my son has just been diagnosed with this.....

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my son is 8..... for the last 4 years + my little boy has had recurrent chest infections, 5 bouts of pneumonia countless xrays.... bloodtests.... a sweat test... steroids..... and has been treated for Asthma from day one..... I wish it was asthma. Until in February his airways closed and ended up on oxygen/iv antibiotics and again in April....... between these episodes I persuaded my gp to refer him to a different consultant - hopefully someone who would do something..... my main bug bare about the asthma treatment was that it never helped him, neither did the nebulisers -

Thankfully my gp referred him to a consultant from the Royal Brompton and after 2 consultations he has now been diagnosed with Bronchiectasis..... the damage to his lungs is quite obvious even to me having seen the xrays and he goes down hill VERY quickly... before now i have taken him our gp at 6.00pm and been in a&e needing oxygen by 8.30... nothing abnormal could be detected 2 1/2 hours earlier. The poor child suffers with sleepless nights due to the cough and we have got used to him coughing up various amounts of gunk over the course of the day because it has gone on soooooo long..... but why did it take sooooo long to diagnose?????

I have lost count of the times we went to the dr's, emergency dr's and a&e... cant remember the number of times he has been kept in overnight for chest infections... and had to have 10 puffs of his pump every 4 hours knowing it wasnt helping him. I suppose I should be glad that this problem finally has a name but what now?? what do we do, what about the future ????? I look at him and its breaking my heart.

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  • Posted

    Hi Worriedmum,

    I am so sorry your son has been diagnosed with bronch. I can understand how scared you are and how worried about his future you must be.

    This condition relies on good management. Usually postural drainage to clear away the gunk and antibiotics at the first sign of infection. Lots of people with bronchiectasis manage to lead full almost normal lives.

    I am going to post the address of the Bronchiectasis R Us site. You will be warmly welcomed and can ask all the questions you want. There is a wealth of information on there and everyone will support you and be there for you. You will find someone who can give you the information you need to help ease your fears.

    Bronchiectasis R Us

    http://www.bronchiectasis.info/default.asp

    Regards Tessa

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  • Posted

    thank you for your kind words... i will look for the site you recommended

    kind regards

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  • Posted

    Hi worriedmum,

    Just click on the address in my last post and it should take you straight to it.

    Tessa

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  • Posted

    Hi, My name is Becki and I am 29 years old. I have Cystic fibrosis, via Ambry Genetics Lab, and am 3 yrs post lung transplant.

    I run a non-profit group called YOUNGLUNG Support Services, Inc that both uses an email group and summer camp to provide support services for young people, including young adults, with any chronic lung disease.

    I have been doing some research online on childhood bronchiectasis and found there is very little on the subject. I also found there is not even one support group specifically for parents of infanct, toddlers, kids, and teens with bronchiectasis. So, I decided to start one called \" BronchiectasisKids\". I am writing in hopes that if there are any parents of kids with the disorder, they will join the site. That way parents can share their concerns dealing with young kids with the disorder. If you have any teens or young adults with the disorder they are also invited to join YOUNGLUNG, a moderated group for young people with lung disease.

    I uploaded some files to the site parents can look at, and will add more. I also included a file folder for stories so that parents can share their child's story.

    I hope the site soon becomes active ! ! ! The addy is :

    http://health.groups.yahoo.com/group/BronchiectasisKids/

    http://health.groups.yahoo.com/group/YOUNGLUNG/

    If anyone has any questions about lung transplant please feel free to ask.

    

    Sincerely,

    Rebecca R. Snyder

    Director

    29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant '04, GJ Tube

    YOUNGLUNG Suppport Services, Inc.

    1721 Anniston Rd#112

    Jacksonville, Florida 32246

    www.younglung.org

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