Child with chronic periodic respiratory problem which has been undiagnosed for 4 years - please help

Our 6 year old has had periodic episodes of chronic croup with a loud stridor breath since she was around 2 years old. It's horrendous in winter with it happening almost every 2 weeks. She has ended up in a trip to A&E around 3 or 4 times and twice in an ambulance when she was young. They usually give her a shot of Dex (dexamethasone - steroid) and it tends to help her stridor (noisy or laboured) breathing within 24 hours but it does nothing to help the aggressive and dry cough which can last for days on end, happening every 10 seconds day and night which can you imagine is hell for the whole family but especially for her. She misses school, we miss and work and it’s very stressful.

There are 3 symptoms (in order of severity):

The choking cough - this happens at night and she wakes up coughing and it sounds like she can’t clear her throat at all (this tends to happen once or twice within an episode), (like she’s being choked).

The croup - it starts at night but sometimes happens in the morning too. It is dry and extremely loud barking cough with a noisy ‘stridor’ breath and sounds like it is at the top of her voice.

The ‘megacough’ - This tends to be followed or preceded by a consistent dry cough which happens every 10 seconds throughout the day - this can happen for a few days before the croup and a week after it.

The effect it has:

1. It is worrying that she can’t catch her breath with the choking cough. It sounds like she can’t breathe and is very stressful to deal with
2. She misses days off school. She missed 15% of her reception year due to this illness.
3. We miss work to look after her and lose income (self-employed) which adds to the stress
4. No-one sleeps for a week at a time as her cough is so loud it reverberates around the house (and the nextdoor neighbours) and happens through the night, then she tends to wake in the hour of 5am for the day.

Things we’ve tried:

-MLB under general anasthetic to check her airways (all normal apparently)

-Asthma check - no inhalers prescribed at this time

• Reflux medicine to see if it’s caused by reflux. This didn’t work and ended up giving her a very bad tummy.

Things we’ve started to try:

Allergy test. We got nothing back from the blood test.

After seeing so many specialists, they all tend to say that, because she is developing typically as a 6 year old and that she breathes normally between bouts - it is difficult to diagnose, but this is not helping us as every time it happens it is very stressful and worrying and it seems to get more intense every time she has it.

Every medical professional and all advice online says that she will grow out of croup, but her coughing episodes are becoming worse and more intense as she grows and we are desperate to find out what is causing it. Does anyone’s little one suffer with any of this and can anyone offer any advice or help? Thanks

*UPDATE: we took a video of her throat while coughing and a screenshot of that shows something that pops up in her throat at the point of coughing- assume it’s the epiglottis and it’s a U shape - if anyone knows any different please let us know. Photo attached.

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