bronchiectasis in children

[Laki11]

hello. My 7-year-old son was diagnosed with bipolar cylindrical bronchiectasis . I wanted to ask you if it is possible to be cured of this disease, since he is a child? if anyone has experience with this please help me. Thank you

[Hidden]

Hello and welcome. There is no cure for bronchiectasis but it can be managed so that it is possible to lead a normal life. I was diagnosed at 3 with extensive bronch. I am now 72. I have lived all over the world, have 2 children and have had and still have a very full life. At six years old I was taught how to breathe properly and how to empty my lungs every day which is the most important thing. My mother marched me up cliff paths and threw me into swimming pools. Exercise is so important. So is recognising when a bacterial exacerbation is starting up so that antibiotics can be taken immediately. GPs know nothing about bronch and general respiratory consultants very little more. I know more about my bronch than many medics whom I come into contact with do.

Your son needs a paediatric respiratory consultant who is an expert in bronch. Or a bronch spevialist who treats children as well as adults. They have all of the antibiotics and their delivery systems at their finger tips and can advise the GP.

We need to be proactive in our own interests and vociferous in seeking the correct treatment.Being diagnosed at this age means that your son can grow up in control of this condition and it will simply be an added dimension to his life as type 1 diabetes is to my granddaughter.

Good luck and we are here to support you.

[Laki11 in reply to Hidden]

thank you. I appreciate it

[Stratos20 in reply to Hidden]

I agree with everything you’ve said LP. Children accept whatever is thrown at them. We did didn’t we 🤨 Diane x

[peege]

Hi, I'm glad youyour son has got his diagnosis, it must have taken a while and some difficult times to overcome. HopeHopefully you have been supplied with a respiratory physiotherapist to teach lung clearance - vital to keep mucus from sitting in the perfect environment for bacteria to grow ie warmth & wet in the lungs. Bacteria multiplies very quickly & if an infection takes over antibiotics are essential - the modern way is that GPs are told not to 'over prescibe' antibiotics, a lot of them don't twig that that's alright for normally healthy people but definitely not for lung compromised children & adults hence Littlepom's insistence that a bronchiectasis specialist oversees your son's treatment. GPs have to adhere to consultants instructions. It'll be a massive learning curve fofor fofor yoyou, your son & family. Read up as much as you can & take medxs, inhalers as prescribed , practice hand hygiene (at least that's become the normal during covid times) to avoid germs especially at school, check out the NHS NICE guidelines for bronchiectasis so you can be proactive in getting needs met for childhood bronch......here are details of the helpline run by health professionals (we're patients here with various lung diseases) :

asthmaandlung.org.uk

Call our Helpline 0300 555 2800

wishing you and your son the very best and a6pologies for typos, some of us have issues typing on the HealthUnlocked website 🙄

[Hidden in reply to peege]

Absolutely fab and helpful reply

[Laki11 in reply to peege]

thank you thank you so mutch

[Patk1]

Hello and welcome to the forum.im thinking with yr son,youve been thro the mill.the benefit of getting the diagnosis is now knowing whats wrong + learning to manage it.In addition to yr great replies,I'd like to add - as u may know,viral infections like colds/flu etc can, in vulnerable lungs, quickly turn to a bacterial infection. Be watchful+ do insist on seeing gp if u think he's starting.infections cause more lung damage- the aim is to avoid that.x

[Laki11]

thank you. Im greatfull

[cofdrop-UK]

Apologies.for.full.stops.problem.with.HU.A.very.warm.welcome.to.you.laki,although.I.am.sorry.to.hear.your.Son.has.bronch.You.have.had.2.excellent.replies.from.your.new.friends.with.excellent.advice.I.feel.so.much.for.parents.as.I.appreciate.how.hard.it.must.have.been.for.my.ownMum.I..was.diagnosed.with.bronchiectasis.at.the.age.of.5.months.old.following.double.pmeumonia.amd.whooping.cough.in.1948.On.a.positive.it.sounds.as.if.someone.has.been.doing.a.good.job.in.that.your.son.has.been.diagnosed.as.for.some.they.are.undiagnosed.or.misdiagnosed.for.some.years.As.your.friends.have.said.the.2.most.important.thngs.to.do.are.1.to.make.sure.you.have.a.respiratory.paediatric.consultant.who.specialises.in.cf/pcd/bronchiectasis.2.Referral.to.a.respiratory.physiotherapist.as.lung.clearance.is.a.huge.part.of.maintenance.With.good.maintenance.as.Littlepom.has.explained.life.can.be.good.I.have.to.say.lung.clearance.is.a.chore,especially,in.teenage.years.but.to.keep.well.it.really.has.to.become.a.routine.When.those.of.us.oldies.who.were.diagnosed.when.little.there.really.wasn’t.much.other.than.physio.physio.physio.and.penicilin.injections.so.another.huge.positive.is.that.in.the.last.few.years.there.has.been.some.very.proactive.cf/pcd/bronch.consutants,bronchiectasis.specific.research.is.on.the.up.So.the.future.is.looking.good.for.your.dear.son.and.his.care.durimg.his.lifetime.Keep.to.reputable.sites.ERS/ELF.Although.when.I.was.a.PAG.with.ELF.we.concentrated.on.adult.bronch.but.if.I.remember.correctly.they.did.have.a.questionaire.at.some.time.for.paeds.and.I.have.seen.bronch.paeds.as.a.topic.within.their.comgress.and.the.annual.bronch.conference.I.can.ask.comtact.within.ELF.if.you.wish.and.give.their.contact.details.by.pm.if.they.give.permission.I.think.feel.they.would.like.to.have.a.Mum.of.a.newly.diagnosed.child.maybe.in.the.role.of.part.of.the.Patient.Advisory.Group.xxxxxx

[Hidden in reply to cofdrop-UK]

My goodness what perseverence cofdrop to write such a long and informative response whilst.having.to. put. full.stops.after.every.word. You.are.a.star.!.

[cofdrop-UK in reply to Hidden]

don’t.know.about.a.star.hun.I’m.f.annoyed.PMsnowplaying.sIlly.buggers.Wondering.if.their.trying.to.get.rid.of.me.🤷‍♂️❣️

[Laki11 in reply to cofdrop-UK]

thank you

[cofdrop-UK in reply to Laki11]

YWxxx

[Stratos20 in reply to cofdrop-UK]

Yes Cof I’d be f****ng annoyed too 😡 You’re very patient 😘

[Alberta56]

Welcome to the forum. You've received some very helpful advice from 3 of our experts. Hope this helps your son to have a normal and happy life.

[Laki11 in reply to Alberta56]

thank you

[PAP48]

Welcome Laki11 - great advice already given to you. I’ve had Bronchiectasis all my life, I’m now 75, active and enjoying life, on holiday in Cyprus as we speak. I wholeheartedly agree with everything previously said, the only extra thing, I think, is to have a great respiratory team to help your son. For me my respiratory nurse and physios have been invaluable. Together with a consultant, I could not have better care. Have all this in place and you’ll feel your son is in good hands. Hope this helps. Take care.

[Laki11 in reply to PAP48]

thank you. I appreciate It

[Lizzab]

My father-in-law had bronchiectasis and died of bladder cancer at 88.

From a child he had a productive cough which never gave him any trouble apart from having to bring up phelm daily. Never breathless.

I'm hoping your child will have a long and manageable life.

[Laki11 in reply to Lizzab]

thank you so mutch

[cofdrop-UK in reply to Lizzab]

Hi,Bronchiectasis.is.not.transient.as.the.damage.is.done.However.exaserbations.are.transient.the.reason.for.good.management.is.to.try.and.keep.the.status.quo.Do.you.have.the.link.of.the.online.prof.please.xx

[Lizzab in reply to cofdrop-UK]

No I've tried to find it. It is extremely rare for it to be transient that's probably why your consultant never bothers to mention it and because by the time you're sitting infront of a consultant after a few months of trying to get to the bottom of you're problem, any transient period is long gone.

Perhaps it's easier to understand by saying bronchiectasis can be a transient feature of a pneumonia. Rarely seen.

[Laki11 in reply to Lizzab]

thank you

[cofdrop-UK in reply to Lizzab]

It’s.a.shame.you.couldn’t.find.it.This.thread.is.not.about.me,nor.is.it.about.my.Professor.or.Lead.Clinician.and.3.other.consultants.I.see.within.the.cf/pcd/bronchiectasis.team.I.have.sat.in.fromt.of.for.74.years,so.please.don’t.make.this.personal.

[Lizzab in reply to cofdrop-UK]

It was a general response not a personal one. 'You and Your' is used in general terms often

[cofdrop-UK in reply to Lizzab]

I’ve.found.this.about.a.case.of.psedobronchiectasis.ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to cofdrop-UK]

yes - pseudo is the word. In other words a misdiagnosis of bronchiectasis when it is not.

[Hidden in reply to Lizzab]

no you are completely wrong. Bronchiectasis comes about as a result of an insult to the lungs which results in the damage which is bronchiectasis. This used to caused by childhood illnesses such as whooping cough. Today it is more usually incidents of pneumonia, repeated infections or long term asthma. cystic fibrosis also results in bronchiectasis. Mine came about because I had six bouts of pneumonia in my first five years which damaged my lungs and caused the bronchiectasis which Ihave lived with for the last 69 years. I can tell you from personal experience, as can cofdrop, that this is definitely not a transient condition. I have spent hours with my excellent bronch specialists and they would laugh if they heard what you are saying.

If you do not wish to believe knowlegable long term bronchiectatics do look at the website of the British Thoracic Society.

[Lizzab in reply to Hidden]

I honestly don't think you read or understood anything I wrote

[Hidden in reply to Lizzab]

i don’t think thatyou understood what you have been reading. The condition you mention which appears to resolve itself has never actually been true bronchiectasis but has been misdiagnosed as such. It is pseudo bronchiectasis - false bronchiectasis.

[Laki11 in reply to Hidden]

Littlepom :I'm sorry to bother you again. I wanted to ask you what form of bronchiectasis you had as a child? Cylyndrical. Varicose. Or cystic?

[Hidden in reply to Laki11]

In those days they didn’t define it. Now I know that I have all three. It still amounts to the same thing. It has to be managed.

[Laki11 in reply to Hidden]

thank you

[Milandra17 in reply to Lizzab]

I had pneumonia. Does that explain why my bronchiectasis has seemingly disappeared?

[Lizzab in reply to Milandra17]

Possibly. I actually have no idea though.

My bronchiectasis has improved since diagnosis 10 years ago. Learning different management strategies have worked so far. Long may it continue.

I hope your improved condition stays with you, I really do.

[Milandra17 in reply to Lizzab]

Thank you, I hope you keep well too

[Thepainterswife]

Hi , I’ve no experience of this condition , just wanted to say hello and welcome you to the site . You’ve had some great advice so I hope your feeling less apprehensive about your sons future 😊 xx

[Laki11 in reply to Thepainterswife]

thank you

[Digger0]

It is not curable (yet!) but with the correct medication, physical exercise and correct breathing techniques he should be fine. I was eventually diagnosed at 70, having had chest infections for 50+ years and was an active mountain rescue hill team member and still go out walking and backpacking and dig on excavations!

[Laki11 in reply to Digger0]

thank you digger0

[Izb1]

Hi and welcome to the site Laki11. We have some members with a wealth of knowledge on bronchiectasis and am sure can answer your queries. Its good to have as much information about bronch as possible to get your son through the infections he will have in the future x

[Laki11 in reply to Izb1]

thank you izb1