Our 6yo has a periodic chronic cough since age of 2 - undiagnosed. Please help!

[dpb100]

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 - assume it’s the epiglottis and it’s a U shape. Photo attached.

I’m sorry, that sounds very worrying. When the asthma check was done did they consider cough-variant asthma?

How distressing, for all of you. Have you tried keeping an incredibly detailed journal of what she does/eats on days when it ‘sets off’? Croup is caused by a narrowing of the airways which (although I am no expert) is what happens during allergic reactions I believe? I really hope you get to the bottom of it soon. Sounds hellish!

Im also thinking cough variant asthma.

I have this - Im not any kind of HCP.

@EL0ISE thanks - we've been to asthma specialist and they said it wasn't that, but They can't really be sure as she's still to young to have full diagnosis.

@Cuppasoupmonster cheers. It seems to always be related to a cold virus, so this is why it happens every 1 or 2 months and more regut during winter

Even if she doesnt have asthma.

Using a steroid inhaler regularly over a few weeks may help with her symptoms.

It's much better than getting the dexamethasone which is a much higher dose steroid.

I am no expert but my son who is 3 has something very similar. No attempt at diagnosis yet due to his age. However after his first hospital visit he was given inhalers that he has to have every day. I was told the don't need to be diagnosed with asthma to get inhalers. I'm quite shocked your DD hasn't been given anything to help.

Mine is triggered by perfume / deodorant sprays and cigarette smoke. But If I catch a cold it becomes really bad almost overnight. I cough all the time as you describe. I get a sore throat and splitting headache from all the coughing and of course I don’t get much sleep at all. It’s very hard to function at work , I start coughing when I speak to anyone In person or on the phone.

I take a steroid inhaler at a higher dose in winter when it’s worse . If I get really bad I have to take oral steroids. . I can drop to a lower dose preventer in the summer .

I don’t understand why your DD is not being tried on inhalers @dpb100 . It’s a very low risk way of taking these extremely safe drugs, which are used by millions of people all over the world with very few side effects.

In contrast her symptoms are very hard to tolerate and are stopping her living a normal life.

She definitely needs an inhaler - my daughter doesn't have asthma diagnosed but had a bad cough in the spring she couldn't shift and they gave one happily to us.
Is there any mould in your house? My partner had dreadful allergies in our old house from black mould which caused sneezing and coughing to the point he was sometimes sick in the night.
Another thing - adenoids? They're like tonsils I guess and you can have them out. My cousin had his out as a kid (about 10yo?) due to constant illness and coughs and he's never looked back.

I’d ask them if she can try inhalers . There’s nothing to lose - if it’s not asthma then it won’t be helped by the inhalers.

She needs 4 things prescribed - 2 inhalers ( a preventer and a reliever ) and 2 bits of kit - a peak flow meter and a spacer . Don’t be palmed off with just a preventer ( blue ) inhaler. The inflammation in her chest must be really bad so she will need to get that down with the preventer.

The spacer is a little plastic tube that helps small children (or anyone !) take their inhaler properly . You will puff one dose into the tube and she sucks it slowly out the other end. If she goes too fast it makes a whistling sound so she will learn to go slowly.

The peak flow meter is another type of plastic tube to measure her peak flow. There’s a chart to record her results. That will show if the meds are helping her and if her dose is high enough .

They will probably start her on low doses so they might not Relieve all the symptoms at first. You might need to go back several times to get different types of Inhaler.

I know it all sounds difficult and complicated but it’s not and you both will get used to it very quickly.

When my asthma is under control , all I need to do is take 2 puffs twice a day. It takes about two mins out my life and relieves 95% of my symptoms . When it’s not under control it takes over my whole life ☹️

I am also surprised that they haven’t tried a brown steroid inhaler. You are right that she is too young for an asthma dx but such symptoms are still managed with inhalers in young children. DS (4) presents with similar symptoms plus viral wheeze and is on regular preventer inhalers and under the care of the asthma nurse at the surgery.

PS very persistent coughs should also trigger a chest x-ray to rule out any other issues.

Have she had any scans to see if it's a thyroglossal duct cyst? Or could be acid reflux which can cause coughing too.

My dd has had similar albeit not as severe but a definite tendency to develop cough and croup where the rest of us with get a mild cold.

I’ve used a humidifier (this was back in the days when the worry was that the air was too dry with central heating but if your house is damp or cold you need different advice), and switched up a wet towel on the radiator because I couldn’t clean the humidifier properly and I wasn’t confident that it wasn’t spraying out something nasty . A warm steamy bath before bedtime was advised too (again dependent on a warm dry house).

My gp told me to keep her throat from getting irritated with honey and lemon drinks, to avoid getting into a vicious cycle where the cough irritates the throat and the irritated throat elicits the cough. Steroids will help but my experience was that honey and lemon at the first cough and every time she coughed helped cut the length of the problem.

I really feel for you. There’s a certain sound in her cough that puts the fear in me. Dh can’t distinguish one cough from another, but I know when I hear it we’re heading down a bad road.

Nasal drip?

You'll get good advice on the Pediatric Recurrent Croup group on Facebook. It's full of parents who have children with similar stories to yours. They'd be able to advise on more tests that might be helpful and also other treatment options.

I had a cough all throughout childhood for 6 months of the year. Even the boys at school used to feel sorry for me. I never missed a day of school even if I was up all night with it. I had a nightlight as the air in my room was too dry and as an adult I sleep with a fan directed at my face which seems to stop it.
I've never had a diagnosis other than a long list of things it isn't!

Have they considered tracheomalacia? It’s fairly rare but not unheard of.

Just popping up to say that yes the U shaped thing is her epiglottis. It's unusual but not rare to be able to see it there (actually I've realised I don't know the paediatric situation on that, you can certainly see it in some adults).

@dpb100 how has your daughter been?

My 6 year constantly has a cough, we got inhalers just after she turned 3 to see if they would help. At that point she couldn't even run down an aisle in the shop without coughing then being sick, this went on for over 3 months then got a brown inhaler (preventer)

It worked a miracle but over the last 2 years we are back to the start again, she still uses the brown inhaler, we also have a blue one.
But about once a month she develops a cough without a cold and its terrible at night. She's then absolutely shattered and so am I!!
The inhalers don't seem to work now, we were referred to paediatrics and the doc told me he doesn't think she has asthma and to stop the inhalers which we have but the cough is back again. It's usually bad for a couple of nights with some coughing during the day then it eases a bit.

Her cough is a right tickly one. I have no idea what to do but I feel so sorry for her and its stressful, I have to keep her off school cause she's so tired and I have to juggle my work.

We have a meeting at the hospital in 3 months to discuss things so I have called them to say her cough has returned, I'm waiting for the doc to call me back next week.

My daughter doesn't have a wheeze and never has, just a persistent tickly cough.

She also has a visable epiglotis that was checked years ago and I was told she'll grow into it!! But if she sticks out her tongue I can still see it.

I don't think the visible epiglottis is a problem in itself - some people just do have one.

Has she had any allergy testing? I think my son has a very mild sensitivity to feathers and he's done better with synthetic pillows and dusting

Hope some more knowledgeable people come along - the epiglottis bit is the only thing I can help with really...

Delete that message sorry! Its not wrong but I didn't realise this wasn't a new thread sorry.

My DD used to have a horrific croupy cough on a regular basis. Seriously sounded very ill indeed. Turned out to be hayfever and apparently a reasonable percentage of hayfever sufferers have a cough rather than red eyes/sneezing etc

When checking for asthma did they do a week of peak flows, followed by a trial of steroid inhaler with peak flows, all documented on a peak flow chart ?

I’m not sure if this has been resolved for you or not but I would try and get a referral to see an ENT. My son’s epiglottis looks exactly like that and he has a condition called laryngomalacia which is characterized by an omega shaped epiglottis. He gets croup constantly and has a periodic chronic cough because any type of airway inflammation flares up his symptoms. The loud stridor and multiple trips to emergency are what ended up with him receiving a diagnosis. It honestly sounds just like your daughter. Pediatricians or GPs often brush it off as “just noisy breathing” but it can definitely be more serious in some cases so please try and get a referral to an ENT.