Cough variant asthma. Is there a test for it? Differential diagnosis? Is DD being fobbed off.

[bookmarket]

DD was diagnosed with cough variant asthma around age 12. She's now 17. Inhalers don't seem to do anything and she's been on various. She finally made an appointment to see the nurse to ask 'is it really asthma?' Nurse gave her peak flow chart to track a month. She said she'd refer her if peak flow okay. Tracking proves peak flow does not dip, even when she's having a coughing attack. The nurse then mentions trying another inhaler and mentions montelukast again - which were not happy with her trying. She agrees it might not be asthma and will speak to the GP. DD then gets an appointment through - with the other asthma nurse!

I don't know how pushy to be here. I feel she's being fobbed off. She didn't want to be on medication (inhalers) that do not help. How likely is a differential diagnosis? Is there testing that can be done to rule out/confirm asthma? Does she have any hope of being referred if she refuses to try montelukast which is clearly part of the pathway of things to try with each patient. Going to see the asthma nurse again seems pointless as all they can do is follow that pathway.

We're moving this to the Chat topic for the OP and giving it a bump to get it back into active conversations – do post if you're able to offer some advice.

Ongoing similar issues with my young adult dd - she has been referred for an x-ray now. Perhaps it might be worth asking for one for your dd.

I had a metacholine push test and spirometry to diagnose my asthma.

Mine is cough variant too.

I was told I had asthma in 2014. I then started having constant problems in 2020. I was told that because my chest X ray was clear, it wasn't covid and the steroids weren't working it was anxiety. No one can explain why if it's anxiety I cough if someone sprays something and the weather affects it.

I have an abnormality which isn't asthma in my spirometry. Consultant has no idea what it is and my GP is still telling me it's anxiety. (even though consultant is saying different) But has never given me any help for my supposed anxiety. I have a low (250) peak flow. I'm doing it wrong apparently. It's not hard to do!

Google suggests that asthma is commonly over diagnosed.

DD has cough variant asthma but during a bronchoscopy she was also diagnosed with tracheal stenosis, it might be worth asking about it?

Asthma nurse here. I would say that if her peak flows are normal and there is no response to inhaled medication it's probably not asthma. I'd be taking a thorough history and considering alternative causes of the cough, such as post nasal drip or reflux. I would probably refer as well.

What's your reluctance to try montelukast? It can be a very useful drug.

I had exactly this. Then had to give up cows milk when breastfeeding as baby had a CMPA - haven't had any asthma symptoms for a year now!

My DD has this and after getting nowhere beyond the offer of a blue puffer with the GP I took her to a private doctor who specialises in asthma / allergies and he did tests and prescribed something (that has really worked) that the nhs just didn’t have the capacity to do. Cost £250 but I’m so pleased I did it, also because of the real in-depth, un-hurried chat we were able to have with this experienced, interested specialist about her condition. I know not everyone has the money to spare for a private consultation but I’d gladly economise in another area to get that sort of medical attention. Really glad I went. This is the first autumn / winter she hasn’t been coughing and coughing and it’s such a relief.
GOOD LUCK!

@Breadandbutterandjam what was it!!

I put off trying montelukast for my DD as I was worried by stories about side effects.

However, her cough kept her awake and she was up using her reliever during the night. It used to flare up at about 8pm every night when she would start to cough.

We started about 4 months ago and it made such a difference so quickly. I wish we had gone for it a couple of years ago now and that I hadn’t been put off by scare stories on the internet.

I also give her an antihistamine before bed too (as well seretide which she has been on for years).

Dust might allergy can cause a night time cough so I have started hoovering daily in there and freezing her bedding once a week. I think this helps too. I am asthmatic/allergic and have to do both these things.

Thanks everyone for sharing your experiences.

How old is your DD CornishTin? I have been put off trying montelukast given the potential side effects. She's prone to anxiety, and recently gone through the stresses of GCSEs and then started a new 6th form. If she'd had bad side effects, I wouldn't be certain if it were the medication or external events.

She takes an antihistamine daily. She was tested for allergies when she was 6 or 7. She is allergic to dust mites and cats. I think she reacts to moulds though. Prior to starting asthma meds, she would have a 'cold' between October and December, which could have been the fallen leaves rotting or storing wood indoors for an open fire - we don't do that now! She also used to get red cheeks and dark circles under her eyes when she had school dinners every day. We first noticed her coughing as a reaction to having cordial or sweets. Then the coughing at nights started when she was around secondary age. There are no obvious triggers now though and when she was tested for allergies at 6/7, only the cats and dust showed up.

None of the preventative or combined preventative inhalers have ever taken the symptoms away. She coughs regardless. It is frustrating talking with medical staff as they still ask about wheezing and peak flow and none of these fit her CVA (if that is what she has) She takes far too much of her blue inhaler but claims it doesn't do anything really. If she is playing sport and she feels breathless, it subsides in the same amount of time whether she takes the inhaler or not.

We'd be happier to go along with trying more medications/montelukast if we were certain she has asthma and it's not something else causing the coughing.

Montelukast can help from the allergy side of things too.

not in any way down playing her struggles but could some of it be anxiety related? Have you tried breathing exercises to help control things (Ds is a brittle asthmatic and is currently mid a breathing course through the hospital looking at improving breathing and breathing when feeling anxious as it can all be inter linked)

The nurse then mentions trying another inhaler and mentions montelukast again - which were not happy with her trying.

Id try the Montelukast. It was very effective for my DD with cough variant asthma. It is also not a steroid and so you avoid all the side effects and risks of being on long term steroids.

If she is playing sport and she feels breathless, it subsides in the same amount of time whether she takes the inhaler or not.

If exercise is a trigger for her asthma, then she should be using the blue inhaler 15mins before she exercises. However, I note you said “breathless” not “coughing”. If she is not coughing, her breathlessness is likely due to her level of conditioning not asthma.

None of the preventative or combined preventative inhalers have ever taken the symptoms away. She coughs regardless.

The preventative ones should reduce the number of episodes of coughing (if cough variant asthma). If they’re not doing that you may need a higher dose. The fact you said she uses her blue inhaler far too much indicates her asthma is poorly controlled. In terms of coughing and then using the blue inhaler it’s function is mostly to keep you from getting worse so it can then subside. They’re not instant fixes. You will still cough during an attack for quite some time.

What antihistamine does she take? If it's OTC she might be able to have a stronger one on prescription.

I also have questionably cough variant asthma. I got moved up and up the scale until I eventually went on holiday and it just stopped. I assumed it meant it would come back when I came back home but it never did. I gave up taking my inhaler (and get told off by the asthma nurse, but given I don't really need it I'm not just taking it for the sake of it). I'm not sure what help that is, and the asthma nurse says "well you still have asthma" but I guess it was to maybe give you some hope that it might not be forever.

My DD is 12.

Her asthma started at around 3/4 though and was always a night time cough.

The GP was skeptical about it being asthma though, but I pushed at the time as it could tell it was.

When she started on seretide is was better for a while but then flared up at night again a few years ago. I think it is triggered by allergies as I hear her making a throat clearing noise that I make when I need an antihistamine ( and unfortunately I need to take 4 antihistamines a day, so it looks like she has inherited my genes there 🙈)

I read that montelukast helps with allergies which was another reason we decided to try it in the end. If she forgets to take it then it flares up and she coughs all night straight away, it’s a really noticeable difference.

My GP said Montelukast is one of the safest drugs you can give. My chest consultant says he doesn't think it does much good. Take your pick!

Both DS consultants have said it’s the kind of drug that either helps or it doesn’t. There isn’t much of a middle ground like you get with many.

ds has been on it for 10 years and with the rest of his cocktail it seems to help. His coughing is certainly a lot worse when we trial him off it!

Sorry for delayed reply - re reading your post I fear you’ll already have tried the magic bullet that worked for us as it’s just another inhaler: seretide (the purple one that combines Salmeterol & Fluticasone Propionate - not available on the nhs where we live at least).

@Breadandbutterandjam Is that what you were prescribed after the private consultation? Did that inhaler work after trying others? There seems to be so little published research on cough variant asthma.

So far she has had Flutiform (fluticasone and formoterol) and now has Fostair (beclometasone and formoterol)

@Augend23 Which antihistamines are given on prescription?

@EndlessMagpies What are they looking for with an xray?

Those whose teenagers tried montelukast - did they have no adverse reactions? No nightmares or vivid dreams even? How quickly do you know it has worked if it works?

Oh - she has tried a prescribed nasal antihistamine.

I don’t don’t to scare monger but as you asked- sadly my DD was one that had horrible side effects and she had a terrible couple of years before we realised the potential links and that it all started when she starting taking it and so she stopped taking it with very quick positive bounce back.
I hesitate as I appreciate it is life changing for some but it can have serious side effects.
I hope it works out for you

I don't know that we will try it. I appreciate it is the miracle pill for many but the inner leaflet of side effects stats does make scary reading. More so than other medications.