Bronchiectasis in children

[Gsmum4]

Hi all, my 2 year old has just been diagnosed with Bronchiectasis, are there any other people with children with the same condition out there? Any advice or information would be welcome, it’s all feeling a bit grim at the moment, he’s been unwell since January, a bronchoscopy found homophilius influenzae and that’s where they think the scarring has come from, he had 2 weeks of IV antibiotics in hospital and now home with an oral chaser and some prophylactic antibiotics.

[Ergendl]

((((Hugs)))). There are members on this site who have lived with bronchiectasis for many years. Hoping they will post soon to help you.

[annienell]

Welcome to the forum Gsmum. I'm sorry to hear of your 2 year old's diagnosis. As Ergendl says, we have members on this site who have had bronch since babyhood and I hope they'll be along soon with advice and reassurance.

In the meantime have a look at the related posts, to the right of your post, which all discuss bronchiectasis - you may find useful and helpful information there.

Best wishes, Annie

[peege]

I do sympathise with both you and your poor child, it must have been a dreadful couple of years.

I recall one chap posting regarding his child but mostly as Ergendl says, here are people who've lived with bronchiactasis since very small or like me have developed it from other lung issues.

That's a nasty bug to deal with so I do hope it's clearing up. I would certainly give a child on antibiotics both prebiotic and probiotic powders for a few months. Lots of live yogurt is good too.

A really knowledgable member is Littlepom, she would give you loads of good information, unfortunately she's away on holiday so do come back if you don't get much help.

There's also the BLF helpline, office hours 03000 030555

[maggy12]

Hi I was diagnosed with Brochiectasis at 3 years old, I am 69 now, your little one will be fine if you can keep on top of the infections, I too have had Haemophilus influenzae and this needs treatment ask Drs to check his immune system, mine is deficient and I have vacinations to help correct this, best of luck, and a hug from me x

[cofdrop-UK]

Hi Gsmum4 and a very warm welcome to you, although I am sorry your little one has been dx with bronchiectasis.

I was diagnosed with bronchiectasis at the age of 5 months old, following double pneumonia and whooping cough at the start of the NHS in 1948.

I must have been tough to survive in those days, abeit with lung damage. I also had an inredible Mum, as your child has, who was my rock, and the first paediatrician within my city, who as a kid I loved. Although I was frequently in hospital (as was the case in those days for many) we had very little by the way of treatment. Penicillin injections and physio physio and more physio. I am telling you this to emphasise that with very little compared to the treatments of today, we did ok.

It is true that for many years non cf bronchiectasis was somewhat neglected, but over the last few years there has been a renewed interest in this conditon, much more by way of research. I hope your little one has an excellent respiratory paediatrician with a special interest in cf/non cf bronchiectasis.

The European Respiratory Society are doing so much in regard to non cf bronchiectasis and I was lucky enough to be involved for about 18 months as on of the patient advisors working on the Patient Priorities Bronchiectasis. They are presently doing some follow on work on the paediactric side of things and I wondered if you might be interested. I am sure Jeanette at the European Lung Foundation would be delighted to hear from you. There was a questionaire to parents recently. You would learn so much if you had the time and inclination to be involved. They would be interested to hear your opinions on first consultation and your views from a parent of a child with BE perspective If you are interested I would be happy to contact Jeanette or give you her ELF contact number by PM.

I don’t think we have many parents of children with non cf bronch on here, although we have a very knowledgable Dad of a little one with cf.

I truly believe there will be so many improvements in research and treatments during your little one’s lifetime.

Great idea of dear peege to contact the BLF helpline. The are so knowledgeable in paediatric lung conditions as well as adult.

Wishing you both well.

Love cx

[Beckijo]

My dad was 3 when he was diagnosed but was so poorly with infection he had his left lung removed he ran marathons over the years and is 58 this year and he works and runs around with his grandchildren. I also have bronchiectasis I was diagnosed at 21 following loads of chest infections one after the other I had a X-ray, CT scan and a sweat test to rule out CF as my CT scans didn’t rule it out although I was diagnosed at 21 I think I had this for many years before I was always poorly with my chest. I have bilateral bronchiectasis too I’ve had a tough 7 years with it I tried prophylactic antibiotics but they made my heart condition worse so I have to get by on doxycycline, co-amoxiclav, cyprofloxin or moxifloxicin I have a nebuliser too it was very daunting at first but I’m learning to live with it always chesty and forever panicking when my 2 children pick up a cough or cold from school because I often end up in A&E. Wishing your son all the best!

[Gsmum4]

Thanks everyone for your replies, we have his first clinic appointment on August 6th where I’m hoping to get some more information as we just have the bare minimum at the moment, I should also get his immune blood test results back in this appointment. Just to mention as well, my dad, who has COPD has also just been diagnosed with Bronchiectasis just 4 days before my son was, he was also in hospital with homophilus influenzae as well as another infection, and a CT scan showed this, they were in the same hospital at the same time!!

Cofdrop I would love to hear from your friend but I’m not sure how to PM on here yet, but you can pass my details on, I think research is a good thing on the paediatric end as I can’t seem to find anything online about children with this condition xx