bronchiectasis - does anyone have any experience?

[hazeyjane]

ds has frequent chest infections caused by aspiration, we are in a position where we have to decide whether ds needs to have a gastrostomy tube inserted and have the majority of his food direct into his stomach for a time. There is a chance he is also aspirating acid from reflux.

he is 22 months old and has had a lot of problems with his chest, he was in scbu when he was born with respiratory distress syndrome, and had 6 chest infections in his first year, he has had 2 chest infections since Xmas, one of which ended up with him in hospital having antibiotics via drip.

When I saw his gp today she said that the worry is that frequent chest infections could result in bronchiectasis.

I just wondered if anyone has any experience of this? How many chest infections could result in it? I guess the thought of ds having to have a tube inserted seems so huge, I need to have some understanding of the risks of the chest infections that he has.

I am sorry I can't answer your questions about number of chest infections, etc. But I have bronchiecstasis as a result of infections - although no-one is sure how many it took to cause this as it was misdiagnosed for a long time.

If it was my child I would do whatever the Dr's were recommending. I actually have very mild bronchiecstasis and manage to live normally most of the time. But I have to do breathing exercises every day and everytime I have a cold I get very ill. Basically the mucus blocks up my airways, makes me very breathless and coughing lots and lots. It also leads to fequent chest infections as mucus gathers in the chest and gets infected.

So although I manage fairly okay, I would want to avoid any child getting this illness which is a life long one.

Sorry I'm not sure if this is any help at all and sorry I can't tell you more. But might be worth speaking tothe British Lung Foundation. They have a helpline and may be able to answer your more medical questions.

I really hope you son gets better soon.

Thankyou so much for your reply.

I will get in touch with the british lung foundation, it is frustrating because we had to miss ds's appointment with his consultant, and now can't see him until May. I have far too many questions to wait until May, and ds could have another couple of infections by then - in fact he was up in the night with a temperature and a very chesty cough, so we may be on our way to another one already.

Do you mind if I ask another question? Can you see bronchiectasis on an xray? Ds has had 3 chest xrays since he was born and on each one there was a hazy patch on one of his lungs.

I don't know tbh -I don't think so. I know I had an x ray and I don't think anything was shown up. I had thought that with milder bronchiecstasis the damage to lungs was too mild to show up in an x ray. I was diagnosed, and I know was the usual diagnosis tool at the time, by a CT scan and a bronchoscopy. The bronchoscopy (tube down into lungs with camera) was also to bring up the copious fluid in my lungs though, so I don't know if that is necessary.

It was before MRI's though, so I don't know if they would just do that now.

I am happy to answer any more questions, although I am afraid I am not that knowledgeable.

Hello, I have experience of this as DD3 has cystic fibrosis and has developed it. It did show up as a hazy patch on her lung, she has regular chest x-rays, but was diagnosed through a scan and a bronchoscopy.

They do not know exactly when it developed though as she is unusual for a CF patient as she does not generally suffer with chest infections/symptoms and it's those that cause the damage. It was only found during a routine x-ray and had happened very quickly which was a worry. It had only been three months since the previous x-ray which had showed nothing.

Now they have found it she is having IV antibiotics every three/four months, each time lasting for two weeks, which although it's a pain to have to deal with as a family is really helping to keep her well. She has a bronch to clear any build up of mucus in that area which we can't clear by physio and then the IVs. She enjoys her stays in hospital at the moment, it's fun!

I will happily answer questions if you are still worried. Which is a daft thing to say as if you are anything like me you will be worried constantly!

thankyou so much tudorrose, I hadn't noticed that you posted.

Is there a reason why it is iv antibiotics rather than amoxicillin? Is it just that that wouldn't be strong enough?

Do you mind me asking how old your dd is, and how old she was when she developed bronchiectasis?

Also, is a 'bronch' a way of suctioning off liquid? Ds often has a very liquidy chest, and when he has a chest infection there is so much it kind of froths out of his mouth.

Sorry for all the questions, we are still waiting to hear back from the consultant,so all these worries and questions are buzzing around my head!

Hazeyjane. DD has had respiratory problems since birth. She is now 12. She had a g-tube and a trachy. She has had countless chest infections, which led to a collapsed lung and night time reflux was found to be the culprit. We are on a regimen now for life of Omeprazole MUPS for the reflux and Azithromycin for the chest. The latter being a prophylactic antibiotic that you take orally 1 dose, 3 times a week. We also do twice daily Physio. She also uses Ventalin as she has Asthma induced by exercise.

She is snoring again, which is depressing as that means that we need to do a Sleep Study and probably look at doing a fourth jaw distraction. I wouldnt wish that on anyone.

Thankyou Sallybear, you were so helpful on a very whingy thread of mine, a few weeks ago, in the midst of which we found out that he was aspirating food. I made a note of the dr's you mentioned at the JR, because I feel that ds should probably see a chest specialist.

Since starting this thread, ds has had another chest infection, it just seems as though as soon as he gets in any way run down, or has the slightest sniffle, it instantly goes to his chest. At least his gp now gets him onto antibiotics straightaway, rather than faffing around and saying wait and see. She also told me to bring him in daily whilst he was ill in order to have his chest listened to and sats done, because they were quite low.

He has global developmental delay, and it feels as though he spends so much of his time ill, I worry that he is missing out on important developmental time!

He is on omeprazole mups at the moment, although we have just received a letter stating that the video fluoroscopy didn't show reflux (despite the feeding SALT saying that it did).

At the moment I think his consultant will probably go with a prophylactic antibiotic, but until we can actually get to talk to him, we are left wondering!

They can't tell on a videofluroscopy IMO, that there is reflux. The only way to tell is a PH Probe study. If youre not sure what that is, its when they put a probe down into the oesophagus to measure the amount of acid rising. The ph probe is worn for 24 hours. The GERD drugs have to have stopped a week earlier, just to get it all out of your system.

Do you do Physio on his chest Hazey? If not, try and get a referral to a Paed Physio to give you training. You basically cup your hand and soft hit the chest Walls. This then starts to release any muck, before you firmly shake the chest.

The other place to try is Dr Kilner, Respiratory Specialist at GOS. They're very good. We are going there soon to have sleep study done, as she is snoring again. And in this house that means one thing. Sleep Apnoea.

Please message me if you need to talk.