still waiting!!

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was wondering if anyone can help us!!my daughter is 11,since early on she has had so many hospital trips,(lost count after 30)3high dependancy visits,most times chest infections,when 2 doc at hosp said cf then severe asthma,2 sweat tests inconclusive,gene test negative,now on seretide 125micrograms x 4 puffs dily,salbutamol,atrovent,montelukast. still getting chest infections although not many hosp trips lately,(lost count after 40 infections)last month chest inf 10day antibiotic, steroids,usual daily meds-wheezy needed more steroids 3 week after infection again and still bit breathless,coughing bit green mucous..most doc say not follow norm 4 asthma,now know these things arent working and last resort may need go on daily steroids,hate the idea of that for a young child..ct scan done 5 year ago showing small scarring on left lower lobe,what is wrong with her is it bronchioectasis????help thank you anyone who can offer some usefull info!!!!!

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  • Posted

    I am surprised that the hospital has not carried out a ct scan since the last one was 5 years ago. I am not a doctor but that is a long time in the life of an 11 year old child and a lot may have happened over 5 years.

    The gold standard test for bronchiectasis is a ct scan.

    I have asthma and bronchiectasis and if the infection caused by the bronchiectasis is not strictly controlled by antibiotics then the medications I take for asthma dont work properly due to the extra inflammation caused by the infection.

    Bronchiectasis is characterised by frequent infections and some people have to take very frequent antibiotics to stay healthy.

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  • Posted

    thanks for your info,you have given similiar info i got from a lung info centre,they agree she needs more ct scans, doc recomending she has advanced gene test for cf and repeat sweat test although agrees she needs further tests to seek underlying problem!thanks for your help anymore info b great,i feel i am getting nowhere fast enough and since last month coughing again with lower peak flow,i wish the doctors would hurry up and give us the answers,its clear things are not good for her at the moment,im trying not to worry 2 much but my motherly instincts tell me otherwise.how hard can it be to diagnose a child properly,how many doors do you have to bang on before things are resolved?is there anyone else who has or going through this?i just want to make sure she is on everything she should be and prevent infections if poss!!!thanks for the reply's sooo much comfort......bye for now
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  • Posted

    they seem very slow organising the tests and it must be very frustrating but keep bugging your doctors as best you can

    I have asthma and bronchiectasis and take the following medications:

    - seretide inhaler. which contains a steroid and bronchodilator. the steroid reduces inflammation and the bronchodilator opens up the small airways.

    - spiriva inhaler . which contains a bronchodilator that opens up the larger airways.

    - mucodyne capsules which thin out the mucus which makes it easier to cough up

    - antibiotics every 3 weeks or so to reduce the infection cause by bronchiectasis.

    in addition i also carry out physiotherapy twice a day to clear lung of mucus. this can be helped by blowing through hand held devices called the flutter or acapella. these cause the lungs to vibrate which helps to loosen the mucus . hope this helps

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  • Posted

    thanks for the info,will keep on at the doc to sort this out as its gone on too long,she is now back on steroids again and doc asked what she was coughing up,this week its clear sometimes and sometimes yellow in colour,doc wasnt sure wether to give antibiotics again as they are being cautious,the inhalers are not really having an effect and shes quite breathless,shes a tough cookie but i think shes had enough of the doc faffing around!!shes also on seretide,do you have Atrovent,this works a little better than salbutamol but doesnt last long either and she can only have 6 puffs a day,salbutamol just doesnt seem to do anything,i cant believe the doc havent suggested the inhalers your on just to see if they work!mad!one doc suggested last month i bang on her back but only cos the mucous was bad and infection was taking time to go and needing alot,perhaps i should ask if i should do it more often,if it helps it should be done regularly!how long did it take for you to get sorted,im worried she will get worse before things are finally sorted for her....thanks again
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  • Posted

    i would suggest that you ask your doctor to give your daughter a try with the Spiriva inhaler.the reason i say this is because you said that atrovent does work but only for a short time.

    Spiriva works the same way as atrovent except that you only need to take it once a day instead of every 4 hours or so with atrovent.

    i find Spiriva works very well for me.

    Has your doctor suggested that your daughter provide a sputum sample to see if there is infection present and if so what type of infection and which antibiotics are effective? sound like infection to me especially with green or yellow mucus.As i mentioned nothing much works very well for asthma control if there is infection present.

    hope this helps

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  • Posted

    thanks that sounds like something useful i could mention,and also thought myself that coloured mucous was infection,dont understand why they not ask her to give sample of stutum she has plenty of the stuff for months,they always seem to give her amoxycillin(probably not spelt right,sorry)its as if her infections just never quite clear n come back with a vengience!!its quite distressing seeing her out of breath doing little things,that a child her age can do.im still waiting for local hosp to refer her to bigger hosp for tests,i have come accross myself a hosp in birmingham for brittle and severe asthma unit,all the referal reccomendations on their website fit her perfectly,im going to suggest to doc she try there,even though its a good distance away!have you heard of this unit?if so is it any good?they deal with people like her who have different symptons and reccurring infections,unresponce to meds and severe attacks.i think we are having to do the research ourselves these days.in the meantime i will mention the inhaler and see if that helps!! thanks again...
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  • Posted

    have not heard of the hospital you mention.

    taking and testing sputum samples is fairly basic especially with green or yellow colour.

    if your doctor has no information on the type of infection then amoxicillin may not be sufficient. I would ask your doctor to think about augmentin which kills a greater variety of infections. but its still best to try and get the infection identified by sputum test.

    when i mentioned spiriva i checked the leaflet that goes with the inhaler and it stated that it was not suitable for people under 18. This does not mean that you cant get one suitable for children.Need to check with your doctor.

    You are right....have learnt more from books and internet than i have from my doctor! , there is a saying that the squeaky wheel gets the grease so keep visiting your doctor

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  • Posted

    hi bad week this week,the steroids didnt work last week so out of hrs doc wanted her seen by pediatrician on sunday,x-ray showed both lower lobes infection again,said it looked 'streaky',they said the crackles and wheeze and breathlessness wasnt her asthma,put her on clarithromycin for 5 days.if that doesnt work referal to bigger hosp sooner if she gets unwell soon.they tested to see if the ventolin worked by giving 10 puffs n were shocked it had no effect.atrovent is the only thing but not for long.they didnt want her to go home that day untill she produced sputum sample,but let her go and see if she could at home,they could hear she had alot of mucous but its too thick at the moment to cough out,its yellow but im hopeing to send a sample soon when its easier to get up.does any of this sound like bronciectasis?they not sure if this was seperate infection from last month or new one.
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  • Posted

    As someone who has bronchiectasis myself, please accept my sympathy for your daughter and yourself. I know it feels very frustrating and confusing to have this condition.

    You mention that a doctor had suggested helping your daughter to get the mucus up. This is very important and it's something you will need help with. Ask to see a physiotherapist or a respiratory nurse to show you how this should be done. My wife does it for me every day, twice a day and it helps keep me clear of infections.

    You mention about whether she should have another ct scan. There are reasons why the doctors may consider that is not the best thing to do. Ask them anyway and if they say no, ask them to explain why.

    I wish you both well.

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  • Posted

    not clear whether you mean a ct scan or normal x-ray.

    bronchiectasis may or may not show up on a normal x-ray.the only way to prove or disprove bronchiectasis is to have a ct scan. this also has the advantage of showing up some other lung diseases other than bronchiectasis.

    hope you have had or will have shortly a ct scan for your daughter ,this will be so helpful in getting a proper diagnosis.

    all the best luck

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