Help needed newly diagnoised Bronchiectasis

My son is 12 years old and recently diagnoised with Bronchiectasis, he is awaiting referal to Londons Royal Brompton Hospital but has been unable to attend school for nearly a month due to infections and hospialisation. I would like some advice of which way to turn, my GP keeps telling me to keep badgering his consultant, if anyone else has had simular experience what did you do? Many thanks.

10 Replies

oldestnewest
  • Oh the poor lad :-(

    I do hope he feels better soon, I'm sure there will be someone along soon who can better advise you - I was diagnosed with Bronchiectasis in Nov 2011 so I'm a relative newbie lol! I've suffered all my life from chest/upper respiratory problems but my Bronch stems from having TB as a child.

    Take care

    Karen

    X

  • Thank you for answering. My son has suffered with his chest since about 10 days old as he was early and his lungs not fully formed, and was diagnoised asthmatic form 2yrs so this is his history which damaged the lungs. I hope you are doing okay.

  • There is a site called "bronchiectasis r us" There is a fantastic amount of info on there. I would advise you tohave a look. It has really helped me and hundreds of others. I hope the little chap get sorted soon and as far as I gather The Royal Brompton is the place to be!

    If it was my little boy I would phone the consultants secretary and express my concerns. You aren't badgering, you are fighting for you son! Good luck

  • Thank you. I have phoned the consultants secretary once this month only to find they had not even sent the referal letter off yet! but I wastold to ring the Brompton directly next week to get an idea of waiting times! We are going to look at Bronchiectasis R Us together after tea!

  • Hi

    Can I suggest you call the helpline on 03000 030 555 and we try try and advise you

    Regards

    Vicky

  • I will definately do that when I get a chance. Thank you.

  • Hi brightside

    Sorry to hear your son has bronchiectasis. He is very lucky having such a caring proactive Mum for an advocate. I also belong to the bronchiectasis r us family along with Mo and there are a few mums who post which you might find helpful.

    You might also want to take up Vicky's suggestion and call the helpline here. The nurses at BLF are very knowledgeable and very lovely to talk to.

    You might also want to telephone your son's consultant's secretary to check out the appointment. If your GP's opinion is to keep badgering, I am just wondering why he/she isn't pushing a bit on your behalf.

    I have had bronch since the age of 5 months old, some eeek 64 years now. This was at the start of the NHS. I am telling you this brightside only to let you know that even when tests and treatments were not as advanced as they are today, I, along with many others went on to do all the normal stuff peeps do. Obviously bronch played it's part, but it was only part of my life - it wasn't my life.

    There have been many advances in tests and treatments and will be many more during your son's lifetime.

    I hope you don't have to wait long now for your appointment. I think you will feel much more reassured and relieved once you have seen your consultant and learned techniques to help keep your son's lungs clear and he is on treatment which will hopefully lessen his infections.

    Good luck to you both - please let us know how you get on.

    Love C XXX

  • Thank you so much for your positive reply and kind thoughts. Our doctor is quite new to our practice but if it had not been for him sending my son to the hospital for appendix they may never have found the bronchiectasis at all! We have already been taught some breathing exercises and some physio to help. Thanks.BS

  • Thank you all for taking the time to reply, I suddenly feel like a weight has been lifted, my son also read your comments and said I don't feel so alone now! so thank you very much.

    Bronchiectasis R Us here we come!

  • Hope you stay with us on BLF too :-)

    XXX

You may also like...