bronchiectasis

[Laki11]

Hello again. /blf.org.uk/. (If bronchiectasis is diagnosed when in its early stages, it’s sometimes reversible. This means that with the right treatment the condition will go away. In two out of three children diagnosed, bronchiectasis can be reversed or improved. ). I found this post on a website. I wanted to ask you, has this situation happened to anyone? Thank you

[TomTitTot]

This article addresses your question. I admit I had a less charitable response when I first saw your comment. Generally the “bronchiectasis “ that you comment on is a temporary symptom not the reality of true disease.

Info

[Laki11 in reply to TomTitTot]

thank you. I appreciate It

[TomTitTot in reply to Laki11]

Laki 11, I certainly appreciate how scared you must feel for your son’s future.

I don’t know if anyone has recommended genetic testing for for him, as that might provide you with more substantive information. As others have mentioned, getting together the best team possible with those who are well versed in bronchiectasis treatment will serve you far better than someone who only has a general knowledge. It is a lifelong commitment and the most proactive approach as your child’s advocate will serve you best. It will also help him to be his own best advocate going forward.

There is an excellent letter to your child’s school that I will try to find the link to. Not all aspects of it may apply but it’s helpful in explaining to the uninformed that your child is not being willful or lazy or any of the many criticisms that sometimes label a child with less visible health issues.

Take care,

Anne

[Laki11 in reply to TomTitTot]

thank you so mutch Anne. I am very grateful

[TomTitTot in reply to Laki11]

Here’s the letter. Sorry that it’s in bits 😏

Info

[TomTitTot in reply to Laki11]

I can’t seem to get it through in one piece

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[TomTitTot in reply to Laki11]

Here’s the last… sheesh🧐

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[Laki11 in reply to TomTitTot]

thank you so mutch

[Timberman]

As I understand this is only in the case of children. This will be due to the fact that the damage which is the cause of bronch (pneumonia for example) can be corrected by the continuing natural growth of the child. But if they are too old it seems this is very unlikely.

If bronchiectasis is diagnosed when in its early stages, it's sometimes reversible. This means that with the right treatment the condition will go away. In two out of three children diagnosed, bronchiectasis can be reversed or improved.

What is bronchiectasis and how will it affect my child?

[Hidden in reply to Timberman]

I was diagnosed at 3. Another member at 6 mths. Irreversible lifelong bronch. There is a miscomprehension here between actual bronchiectasis and very rare temporary minor lung damage during pneumonia which presents like bronch but isn't and so heals as juvenile lungs grow. This whole debate is stoking up false hopes in a parent who as yet knows little of bronch, is distressed and trying to find a way out of their situation and frankly insulting to those who have been managing this irreversible awful condition throughout their lives and yet are reading that ' it could have been reversed if treated soon enough'. Plain nonsence.

[Laki11 in reply to Hidden]

I wanted to ask you one more question: at the time the scan was done, the boy was under the influence of bronchopneumonia. Does this situation affect the dilation of bronchiectasia? Thank you

[Hidden in reply to Laki11]

You really must ask the specialist that question. Their answer will carry a lot more weight than mine could.

[cofdrop-UK in reply to Hidden]

I.just.wonder.what.out.docs.were.p******.about.with.when.there.was.nowt.wrong.with.us!xxx

[Hidden in reply to cofdrop-UK]

Spot on cofdrop 🤣🤣🤣

[Hidden]

You really do need to speak to a bronch specialist who should be looking after your child. Only they can give you a true prognosis and support with his treatment and management. Googling obscure websites is not going to help you and can end in confusion and disappointment, as can engaging with people who have also gleaned their information from similar sources. I sound harsh but I am not. I am truly concerned for you. You need proper professional medical help for your son and I beg you to go and get it.

[Pjmf]

I was diagnosed with bronchiectasis about 7 years ago. I had lots of infections and was very depressed and felt my activities would be limited. However, I now feel as if I no longer have the disease. I know it is chronic and irreversible, but I exercise a lot,make sure I get out of breath every day, and do my best to avoid people with viruses, and I feel completely better. I swim a lot which helps. I now fly again and go in the mountains with 2000m altitude without problems. Cold air gives me trouble and I start wheezing. I do hope my experience gives you hope. I am in my 70s.

[Milandra17 in reply to Pjmf]

Hi, that's been my experience too. Until now I thought I was the only one, I really should have known better.I had 2 years of constant chest infections, a bout of pneumonia and was diagnosed with bronchiectasis after 18 months. Like you I felt my life was over, I couldn't do my previous hobbies, had lots of time off work etc. However, by March this year it will be 4 years since I have had a chest infection 🤞. I always was a keen walker but that had kind of fallen apart. I joined a new walking group for all abilities. At first I couldn't go far without having to stop and rest. But after a period of time I was back to normal. Like you I struggle with the cold weather, but wrap up to avoid breathing in the cold air.

I have wondered whether I was misdiagnosed but I had a CT scan so what else could it be? I'm 64 by the way.

[Laki11 in reply to Milandra17]

hello! at what age were you first diagnosed with bronchiectasis? and what kind of bronchiectasis did you have? cylindrical, varicose or cystic? Thank you

[Milandra17]

I was diagnosed at 59. I'm afraid I've got no idea which sort I've got. It came as such a surprise and I knew absolutely nothing about Bronchiectasis. I don't see my consultant as I was taken off the follow up list when I stopped getting chest infections so I have no way of finding out