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Hi, Alfie saw his consultant last fri and a new drug has been added in; azithromycin - he has this 3 days a week. Apparently this is used with children with cf and she hopes that this will mean that eventually we can reduce his dependance on steroids. He's now showing signs that his adrenal gland is not functioning properly and has developed a 'suspicious' heart murmur. He is having a scan under anaesthetic to check if its ok or if its actually drug related problems. He's still wheezy and looks like paper. We have been told that if he deteoriates more that we are to take him to the ward and not A&E. Does anyone now this antibiotic - does it have behavioural side effects - he's already mad on his pred.Hope all kids are ok.Margot

3 Replies

hi. michael is on azithromycin 3 days a week, he started it a week ago. it is used for its anti inflamitory properties in asthma and has been shown to increse lung function in asthmatics.

he also goes straight to the ward if he becomes unwell so that we can skip the gp and a&e. ihope this new antibiotic works for alfie, keep me updated, and ill do the same with michael, looks like were starting this journey together!

if hes on theophyllin, he will need his levels minitored to make sure they dont go too high cos they can interact with each other.

hope it all goes well



When I got azithromycin from the hospital they only gave me enough for a week because of the expiry date. I went to my gp to get another prescription and they refused saying that they don't think they should issue this drug to a child Alfie's age who doesn't have confirmed cf. I had to go back to the asthma nurse at the hospital - now the hospital are giving me 3 weeks supply of the drug for me to make up and she's going to talk to the gp. Aaaaaargh! Why does everything have to be so complicated.

Margot x.


luckily i didnt have that problem cos the cons faxed a letter through to the gp. i got 6 weeks to make up myself which is a bit of a hassle but if it works itl be worth it


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