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  1. #1
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    Default Bronchiectasis in young children

    In 2008 my 15 month old was diagnosed at the Royal Children's Hospital, Brisbane, with Bronchiectasis. I was devastated and desperate to make contact with other parents who's children had the same problem, however I came up with nothing. I searched many parenting forums but was unable to find anyone with any experience with childhood bronchiectasis.

    Yesterday, after almost 4 years, we had a CT scan to see how our boy has responded to the treatments that Dr Wainwright in the paed respiratory department had set out for us and the findings were nothing short of extraordinary! The lung damage was all but 100% gone and his lugs presented as healthy as any other child. It was more than we could ever have hoped for! We are so grateful to the hospital and Dr Wainwright in particular.

    I just wanted to post this in case there were any other mums out there worrying about what this diagnosis means and whether there is any good news on the subject. I would be happy to share any information that might make someone else's journey less terrifying than mine.

    A

  2. The Following 6 Users Say Thank You to louie22 For This Useful Post:

    Albert01  (15-03-2013),destavs  (18-05-2015),fairlady  (16-03-2013),giggle berry  (04-04-2013),Tess86  (30-03-2013),TwoMunchkins  (28-10-2014)

  3. #2
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    Thank you for writing this. I am currently in the Royal Children's in Melbourne with my 19 month old, he was diagnosed with bronchiectasis at the same age as your boy. Please, tell me more!!!

  4. The Following User Says Thank You to fairlady For This Useful Post:

    Tess86  (30-03-2013)

  5. #3
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    Hi Ladies, i am glad that i just came across this - i have a 17 mnth old daughter who also has just been diagnosed with Bronchiectasis and we are waiting to be seen at PMH for further testing (her Respiratory specialist has had to hand us over to them) . My daughter's Grandmother also suffers with Bronchiectasis so does her Aunt so it seems to run in my husbands side of the family.

    We just had her Cystic Fibrosis test come back negative so that was a huge relief - even her specialist thought there was no way it would be negative becuase of her most recent chest xray - it was not good. Our specialist is sending us to the childrens hospital for care now as we have to take her for a Bronchoscopy, CAT Scan and blood tests - how did your kids go with the tests and what sort of treatment plans where you on.

    Thanks Ladies, so hard to find anything out about this.

  6. #4
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    Default Hi!

    Hi Tess,

    We have just had a BAL, bronchoscopy and 2 weeks of IV antibiotics and physio. No one has suggested checking for CF with us, not sure why not really. He coped with these really well, we were a little stressed but nothing to worry about. We have had a few different tests since Sam fell ill and it is so hard as a mum to hold them for blood tests and watch them go under but believe me, kids are amazing, resilient and gorgeous. They bounce back.

    So our story is...My son was fine until he turned 1 then we all came down with a hideous bug, an adenovirus. It set off an immune response in him that was hideous (don't google HLH, it's terrible, we were told at the time to "hope for leukaemia"). His non-existant immune system made him a sitting duck for pneumonia which we assume is the cause of his bronchiectasis. Unbelievably he recovered from the immune thing but his lungs are still full of inflammation and his right middle lobe is partially collapsed. He's still on oxygen after all of this (prob because of the collapse) and is quite wheezy but is otherwise a healthy child (20 months old). I think he's unusual in the bronch world- they were actually looking for something else when they discovered the bronchiectasis via cat scan. Also they say that different areas of his lungs are affected rather than the expected ones. So we have a big question mark for the future.

    Having said that, we are being positive. It is a time of great growth between 1 and 6 years of age, anything can happen and we now know what to look out for.We are using hypertonic saline via a nebuliser twice a day, have bought a trampoline and are doing lots of physio. Avoiding colds like the plague and focusing on good nutrition.

    I'd love to stay in touch. It does seem to be a condition of the older generation so it is good to talk to parents going through the same thing. We are going through the Royal Children's Hospital in Melbourne. Where are you?I was so heartened to read the top note from louie- haven't heard back though.Louie, where are you???

    We are having another chest xray this Friday, hoping for improvement. Will let you know.

    Best of luck and keep in touch.

    F

  7. #5
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    PS Will let you know treatment plan when we find out Fri.

  8. #6
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    Hi Fairlady (sorry don't know your name hehe)

    Thanks for replying .

    Im so sorry to hear about your son he sounds like he is having a difficult time and you. I am so glad that his immune system fought back and hopefully its only upwards from here as he recovers. My daughter is not too bad (at this stage). We are in Perth so my daughter will be going to Princess Margaret Hospital for Children. Good luck with his tests coming up on Friday as well i hope they are filled with good news.

    My daughter started falling ill pretty much from the time we took her home when she was born. Her story quickly is that she was born at 36 weeks and suffered from TTN (Transient Tachypnea of the Newborn) which is basically fluid on her lungs, she was put on a CPAP machine for a total of 36 hours, she came home after a week in hospital and all seemed fine until about 2-3 months. She kept getting Bronchiolitis (it never seemed to go away) and bouts of constant ear infections we then went for our first chest xray which came back saying there was Chronic Bronchitis and to check for Immune problems or Cystic Fibrosis. We then saw the specialist but my daughter seemed to have gotten completely better, it was only for a total of 2 months and the hacking cough and runny nose etc came back. I took her straight for her Chest xray which came back saying she had an infection and that they could see Bronchiectasis, again they suggest CF. Her specialist had given me the form to get the sweat test which we did as soon as possible, thank fully it came back all clear (her speciliast after seeing the xray was sure she was going to have CF). This has all really happened in the last month so we still don't have many answers.

    I am waiting on hearing from PMH for the appt for her Bronchoscopy, CT and various blood tests, i am definetly not looking forward to taking her for those.

    I am so glad i have found another parent going through this. My daughters Grandmother has it aswell but she also doesn't know why and hasn't been given anything but antibiotics (she is looking for a second opinion)

    I will definetly stay in touch with you, i hope all of Sam's test are okay and he gets better.

    Take Care
    Tess

  9. #7
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    I can give you my email address if you would prefer to stay in contact that way as well, im also on facebook

  10. The Following User Says Thank You to Tess86 For This Useful Post:

    fairlady  (06-04-2013)

  11. #8
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    Hi Tess,

    Gosh, it's hard isn't it? The not knowing is so frustrating. Hopefully the bronchoscopy and CT will provide you with answers too. I assume you are nervous as it will be under a general anaesthetic. It is scary, we've been through 4, but I couldn't believe how well he bounced back each time. The procedures themselves are quite quick. Will they take sputum samples to test?

    Our Fri appt chest xray showed some more improvements, it's gradual but heading in the right direction. Less inflammation all over but still a concentrated patch on right middle lobe. They have put him on an antibiotic (Azithromycin) which has been shown to also have anti-inflammatory effects so hoping that will help further. Looking at trialling dropping his oxygen too which we are all cautiously excited about. BTW, after your post I asked our doc why they haven't tested for CF, said he didn't tick any other box and they don't do sweat test on kids on O2.So it sounds like we are both in the same "who knows" boat. We will have another CT in Oct if no great improvement by then.

    I'd love to stay in touch. My email is fairlady@live.com.au and I'm on Facebook too. Take care, stay strong.

    F (for Fairlie!)

  12. #9
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    Tess,

    Have you been yet? How did it go???

    F

  13. #10
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    I too thought I would share my story about this disease as while there seems to be plenty of information about this disease and studies been undertaken, there is not a lot on personal experience where it is a child who is diagnosed.

    I hope I don’t bore you with the detail, but I would have liked to have read more detail about someone else’s experience when my son was diagnosed.

    PNEUMONIA
    My son came down with a pneumonia in November 2013 when he was 17 months old.

    Of note is that prior to this pneumonia, he had a chest x-ray in October 2013 which showed his lungs were clear – hence there was no condition prior to this infection.

    He had initially been unwell for around 10 days. It had started with conjunctivitis, but he had seemed to be improving. He had suffered many colds since he was a baby (first at 2 weeks) so we were not really concerned.

    On the Monday he had a near choking episode on some watermelon but was okay afterward. We do not know if this had any significance in what occurred next.

    He first became what I would describe as ‘listless’ on the Tuesday. His temperature was over 39. I booked an appointment for the GP, but decided to take him to the hospital. They put him on oxygen for a short while and bought his temperature down with nurofen (he would just projectile vomit Panadol). They took an x-ray and gave me some antibiotics to give him and encouraged me to keep his fluids up.

    His demeanour improved as his temperature dropped and we went home after about 5 hours. The next day he seemed to improve. From memory I couldn’t get him to take the antibiotics or nurofen. He was all good until ½ hour after his bed time when he vomited. It was generally downhill from there.

    His temp nearly hit 40 in the night – but my husband was away and I had the care of my daughter to think about too. I had my neighbour on standby just in case. Things also seem to be worse in the night and I thought I would wait until morning. I kept him drinking throughout the night and kept a close watch.

    On the Thursday morning I dropped my daughter off to day care and headed straight up to the hospital. It did not take them long to decide to admit him. They commenced oxygen and put in a cannula to give him fluids and medicine. We still had to force in the nurofen, which was not fun. We spent 5 nights in hospital.

    His temperature would spike near 40 and he would be flat out. Then after the next dose of nurofen, his temp would come down and he would be sitting up looking a lot better. The oxygen came off mostly on the Saturday, the Cannula failed for the third time on the Sunday morning,. At that point they opted not to replace it and to change to oral antibiotics.

    The temperature spikes became less often and he seemed to turn a corner on the Monday morning when we were released.

    One of his tests (blood I think?)came back with Adenovirus and they suspected a secondary Bacterial infection.

    FOLLOW UP AFTER THE PNEUMONIA
    About 6 weeks later we went back for follow up. His x-ray was still not clear and they could hear “crackles” on his lungs. He coughed for several weeks after the pneumonia, but had stopped coughing altogether (one of the main symptoms of Bronchiectasis is cough).

    We were booked in for another follow up. In the meantime I took him to the hospital again as he was unwell and had a high temp as he had before. This time we hit the antibiotics early and he came good.

    The next appointment, his x-ray still wasn’t clear and it was at that point we were told that they were arranging for a Bronchoscopy in Brisbane. We made the trip from Townsville to Brisbane for the Bronchoscopy in March 2014. They thought that he may have a watermelon seed down there due to the choking episode which was still causing probalems. They didn’t find anything but inflammation. They took some samples and he also had a CT scan.

    It was the result of the CT scan that showed the Bronchiectasis.

    We had 5 days of IV antibiotics at the Royal Brisbane.

    I recall a number of key points from the conversation with the specialist before we left:
    · Based on statistics, he has a 40% chance of growing out of this by the time his lungs mature – they will repeat the CT scan at around 6 years of age.
    · If he does not grow out of this, then his lungs should be at least 50% better than they are now
    · In the event that he has a wet cough for 3 days, he is to commence antibiotics – this is regardless of the 50% chance that his cough is caused by a virus, because they do not want any bacteria taking advantage while he is unwell. The course of antibiotics is to be longer then a normal person and is to last for 10-14 days
    · If you have Bronchiectasis when you are an adult, the damage is irreversible and you have to live with it

    Further follow up in Townsville – He was started on long term Azithromycin in May after his x-ray still wasn’t “as good as it could be” and also because he had been unwell again. We tried the syrup – but he kept spitting it out (and that Banana flavour is awful!). We mixed it with everything we could think of but nothing worked (this medication costs $30 each bottle, there are only 6 doses in the bottle and it has a use by date of 10 days! A dose is given three times a week). Every time he spat it out – that was another $5 down the drain, but more concerning was that he wasn’t getting the medication. We did try holding him down and blocking his nose and he still managed to push it out with his tongue. We went back to our next appointment and asked if we could get a tablet and crush it up – and that is what happened. We crush up ¼ of a tablet and mix it in Nutella and he takes it quite willingly.

    The Doctors from the hospital also give us a script for Augmentin so we can get it in the event of a wet cough continuing for 3 days. The course is to last 10- 14 days

    He has been on a course of Augmentin probably 3 or 4 times since May. The most recent one was last week where his cough continued past the initial cold literally to the end of 3 weeks on Augmentin. Fortunately for him, his cough stopped just in time – as the next step would have been back to hospital for IV antibiotics.

    On two occasions, from two separate GP’s external to the hospital, I have been told to stop the Augmentin after commencing it. Both times I continued the medication – the paediatrician at the hospital said that it is the right thing to complete the 14 days and then continue for a further week if the cough still has not stopped.

    We now have a follow up appointment next week in case his cough recommences. If his cough recommences, then we will be booked in to hospital for IV antibiotics – and that is where we are right now.

    I hope this personal experience has been helpful.

  14. The Following User Says Thank You to TwoMunchkins For This Useful Post:

    destavs  (18-05-2015)


 

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