Bronchiectasis in children

[Pauline474]

Hi my 9 year old was recently diagnosed with this, does any one else have a child with this. (He also has other health issues)

[onamission]

I'm sorry to hear about your sons diagnosis I don't have a child who suffers with this but I do hope you son is feeling better soon

[Pauline474 in reply to onamission]

Thank you for replying

[Hidden]

hi Pauline...i have read on here that some people with this condition have had it since they where very young children. am sure when they read your post they will be very happy to help you.

it must be hard for you but the more you find out and learn about it the better you will be able to coup.

best wishes for you and your child.

[Pauline474 in reply to Hidden]

Thank you for replying

[Carnival567]

Very hard for such a young child, you must be worried. I do hope you get some helpful advice xx

[Pauline474 in reply to Carnival567]

Thank you foe replying

[cofdrop-UK]

A very warm welcome to you Pauline although I am sorry your little Son has bronchiectasis.

I have had bronchiectasis from being a baby in 1948 but my experience as a child would probably not be of any great help to you (different times), except to say the main thing we can still do for ourselves is for you and ultimately you Son to do lung clearance physiotherapy every day. Unless he is obviously unwell it would be great for him to do as much excercise or sport as he wishes. I feel this is particularly important during the teenage years (when compliance to physio is not high on their priorities) as it is also very helpful in mucus clearance

After many years there has been a renewed interest and funding into bronchiectasis and I feel that there will be improved tests and treatments during your dear Son's lifeftime. Trials are happening right now.

I can only recall one member on here who has a child older than your son and I hope this lady will reply to you. There is a Mum of a child on Bronchiectasis R Us who is very experienced and I am sure you would find it helpful to chat with someone who has been and still is where you are now. I am also on this site but with a different username. I hope you will stay with us on here at BLF, as this is a very supportive and informative site also.

I hope your son is under the care of a respiratory paediatric consultant with a special interest in cf/non cf bronchiectasis.

With the correct treatment and self management your Son will have a good life. With bronchiectasis, especially in the adult system we need to be our own advocates and your Son is lucky to have a brilliant and proactive you as his Mum fighting his corner and he will learn from the best. My late Mum always fought my corner and it was much more difficult in those days as the medical profession then were a closed shop.

You can always telephone BLF - they don't only specialise in adult respiratory problems and if you have any specific questions or need support or a chat please post, there will always be someone around.

Love and hugs to you and your Son.

cx

[maisie15]

Hi Pauline my daughter was 20 when she was diagnosed after a constant 18 months of continued chest infections. She has asthma since a baby although I now wonder how long she has had bronchiectasis for as she has had a horrendous cough since she was a baby also. We are still finding our feet and our gp has not been a great help as they seem it know very little about the condition. I can't give u much advice as we are very much in the learning stage also.

[Tomcat98]

Have had bronchiectsis since I was a child , now in my seventies ,best advice is to try and keep lungs clear , physiotherapist can give best advice on how to do this at home , good luck.

[Mumtosmileyface]

Hi,

My 11 year old son has a permanent collapsed lung / bronchiolitis obliterans. Have you heard of the charity chILD? They focus specifically on children with interstitial lung disease. I've posted links to the website and their Facebook group below. There are other children with bronchiectasis there as well xx

childlungfoundation.org

m.facebook.com/groups/10892...

[cofdrop-UK in reply to Mumtosmileyface]

This is brilliant information Mumtosmileyface. cx.

[Mushca]

My son had it since the age of 4. He is 28 now. He developed copd as result of it. He has 18% lungfuntion. He is a attorney with he's own practice. We fisio him daily.

[Pauline474]

thanks for all the reply's. was going to reply individually but thought i would do it as one hope thats ok

my son has had asthma since he was around 2/3 after a few episodes of croup, he has had a constant cough and cold since then. he has also got varies allergy's, muscle and joint issues as well as a few different other health issues. we had no idea that he had this it wasnt till our allergy nurse said that some think was going and we were sent to brompton for tests that we knew, i have been fighting years but all i have ever been told was its just a cold his fine!

[cofdrop-UK in reply to Pauline474]

So sorry your son has other health issues along with the bronch. Late or misdiagnosis is sadly something we hear of all too frequently,but I am so pleased for you he is under the care of the Brompton, an excellent thoracic hospital.

cx

[moodygirl]

I've had bronchiectasis since I was a young child, 66 now. Married, had two children, worked full time.

I'd say the most important thing is to get your son to clear his chest every morning and again after school or before bed. My parents tried to get me to do this but I was always too busy, and latterly when I was working there didn't seem to be time. Now I'm retired I appreciate how much better I am for doing it - not having that embarrassing cough all the time, sleeping better.

I played squash, badminton, hockey and I'd say they kept the mucus from settling and helped strengthen the lungs. I'm a keen golfer now.

Your son needs to avoid people with coughs and colds if possible. He should keep his immune system healthy with Vit C and D. A healthy diet is important too.

Hope this helps. As you can see from my reply and others, it's possible to live a full and active life.

😊

[Pauline474 in reply to moodygirl]

I am very lucky that he does his physio and nebs, I try and keep him active but hard with his joint pains

[Offcut]

I was that child. I had it nearly every term and was off while it ran it's course. There is far more out there to help now than what I was given.

[mikefa]

My eldest son seemed to be hardly at school between nine and 12. My youngest was diagnosed with Celiac disease. Both grew out of their difficulties, try not to worry, coax them to exercise and participate in sport. They will get better but it is a worry at the time i feel for you.

[Pauline474]

Thanks all for replying and advice