poorly little lungs

my daughter is 2, since having her MMR she developed an infection, which causes the same symptoms as CF, she has had her sweat test and it has come back negative. she has a course of co-amoxiclav and usually the thick muscus subsides for a few days while still receiving the medicine. After a few days have passed after the course it comes back aggressively, we struggle to get her temp down this often results in rigor convulsions. She has been on several different antibiotics and penicillin for the last year, co-amoxiclav is the only one that gives her some respite from the continuous infection, she has been on it for 10 months now. we normally have a visit to A&E or her consultant every 2 weeks, she is supposed to be having an adeno-tonsillectomy but they wont operate while she is this way, it is a viscous circle as she is only well 2-3 days after the course finishes, no one seems to no what's going on with her, as this has gone on for over a year she copes generally well, most of the time, this helps me because she is not visibly suffering on the outside, I am scared for her, it's heart breaking. Does anyone have any advice or support, maybe some suggestions of test that can be done as we feel the consultants are suggesting that they have approached every angle but she has only been tested for CF, she has a very poor immunity she did not have her boosters because she was very poorly when she was due them, we were advised by the DR she could not have them. Any advice would be greatly received. Sarah

10 Replies

  • Sarah, my heart goes out to you and your little girl, how hard this must be for you seeing her so poorly.Has she been tested for Alpha1 Antitrypsin Deficiency? I hope and pray you get some answers soon, wishing you the very best, huff x

  • Thank you Hufferpuffer, No Lily has not been tested for this deficiency I will be sure to request this at her next appointment on Monday, in the mean time I will read up on it. Many thanks for your speedy response x

  • Oh little girl, how much she has to deal with, Sarah. I have no advice to offer Im afraid, just want to say hello and that Im thinking of you both.

  • My heart goes out to you and to your daughter. I hope they find answers for you soon. xx

  • Dear Sara, l do feel for you and urge you to contact the BLF helpline and to maybe seek a second opinion. Do you have family and friends who can support you.

    Please don't despair, this site id here for you. Xxx

  • so sorry to hear all that your little girl has gone through , must be such a worrying stressful time for you , I do hope they find what is wrong and she gets the right treatment ,

  • Sorry to hear what is wrong with your daughter. It sounds very much like what my grt grandson went through and still is. They have just done the sweat test and my granddaughter was getting the results today , as to whether he has CF. He has been on anti-biotics for the last yr.Just been told he hasnt got CF. They want to put cameras every where, to find out what is going on.

    Hope you find out what it is soon its heart renching when there is something wrong with your children.

    Sending hugs for the pair of you. XXX


  • I do sympathise as my daughter who is 42 now, coughed constantly when she was a baby, toddler and young child. But she had eczema as well , she was diagnosed with asthma when she was seven.

    Has your daughter had any allergy tests at all, mine is allergic to most animals, pollen, house dust, nuts.

    Your post has brought back memories of sleepless nights listening to the cough.

    Best wishes

  • My daughter is now 41yrs she is my baby. She has been diagnosed with Aplastic Anemia. Its my great grandson who is similar to this little girl. His sweat test was negative for SF. They have now said they want to put cameras down his throat to look. XXX


  • Im so sorry to hear your daughter is going through this and you're having such difficulties getting a diagnosis. My 9 year old son has a permanently collapsed lung / Bronchiolitis Obliterans. It's tough to see your child struggle!

    I've found the charity chILD (children's interstitial lung disease) very helpful & informative. It encompasses a range of "unknown" lung conditions so someone might recognise your daughter's symptoms?

    Their website is:


    And if you're on Facebook, they have a great community group:


    Hope you get some answers soon.

    Best wishes,


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