My daughter is 4 an has had over 40 admissions ten plus in hdu and once in intensive care, medical mystery, salbutamol made her visably worse for three years yet doctors/consultant s told me this wasn't possible,now it's down she's allergic.
She is poorly 80percent of the time, she has a persistent cough,chest infections,ear and throat infections,causes low oxygen SATs of 82 to 85.
awaiting lung biopsy results,been told one of two things 'intersertial lung disease' or 'bronchiolitis obliterans'unaware of cause until results I'm so sad with it all ,nobody I know can relate
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Tegan23
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I am so sad and so very sorry to read about your daughter's illness. I have Bronchiolitis Obliterans (Also known as Obliterative Bronchiolitis) and was diagnosed with it just over five years ago. But I believe I have had it for far longer without realising it. My lung disease is caused by an autoimmune disease which started to destroy my joints, then attacked my lungs. I had a single lung transplant last July , so I still have the disease in my left lung. But I am doing well.
If they suspect she has Bronchiolitis Obliterans Organizing Pneumonia, also known as Cryptogenic organizing pneumonia (COP) which is an interstitial lung disease , there is every chance she can get better with the appropriate treatment. Although the names are very similar, Bronchiolitis Obliterans and Bronchiolitis Obliterans Organizing Pneumonia, are different conditions. Unfortunately the former is incurable. However, for some it progresses fairly slowly.
The good news is she has done the biopsy and hopefully very soon they will be able to advise you and start a course of treatment to help her be more comfortable. There are a few of us here with this very rare disease. Katinka46 💓 also has Obliterative Bronchiolitis and will be on to give some advice I am sure.
I can't imagine the fear and worry plus the physical toll this is taking on you, your daughter and family. But I'd like you to know that this is a safe and caring community where you will be supported in all the ups and downs coming your way. You are not alone. 💜
I am so sorry to read your story. There can be nothing worse than watching your child suffer. Caspiana has filled you in with the complexities of these small airways diseases. Unfortunately children can develop OB and it is usually caused by a virus infection. I do hope that the doctors can now get a better understanding of the problem after the latest test results. OB is rare so she should be dealt by a super-specialist paediatric pulmonary team.
This is a great forum and you will get a lot of support from the members.
So very sorry that your daughter is suffering, my three now adult daughters were asthmatic when they were children.....still are but rarely have symptoms now.
I know how painful it is to watch your child struggling to breathe....now I am asthmatic too ...late onset .
My youngest in particular was in and out of hospital.
I also had problems convincing health professionals that Ventolin caused difficulties. It does for me too.....it works at first then it doesn’t .
One doctor I spoke to, said that people of my age (old) didn’t have problems with Ventolin only babies did.....so who do you believe. I actually shouted at another saying that nobody listened . I am fine if I only use it now and then and use a separate preventer, and I have learnt when to get help before I run into real difficulty, ring 111, or Ask my GP or get to A and E or ring 999 in a real emergency. That worked for my daughters too. One uses Bricanyl on occasions, keeps it at hand. One carries Ventolin always, but is careful, gets professional help early. Carries antihistamines. I always carry Ventolin , I have tried Bricanyl, but prevention works best. Others are fine with bronchodilators, we are all different.
My middle daughter had a constant cough from being a baby with eczema as well, runny nose , one had many ear infections.
All are allergic to a variety of animals , pollen and dust. My grand daughter often has a wheeze and cough and eczema.
Has your daughter been given allergy tests at all?
Antihistamines in certain situations or at times of year help mine, I don’t know what the situation is for young children and antihistamines.
I hope you get some answers soon about your little ones condition , I know how heartbreaking it can be to watch the struggle to breathe.
The BLF has a helpline open during office hours for UK residents
Welcome to the forum Tegan, so sorry to hear if the struggles your little daughter is having. You’ve had great replies so I just wanted to wish you and your daughter better days ahead. Xxxxx
A very warm welcome to you Tegan, although I am so sad to hear about your dear daughter’s condition. I have had a different condition, bronchiectasis since babyhood but you have some good information from your new friends on here.
I have so much respect for parents of children who are unwell. We have an amazing dad of a little girl on here who has cf.
I hope you get some clarity soon and with the right treatment things will improve for you both.
So sorry for you and your daughter. Hoping the medics soon identify the reason for all her ill health and find treatments that will give her a better quality of life. ((((Hugs)))).
Thank you everyone for your replies, you have answered some questions,were expecting post tomorrow with blood results to find the cause. Is anybody on hydroxychloroquine? And are there children with intersertial lung disease or OB known on here? XX
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Anyone in this group with constrictive bronchiolitis?
Inhalers, What is available ?
