What steps would you take next?

[PlanetDave01]

Will try keep this as basic as possible.
DD is 3years old and has suffered with chest infection/pneumonia since birth. Has been in and out of hospital many times, had at least one course of antibiotics every month of her life and a year on long term 3x a week antibiotics too.
They tested her for CF and everything they could think of, done swallow tests and under GA looked into her lungs and took a sample. We still have no answers. She is under 2 different hospitals who took her off her long term antibiotcis 2 months ago as they weren't making a difference. She has already had 2 chest infections and 3 weeks of antibiotics since then. Currently still has a productive cough and rattly chest which also is disturbing her sleep.
The hospitals just keep saying "well she hasn't been admitted into hospital in a while so let's just see how she goes and we will see you in another 3/4 months"!! But that doesn't mean she isn't getting poorly, we have endless amounts of time off work with her, she is always tired due to disturbed sleep, on and off temperatures and know who's what long term damage this does to her body with constant infection and long term antibiotics?
What else can we do to get doctors to realise that she is still suffering at home and just because she isn't in hospital dosent mean it isn't happening.

[BlackSwan]

No answers here but just wanted to say I feel for you. Do you think part of the problem is that no one doctor feels responsible for her care? We have been through very serious health problems with our son (different type...but took too long to diagnose). I felt I was alone in feeling responsible for finding answers. Doctors seemed to pitch in with their ideas but our son wasn't their responsibility. Ultimately I put it to one of the doctors point blank that I wanted to know who was 'responsible' for his care - and to his credit that doctor said he was happy to be that person.

Get many second opinions. You have nothing to lose. Keep searching until you are satisfied with the answers you're getting and you have a diagnosis.

[Gileswithachainsaw]

has anyone ever tested her for allergies?

[PlanetDave01]

Yeah I do agree, part of the problem is who has responsibility. We are seen by our local hospital paediatrician but also by a specialist at another hospital. The local one thinks as the other is specialist, they will do all the 'work' as such and they are just here to oversee and review her progress.
Our local paediatrician has offered to refer to a different hospital if we didn't feel the current specialist was any good. But we just feel we will start from scratch again with another doctor who again only sees her when well at outpatients and assumes she is always that happy and seemingly well. No she hasn't been tested for allergies, I wasn't aware this was possible at her age or that they could cause infections??

[Gileswithachainsaw]

They can cause congestion and wheezing/difficulty breathing.

defiantly push for some testing

[Gileswithachainsaw]

I'm also surprised she's not been diagnosed as asthmatic. is she not on any form do inhaler?

[PlanetDave01]

I'll look into that then. Thanks!
She has previously had both the blue and brown inhalers which they hoped would prevent or even reduce symptoms but they made no difference. Even having nebulisers in hospital made her worse as her oxygen levels would rise whilst they were on, but as soon as they stopped, her oxygen levels dropped she started to struggle again. Dr said her body got used to the 4/5 mins while it was running through, then as soon as she went back into room air her body panicked and couldn't cope so needed oxygen.

[Gileswithachainsaw]

start a food diary. see if there's any correlation between severity of symptoms and what she's eaten.

of course it could also be environmental. dust mites, pet hair, fragrances in washin powder etc.

check your house fir any mold or damp- silver fish could he a sign there's damp somewhere. do you get those? (little silver bugs)

[MissLivvy]

I would book an appointment at Royal Brompton hospital in London

[Flopsyfreddie]

Hi. This won't help, but you gave just described exactly what my daughter went through. She is neatly 7 now and not had ABs for over a year.
Gave you been to respiritory physio? They gave her some exercises to do which helped/helps when the cough returns. When she has it she hacks like a70 year old 50 a day smoker.

Was from almost birth til about a year or so ago.