Hello everyone. I hope those of you reading this with bronchiectasis are feeling well right now.
I have a 14 year old son with bronchiectasis and I wondered if anyone here has experience with children with the condition. My son got it after contracting a superbug in hospital seven years ago. He takes azithromycin three days a week and does airway clearance daily. However, I am worried that as he gets older it will get increasingly difficult for him to comply with the airway clearance, and I will have less control over him! He currently accepts it's part of his life, but his clearance technique isn't always great. I try to encourage him to get as much exercise as possible, but you know - he's 14!
Any thoughts at all that could help our situation would be gratefully received.
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SunshinePlease
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Hiya.welcome to the forum.ive got it but ive no young family with it.could he join a team sport,whatever he likes best.do any school friends go gym or jogging? Always easier when someone to go with. think he would soon realise,lung clearance is the way to go as it would cause more coughing+ discomfort if he didnt
I have had bronch since I was 3 yrs old and have been managing it myself ( with the help of my consultants) since I was 6. I am 74 now and still going. For four years I went every week to Leicester to learn how to breathe and how to clear my lungs. I have had to do it every day, ever since and this way I have had a very busy and productive life. Had 2 children, lived and worked all over the world and am still going strong.
There is no question of choosing not to do it properly. His health and quality of his future life rely absolutely on his learning to do this and faithfully doing it. Encouraging is not enough. He needs it impressing on him that this is what he does to ensure that he stays infection free and has the energy to do all of the activities which he wants to do and to keep up with his friends.
I am sorry to sound harsh but you cannot do it for him. Once he gets control of it he will gain confidence and be able to live like everybody else. (Except no smoking!)
You mention visits to Leicester to learn how to breathe as well as clear your lungs. I’m interested to know what sort of breathing were you taught? I have Bronchiectasis and have always wondered if there are breathing exercises to practice that would help the condition. I’ve wondered about joining a choir as I’ve heard singing might be a good thing to do as well.
Hello there. I was very lucky because this was in the 1950s when nobody knew much about bronch but my parents came across a renegade doctor in Leicester who was developing a way of treating bronch that is similar to today..
I had penicillin atomised through oxygen (now we have nebulised antibiotics) high oral doses of the then new antibiotics, drainage tecniques which have altered over the years to those that are practiced by modern physios. I learned to breathe using my diaphragm and also isolating different parts of my lungs.
Your son is still under paediatric care which may make it more difficult or easier for you to get him the right support.
Everybody living with bronch will tell you that you need a specialist bronchiectasis expert. General respiratory consultants do not have enough training or experience in it and GPs even less.
A bronch specialist has their own physio and nurse and in my experience, the GP is only too happy to have their advice.
The good thing is that with treatment and support from people who know what they are doing your son can come to manage his condition very well and will avoid the mis management that so many bronchs endure for years and which leads to further lung damage.i
Once this all becomes simply part of the daily routine - like cleaning the teeth - life is normalised. Also, even when I have had an exacerbation which is causing me to cough or have to go to empty my lungs when out with friends, I never had bad comments because I let people know what I have. Telling them ‘it is very like cystic fibrosis’ seems to do the job. Strangers staring are simply ignored.
My suggestion is that you explore the paediatric lung services for a bronch expert or look on the website of your nearest large teaching hospital for a bronch expert, ring their secretary and ask if they will take on your son. Then take the name to your GP and insist on a referral.
There is a lot on You Tube about breathing and clearance but I think that face to face with a specialised physio or even a respiratory rehabilitation course would be better. Hopefully this could be available through paediatric services.
You are doing the best that you can. My mother scoured the country to find that ‘crazy’ doctor. Bashed my chest twice a day whilst I lay over a wooden torture implement, made sure I did my exercises and drainage, marched me up cliff paths, into swimming pools and never got me excused games.
By the time I was your son’s age I knew that if I didn’t do all of this the boggart inside got the upper hand. It is difficult to get a young person to think of their health in the future and there is always going to be the ‘kick back’ of teenage rebellion.
Keep perservering. In my opinion the biggest spur to doing everything that one should is that it helps to keep one free of these nasty exacerbations and so able to play a full part in ones peer group and do everything that they do.
My mother never treated me as an invalid which I’m afraid many ‘asthma’ mothers did and it has paid dividends in my adult life where I have come across others who are limited by what they have been conditioned to think their condition dictates rather than taking it by the scruff of the neck and controlling it.
I actually don't do airway clearance anymore. I can cough it up, do a bit of huffing if needed standing at the sink, but it's rarely needed now. I found it too exhausting. It caused blood to appear.
Things that I think might have changed to trigger me stopping all the effort of clearance might have been:-
1. The realization that if I had stuff to bring up it was pretty easy with coughing and a bit of huffing.
2. A change in diet maybe.....I converted to easily digested foods
3. Raised the bed head 6 inches
4. Learned to breath through my mouth only, always. And breathe from my belly not my chest.
5. The right inhalers for my asthma
I know that's not what you asked.
I know this would be impossible for many bronchiectasis sufferers.
... just thought I should mention it as my experience is that things do change sometimes.
Thank you for your comments, I found them really helpful, especially about diet, reflux is a real problem for me and I'm sure it worsens my asthma and bronchiectasis. I am being bullied into providing a sample but I just can't do it. Huffing not working, nothing comes up. Carbocisteine makes me feel sick. I would love to know what meds you are on and how you cope without clearance pls.
bronchiectasis does not always cause sputum production that can be cleared in the usual way . It does get upsetting when you are told to produce a specimen and you cant do just that.
My wife started with Bronch about the same age. Hers was due to an injury while climbing, actually falling, and banging lower back. Result, pleurisy, collapsed lung followed by Bronch. Had no problems until adulthood, but then only relatively minor. Lots of exercise, we ran local Scout and Cubs. She now has Azithro 3x per week annd physio. Encorage him to get outdoors as much as possible, walking, sports or whatever, and try not to show your anxiety. Take care, enjoy Sunday, Chris.
Hi SunshinePlease and welcome to the site. It can't be easy having a teenager with this condition in today's society . We do have a few people on site that have had this condition from being young and hopefully they will advise. My daughter had bronchitis for years when young but thankfully grew out of it. Good luck x
Has your son tried postural drainage to help with lung clearance? The best posture for me is just bending over as if touching my toes, or the yoga posture downward dog on my knees. This causes the mucus in my lungs to flow downward and is much easier to cough up. This seems to speed the process up, and I’m sure that a teenager would like to get the clearance job over asap. Best wishes to you and your son.
I remember being a teenager and asking “why me?” Having to do postural drainage each day was essential and I just had to accept it. It meant I could lead a fairly normal life. Although I couldn’t stay overnight with friends as I didn’t want anyone to know about my daily physio. I managed. He’ll manage. I was diagnosed at 5 years old after whooping cough. I had two lobes removed. I get frequent infections despite taking Azithromycin. It’s my life. l’m 74 and still managing. So many are so worse. Encourage him to be positive. He’ll be fine. Best wishes, Diane 😊
I have a vibrating gun which I get my wife to play on my back when any muck takes a bit of shifting. I can play it on my front myself if I think the clog is there. It's a bit like cystic fibrosis patients having their chests cupped slapped. The gun seems to rattle the mucus loose so it coughs up more easily.
It doesn't seem fair when young people are subjected to one or another health problem. I feel that I've always not been able to run for any distance as well as most. When at school, we were expected to go on longish runs. I used to walk most of the way. There was a run of probably 2 miles, which one lad did in 13 minutes.
Was it measles, whooping cough or influenza that weakened my lungs? Was my dad's smoking? Was it genetic? My dad and all my siblings had lung problems, but they all smoked, so who knows.
Thank you everyone for all your advice and encouragement. Your thoughts are so helpful, especially as we are going to see my son’s consultant this week so I will mention some of these ideas then.
Hi Sunshine, it must be very worrying for you and at 14 it can be hard to care that what you do now will affect you in later life. Although I wouldn't wish your son, or any 14 year old, to have a chronic condition, on a positive note I think it's good that he has a diagnosis now. I coughed for years without being investigated for Bronchiectasis. I had to learn about clearance etc when I was in my late 40's, I'm now in my 70's and I'm still trying to perfect my technique! Young minds can soak information up much easier. Good luck to you both and welcome to this friendly and supportive forum 😊xxx
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