PBB

[MumJones]

Hello, I am searching for further info on persistent bacterial bronchitis, my 2 year old son has been diagnosed with this after catching rsv as a 3 wk old, he’s since spent most of his winters poorly with pneumonia & as he’s only recently been diagnosed I am now looking for things than can help him. I can’t find any info on his diagnosis on internet x

[Hidden]

Hi Mumjones. I was interested in your post because I was diagnosed as having bronchiectasis when I was three years old after several pneumonias and your son’s condition sounds so similar. I had never heard of PBB so looked it up. It said that left untreated it can lead to full bronchiectasis. Was he diagnosed in the UK?

Don’t panic. I am 67 now and have lived a full life. The important thing is that your son gets a correct diagnosis and then the treatment and lifelong management plan that will help him to live a full and normal life. Hopefully then the PBB won’t develop into bronch. I don’t know by whom he was diagnosed but do suggest that you look for a paediatric respiratory specialist who specialises in PBB/ bronchiectasis. It is not right that you have simply been given a diagnosis with no explanation of how to proceed. I’m afraid that GPs are woefully ignorant about these conditions and this is why he needs a really good consultant. I’m afraid that like my Mum you are going to have to be very pro active on your son’s behalf and vociferous in obtaining the proper care for him. Good luck. I am thinking about you.

[MumJones in reply to Hidden]

Thank you for your reply. We live in the very north or Scotland and have for the last year been put under a cystic fibrosis consultant in Aberdeen because no one knows how to deal with him. We have just been released to a more local generalised paediatrician with his PBB diagnosis. I have fought for the last 2 years to get to this stage of them taking me seriously, it took a year until he was 1 & for him to become very poorly for them to realise their was something wrong with his lungs. I have read a lot about brochiostasis & the local consultant has said he hopes he doesn’t have this...I’m grateful to hear you have lived an almost normal life with good care? We don’t know anyone who has this condition & it is quite daunting!!

[Hidden in reply to MumJones]

I do feel for you. They kept telling my mother that she was just being fussy. As I said I had never heard of PBB but it sounds so like bronch. This means that any infections need knocking on the head immediately he begins to show signs, mucus which may be coloured, pain and/or breathlessness, maybe a low grade fever. He will need antibiotics in a high enough dose for long enough. Most doctors do not understand this. I’m afraid that cystic specialists are only interested in cf parients. The good news is that he does not have it but you are going to need a respiratory consultant who understands PBB and bronch. This may mean an internet search because they are usually at big teaching hospitals, a battle with your GP for a referral and a long drive to see the consultant. The fact that he has had so many pneumonias is not right and pneumonia is what does the damage. He needs the treatment and care and you need the support. If he produces mucus he needs to be taught to cough it up every day to prevent the bugs in there having a party and creating more infection. A good physio can teach him this and also at this age if he is taught how to breathe properly it will be very important in his future well being. With both of these conditions I would say that it is vigilance, self management and making the medics give him what he needs that is the lifelong routine.

I have had a normal life , travelled and lived abroad, worked, brought up two children and still guide at a heritage attraction, socialise and have lots of interests.

Knowledge is power and control is crucial.

It may be a good idea to phone the BLF helpline to find out if they can suggest a specialist in your area and for any other support that they can suggest.

[Hidden in reply to Hidden]

A bit harsh on the CF specialists I think. My consultant at the local university teaching hospital is part of the CF team who all come under the respiratory medicine dept. CF is a major cause of bronch and most of the treatment is common to both cf bronch and non-cf bronch.

[Hidden in reply to Hidden]

Cf bronch is different to non cf bronch and the treatment is different. It's not a criticism but a statement of fact that cf specialists concentrate on those with cf because of their many other problems.non cf bronch needs its own specialists.

[MumJones in reply to Hidden]

Thank you very much, its great to hear you have done so well & your Mum did well fighting for you all the time (I know how that feels!!) I have been given strong high-dose antibiotics at home to start the minute he gets any sign of an infection, I also have throat & mucus swabs to take & get them to the labs when needed. Our CF consultant was great but he just didn’t feel he could help him any further. Thanks again for your help & info, I will give the BLF a call

[Hidden in reply to MumJones]

It sounds as though they are on top of it and that you are getting the support that I was talking about. I hope all goes well for you and your son.

[MfgWorriedmum]

My son has PBB too are we the only ones out there! We see a cf specialist who is wonderful and like you I have instructions and antibiotics to hand to hopefully avoid it leading to bronciectasis. Physio is also extremely important to get rid of any mucus lurking in the very bottom Of his Lungs. My son had a flare up in September and last few days had a very sore throat and it’s gone straight to his chest. Ask me anything I really hope I can help you as I had no one at all to talk through as GP’s just didn’t know what to do with him. it’s a very lonely place when you have a sick child and I became ill myself over it xxxx

[MumJones in reply to MfgWorriedmum]

Hello, I am so sorry I missed this reply! You may not even still be a member on here but if you see this thank you! I hope your little one is doing okay? My son is now 5, just started Primary 1 and showing no signs of this leaving him, he still gets ill each time he has a cold 😪