly exceptional healthcare individuals who have helped us more than they probably know, (we've also met some shockers, but perhaps I'll leave those and their 'helpful' comments for another post when I'm feeling a little less charitable). Instead, here are just a handful of the brilliant ones. After A was first discharged from hospital I remember feeling really quite isolated in terms of what we do next and who to turn to both for her medically and to some extent for me mentally. Our local GP practice have been superb, but the turning point came when they made an appointment for me and A to see the specialist asthma nurse. She really has been an incredible support, she introduced me to the Personal Asthma Action Plan , suggested new medications for A and has always found the time to ask about us and how we are coping with the stress and strain of being asthma parents. A likes her too, (at least she did until sh...

...yet we really can't do without you! So for the third time in 4 weeks (we had a whole week off!), A is back on Prednisolone after a very nasty flare up over the past few days. I have to be honest, I'm feeling at my wits end wondering where this is going to end, three attacks in four weeks regardless of being on all of the medication we have to hand and each attack worse than the last. This time she hasn't even responded to the Prednisolone quite so quickly. At the moment I genuinely don't understand the term 'well controlled asthma', we have no family history of asthma, (so we are rookies) but as far as I understand it A is on all the medication that she can have at her age, so what more can we do? We know her triggers, we recognize early when her condition is worsening, and yet nothing we do appears to make a difference. Giving Prednisolone is such a double edged sword. When we see her condition worsening the options are; go in early with it to try to pre...

I just wanted to do a quick post about the amazing work of Ronald McDonald House Charities UK . What they do is provide accommodation to parents of children who are in hospital. Sounds very simple, but when your child is in hospital long term, or spends time on the ICU or HDU units it is unthinkable that you could leave the hospital, go home, sleep or do anything other than just exist at your child's bedside. From a child's point of view it is impossible to understand that at least one of your parents wouldn't stay with you and exceptionally frightening to spend time in hospital alone. We've only used Ronald McDonald House once, for one night. It was well run, efficient, welcoming and an utter relief to know that we were a stones throw from our sleeping daughter in the HDU and we were able to get some rest in a comfortable, safe environment. But the houses provide accommodation for parents as long as they need it, when their child is long term sick and/or they live ...

Today is one of those days where I constantly feel on edge wondering if an asthma attack is looming. There are a number of early warning signs before A has an attack, but they're all things that could be indicative of something far less serious. Today she was a bit out of sorts, looked a bit pale, coughed once or twice and had a couple of meltdowns. All of these could be easily explained by being a bit tired (baby L kept us on the go last night waking a record 5 times), looking pale probably because we didn't do a great job of washing the white and black face paints off yesterday (she was a cow, she likes cows, she wasn't 'being' a cow, just to be clear!), and coughing because she's perhaps just... clearing her throat. But it sometimes feels impossible not to panic about every cough and sneeze, run to the cupboard to check the medication stash and hesitate to take her out in the cold just in case that triggers another attack. Overall I think we're quit...

Giving inhalers throughout the night (often 3-4 hourly when things are bad) is exhausting and often a bit upsetting if you inadvertently wake the child. But it can also be both daft and hilarious. You have to be stealth. The idea is to administer a ridiculous amount of puffs through the spacer without waking the child. In hospital the nurses do this with the skill and silence of a ninja, at home we do it with the fumble and blunder of a red-bummed baboon. For example, A is sleeping reasonably peacefully. We enter and make our approach. She stirs, her Dad dives down at the foot of the bed, I jump into the doorway, but as I do A rolls right out of bed. I do that leap that you see in the films (minus the barrel roll, though I like to think it did happen) and somehow she rolls into my arms before hitting the floor. I roll her back into bed. Inhaler still not administered, parents tired, wide eyed and wondering how on Earth to give an inhaler to a child who has just been rolled on...