My 13 yr old son was misdiagnosed with asthma when he was 1 and since then been prescribed so many different inhalers and asthma treatment when eventually his consultant diagnosed PBB and reflux. Since a flare up of what i refer to as that awful wet cough he has been on and off coamoxiclav since June and then put on azithromycin for the winter. However his cough is back for a week now and its not responding to the usual coamoxiclav. He is better in himself but cough is horrendous. Physio with aerochamber helps a little. Turbutaline seems to make it worse. How do i know whats happening because his sputum test was negative although did have a fair bit of saliva in it. Am worried bronchiectasis is setting in. Back to hospital this week. Desperate for Any advice
Child persistent bacterial bronchitis... - Lung Conditions C...
Child persistent bacterial bronchitis not responding to antibiotics
Hi there Mgumsley,
I am so sorry that you are having such a worrying time. Unfortunately children are misdiagnosed so much. I'm afraid that I don't know what PBB is. Does your child's consultant specialise in bronchiectasis? I do think that your son needs to be re assessed. The antibiotics which he has been given act against different bacteria. Do they know what is in there? Sputum tests often come back clear because the lab tests are not sensitive enough to find what is in there. Don't be afraid that your son may have bronchiectasis. I have had it since I was diagnosed in 1953 at the age of three. I have had a normal life and education, travelled the world, had children. At least if you had a proper diagnosis it would help with the ongoing treatment and management of the condition and you should not feel so alone. I think that there is a forum for parents of children with lung problems and that this could be helpful to you. Maybe Mrs Mummy would know.
Thank u for your kind words they are very reassuring. It's persistent bacterial bronchitis. Yes the professor is a wonderful consultant and specialises in children's respiratory. We are due back but it seems like forever and he's off school again.
You could try ringing his secretary and asking for the appointment to be moved forward.
yes ive done this and am waiting for them to get back to me hoping they will see him tomorrow. The GP seem baffled and dont know how to deal with it, they end up giving me prescriptions and telling me to decide whether to give him the medication. They always say his chest sounds clear but yet he is unwell and the cough is horrendous, like a 40 a day smokers cough! Thanks for replying
that diagnosis sounds like what happens with bronchiectasis, just a catch all description for the repeated infections. The name wasn't around when I was small but it presented the same. Too many think that bronch is confined to the old but it is being properly diagnosed in children more and more. The sooner the right treatment and management starts the sooner he will be able to lead a normal life. I do hope that you get it sorted out.x
the consultant explained that he has bronchitis and if left untreated or not treated correctly will lead to bronchiectasis but that they are two different conditions. He needs prompt action but nevertheless the bronchitis is debilitating enough and of course it is my worry that it will lead to bronch which i want to avoid if at all possible. He was really healthy for 2 full years since the last episode inc CT scan and bronchoscopy etc. He played loads of sport, he never gets wheezy or short of breath and never coughs at night, its just the terrible fruity cough and fatigue. There is very little information out there on PBB and if you google it, it is all quite dated. All it needs is the right antibiotic but for longer, at least 2 to 4 weeks, its called persistent for a reason as he still has it since June! Its so nice to speak to people who understand as I've looked around on the kids forums and can't seem to find anyone with children with it!
I suspect that it is persistent because it hasn't been treated with the right antibiotic for long enough. I would be asking very serious questions by now. Does your son produce sputum? If so, does he have a routine for removing it from his lungs everyday? Keep phoning your consultant until you get to see them. The GP is obviously at a loss and needs advice.
I have rang hospital again today and am trying to get him seen tmrw. I am now like a dog with a bone and am taking your much appreciated advice. Yes he does physio with aerochamber everyday but isn't getting anything up now although managed to get a bit last week which came back negative. Will keep trying this and get it to GP. His last xray and CT scan were 4 years ago now and so things may have changed even with the close monitoring of the consultant. He's had co-amoxiclav which usually always clears it eventually but this time it's been 2, 3, 4 weeks and then 4 weeks azithromcin and now he's back on coamoxiclav again! His iron was low so he had ferrous sulphate which helped his fatigue. Thank you for listening.
you certainly seem to be doing all of the right things. I have been doing some reading. PBB seems to be another term for chronic bronchitis. Medics prefer to describe the condition in children as PBB. This is because of its association with smoking. It usually means that they do not know what is causing the frequent loose cough and infections. In adults, chronic bronchitis and emphysema are put together under the umbrella of COPD. They are not childhood illnesses though and are usually smoking or occupationally related.
However, whilst calling the condition PBB, bronchiectasis can be missed. It has many reasons for coming about, pneumonia, frequent infections, whooping cough, something inhaled into the lungs.
Please do not be afraid that it may turn out to be bronchiectasis. This is, in general, easier to live with than chronic bronchitis. But it does need proper management, which is actually, constant infection management!
As it has been a while since your son had a ct scan it may be a good idea to get it done again. He should not need a bronchoscopy.
Co amoxyclav is effective against the haemophyllus group of bacteria only and although, azithromycin has proved useful against a bug called pseudomonas which can colonise damaged lungs, this is usually given long term.
I am not sure if your son cannot cough up any sputum because there is very little there or because it is all stuck down there.
I do hope that helps a little and that you get some answers from the docs soon
am now googling pseudomonas! thank you once more
I am sorry your son is so poorly. I suggest you call the BLF Helpline (03000 030 555). Their expert nurses will be able to give you good advice.
Thank you so much
Hi Mfgworriedmum I have been told coamoxaclav is no longer working as an antibiotic. I have been prescribed Doxycyclin which worked for me. you could ask your Gp if he would prescribe it for your son although I don't know if there is an age limit. I do know you need to protect your skin from sunlight. good luck
Crikey! Weĺl something isn't right so this makes sense thank you for that.
Hello, I know this was posted a year ago but my son is 2 and has been diagnosed with PBB & I haven’t found anyone else with it! How is your son now?
Oh sorry
Only just seen this. Well bless you, I know what it’s like to feel like No one else has this! My son is almost 15 now and had his last flare up as soon as he went back to school September but he has a fantastic consultant and with one week on azithromycin he was on the mend agin. Your son is only 2 so you have done so well to get him diagnosed so young as my boy was almost 10 and I thought I’d go out of my mind with worry. No one would listen to me they all kept saying it was asthma, his growth is very slow because he had so many inhalers steroids and antibiotics. How has your boy been as a baby with it? I hope you have a good consultant but it sounds like you do
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