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Confusing advice from consultant

Bettynano profile image
22 Replies

I had a terrible experience today. My son's asthma consultant became annoyed at me and my husband because we chose to homeschool our five year old, largely because of his asthma. He gets three to four days of constant coughing when it flares and he was like this at least twice a month. We think viruses triggered it, but afterwards the cold air and exercise also triggered his symptom. The cough is dry, when coughing like this he doesn't talk, like he hasn't go enough breath to talk. It's non stop. When it happens we give regular blue inhaler, according to the action plan. Today though the consultant told us not to give ventolin. He said ONLY give ventolin if we hear a wheeze. He said the ventolin wouldn't help with the cough. I'm now quite confused. We've always given ventolin too at the start of a cold. The consultant also refused to agree that the cough was asthma. I said when he has a wet cough it's fine, we know the difference. The consultant said only use blue for bronchospasm and that's only a wheeze! Please does anyone have any advice or response to this? It's not the home schooling issue, it's the consultant's confusing advice regarding what ventolin is used for.

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Bettynano
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22 Replies
Homely2 profile image
Homely2Administrator

Ring the asthma UK helpline and talk to a specialist nurse there to help build your knowledge up.

Write notes during the conversation and read them back to the nurse at the end.

I often find an asthma nurse more practical and capable of explaining than the consultant.

Also, if your gp practice has an asthma nurse you might find that helpful if you can get on the nurses list. Ring the gp reception and ask about it.

Troilus profile image
Troilus

I think the question is, does the blue inhaler stop the cough? I sometimes get a dry cough and a puff of the blue inhaler stops it. If I don’t use the blue inhaler I can’t get rid of it. Also, I am not a wheezer, even in a full blown ‘I’m in big trouble’ kind of attack.

Bettynano profile image
Bettynano in reply to Troilus

Many thanks for your reply. It's actually hard to know if it helps. The cough seems to come on strong, very frequent. We follow the action plan and give four puffs on blue every four hours. The cough doesn't seem to go. Not even sure it subsides at all. The coughing lasts about three to four days, then sort of stops, almost suddenly. After that he has cold like symptoms, snotty nose etc. He's often left with sensitive airways though and coughs when running or out in the cold. These exacerbations were happening frequently from October to December, with other things, so we took him out of school. Since then he's had a couple of colds but it's not lead to the bad, non stop dry cough.

Troilus profile image
Troilus in reply to Bettynano

It might be an idea to go and see your little ones GP and let him/her know what is going on. Chances are the consultant is going to write to him anyway.

I know that there are add on medications for adults, but not sure about little ones - the only one that comes to mind is Montelukast.

I’m thinking that a chat with the GP now might be a bit more informative/productive than when your little on is in a crisis and the GP focus is on treating that. You might just be able to work out between you the best way to avoid it.

It’s all so difficult because little ones aren’t able to communicate effectively what is going on!

Leith24 profile image
Leith24 in reply to Bettynano

Dear Bettynano,

Have you looked at all at his diet? I find (and so do ENT consultants) that silent acid reflux can cause a dry cough for me. It irritates the mucous membranes. When I have a bad bout of silent reflux, I have a cough and then a day or so later get a very dribbly nose and swollen sinuses that looks to others like a cold but I don't feel ill like with a bug. Does it occur after eating certain foods, like chocolate, spicy food, minty things, tomatoey foods? Or eating close to bedtime (should be at least 2 hours after eating before laying down to sleep). Those are my main triggers. It might be worth exploring and if so, asking GP about an alginate (e.g. gaviscon advance) to help.

MMBJI profile image
MMBJI

Hi, so frustrating when the people who are meant to be helping you are unhelpful!

Myself and 3 children don’t wheeze, unless we have full blown chest infections.

For my 3 children a cough is their asthma symptom.

We’ve all been treated for asthma since early childhood (under 1 or 2 years old.)

I am nearly 50 and still have to explain that I don’t wheeze. Some professionals understand, some don’t.

I agree with Troilus, if the blue helps, use it.

Also, we shielded for 14 months during the pandemic and withdrew our children from school. I home educated them for 18 months and they went back to school ahead in their studies (they were struggling when they were in school pre-pandemic.)

Bettynano profile image
Bettynano in reply to MMBJI

Thanks for your reply and sharing your story, hope your children are faring better. Could I ask if their cough is dry sounding? And, how long exacerbations last? What treatment, if any, helped with their cough?

ReedB profile image
ReedB

I agree with the others. If the blue helps, use it. I'd be looking to have a second opinion and a change of consultant. I've had a few consultants/doctors over the years some are brilliant but some left me thinking I didn't have asthma which resulted in serious breathing difficulties. All because I don't wheeze!

Rachiejo87 profile image
Rachiejo87

Morning,

I'm so glad you only wrote this 14hours ago cause I might be able to offer some advice.

My son is exactly the same and we were given steroids for him.

Nip in to see your GP. With all that coughing they will be able to hear in the moment if there is a wheeze. BUT AS NOTED ABOVE, many do not wheeze including myself. You are well within your rights to ask if he can be looked at and assessed properly for the use of both a brown and blue inhaler.

Yes!! There is a difference between the coughs. Now, when my sons cough goes from a wet chesty cough to almost a screech or yelp "ish" I know thats when he needs additional help. As with your child, my sons triggers are colds etc. I go through a routine so to speak. I prop his mattress up in bed, vicks on his chest and feet, "cool mister machine on so the plume is over him" and blue inhaler. If this doesnt work (as happened with him only a couple of weeks ago) I take him to the docs. After the first dose of steroids he had, the cough stopped within the hour.

My sons "asthma cough" was so bad his teacher offered him a cup of water as it was relentless to the point where he started to heave.

Dry persistent screechy cough.

He ended up attending the GPs 3 times that week.. asthma issue and severe chest infection. Now I think had he not been battling with a cold for 3 weeks or so his asthma wouldn't have flared.

You are the parent and will notice these subtle changes.

Sadly I was in a coma for 10 days that nearly killed me in 2017 due to respiratory failure from an asthma attack. I didn't know I had asthma, I was a smoker and had been carrying on as best I could for weeks with a chest infection. These things can be prevented. Steroids are so so simple. I know my surgery know THAT I KNOW as an asthmatic, when my son turns down the "asthma attack" road. Attacks are mostly slow burning, and give PLENTY of warning so as to administer your reliever.

I cannot reiterate enough "go to your GP and have them see him WHENEVER you are concerned". Keep returning again and again.

I take 4 medications daily for my asthma. Montelukast changed my life. Gamechangers, but you just have to be heard.

Keep pushing for your child to be seen.

Please please don't hesitate to get in touch even if just for a chat.

This is just advice from my own perspective being a severe asthmatic myself and with my son being an asthmatic.

Rachel

TheWelshWriter profile image
TheWelshWriter

I think the home schooling is a good idea. That way you can control the environment and have more control of the asthma. I am also more of a cougher, less of a wheezer. Does your son have a preventor inhaler? I know that fairly recently, for symbicort some GPS and consultants say to use symbicort for symprom relief rather than the rescue inhaler. Did they say to do this or to use nothing if he is coughing?

It's tricky because we would expect a consultant to have the best knowledge and advice but now you are left feeling doubtful.

As someone above said, I recommend you either speak with an asthma nurse or asthma uk. They will be able to properly advise you.

He's your child and you know his asthma better than anyone. I'd feel the same way as you.

Bettynano profile image
Bettynano in reply to TheWelshWriter

Thanks so much. Yes, he has seretide.

SilverWillow profile image
SilverWillow

I think talking to Asthma UK would be a good idea. I’m wondering if your child could have Cough Variant Asthma? I was diagnosed with CVA in my early 60s but I find that many doctors and even asthma nurses seem to have very little knowledge of CVA.

I don’t wheeze although if my asthma is bad I can actually hear my lungs crackle. I have a blue inhaler and do use it sometimes. It helps but doesn’t stop my coughing completely.

I had a bad time earlier last month. I went for 1.5 hour walk through woods. The next day my eyes were itchy and my asthma cough was dreadful - could barely talk. I knew I was allergic to birch pollen but it was too early in the year for that. Got my doctors to test me and it turns out I am now allergic to hazel, willow, oak etc as well as birch. Lots of catkins around by me.

So, could your child be allergic to tree pollens if his asthma came on after being outside? Apparently only 5% allergies are tree pollens but I’m certainly one of 5%.

AJP2 profile image
AJP2

Sorry to hear about your experience. Its very worrying that an asthma consultant would say only give Ventolin if there's a wheeze especially when your son gets to the point he can't talk. Clearly you have given Ventolin when your son has been coughing, if you've found its helped then you've proven the consultant wrong. I agree with all the comments above, seek advice from GP, asthma nurse, asthma UK but also consider requesting a second opinion from another consultant and raising a complaint about the first consultant (through PALS at the hospital where your son was seen) as his attitude could prevent non wheezy asthmatics getting the care they need.

Neither my daughter nor myself wheeze except on rare occasions and usually then when things are improving. I always find myself pointing out to doctors/nurses that we are not wheezy asthmatics and generally they do accept that.

Have you tried to see if your son can do his peak flow? He's quite young but if he can manage it then you can keep a diary which may be helpful. That's how my daughter was diagnosed but she was older. If he can do this try and get him to do readings before and 15mins after he needs his Ventolin

Good luck

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Hi Bettynano, I agree with all the advice above - especially about ringing the helpline. 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm

Unfortunately, the completely wrong idea that bronchospasm and wheeze are exactly the same thing is still floating around, and being pushed by people who should know better - including respiratory specialists! I'm sure you know this but in case it helps to be reminded after this consultant has made you doubt what you know: bronchospasm is the airway narrowing. Wheeze is a possible, and common, sign of that narrowing (but not the only one - see also cough, shortness of breath, chest tightness).

The 'all asthma wheezes' view often seems to go with a lack of awareness of coughing as an asthma symptom (and like you say, it is a distinctive dry cough.) I've been literally told by one respiratory registrar that I made up no wheeze asthma (he also told me that the worse your asthma, the louder the wheeze. That is literally not true, particularly since when airways become very narrow they just don't make any noise at all because air can't move through them.) Another respiratory registrar asked me if I took cough syrup for my cough. I said, as politely as possible, that I found Ventolin and other asthma treatments worked a lot better.

When I was a child my parents were told that a cough especially at night time is particularly common for children with asthma. And that means that yes, the blue inhaler can help the asthma cough - clearly you already know that it won't help all coughs, and this consultant sounds like he just doesn't think patients/parents know anything.

But then not all wheezes are asthma, and people can have an asthma wheeze that is not audible to the average person listening (some wheezes are only really audible to a stethoscope - is the consultant expecting you to haul your son to the doctor every time he might need Ventolin? Not that that would help either, because as many others have also said and should be better known by doctors, not all asthma wheezes!)

I would also agree with contacting PALS, once you have some better information on how to help your son. This is a really dangerous attitude for the consultant to have, and other parents might not be so clued up on what to do.

daleboy3 profile image
daleboy3

Hello I have had asthma since 1963 so I know a lot of information, has your son had the seratide inhaler it’s pink in colour it contains two chemicals Ventolin & a steroid this inhaler controls my lungs when taken after

1 puff of ventolin using a spacer which holds back the large drops of spray but allowing the fine mist to enter the lungs 🫁 then two shots of the Seratide inhaler if you have not been introduced to the Seratide contact a asthma Nurse or specialist to obtain one you have the right to request this enormously valuable part of your sons Asthma controlling medication don’t let anyone fob you off as my life changed for the better with both sprays also when your son has time between Asthma attacks try to get him to sing a little to exercise his lungs a few minutes every day I was able to form a pop band in the 70s & became the lead singer so anything is possible if you put your minds to it if you require any more information let me know regards

Daleboy333

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to daleboy3

Hi Daleboy, I appreciate you're trying to help and Seretide has helped you, but it's best to avoid recommending that people ask for specific inhalers. People with asthma respond differently to different treatments, so Seretide may not work as well for everyone else (and there may be a different approach needed for a young child). I agree that some kind of preventer might be worth asking about in this case though.

Chip_y2kuk profile image
Chip_y2kuk

That's utter rubbish.... drives me mad when supposed professionals come out with unfounded drivel like this and shows how they haven't kept up with CPD (and in my opinion should he struck from the medical profession before they do some damage, but that's a different argument)

There is a whole sub type of asthma google "cough variant asthma" the main symptom is the mother of all coughs

I actually found out about 9 months ago I don't have asthma and have been misdiagnosed 35 years ago as a baby I am on more stuff now than when they thought I had asthma .... and yes I have a blue inhaler to help with coughing

You can't overdose on ventolin,yes if you take alot your heart rate increases and it can make you temporarily dizzy... if your giving it and it works go for it if you give it and it doesn't work then you've "wasted" a few puffs of an inhaler... there are worse things that could happen

Also a "consultant" should know that the airway inflammation causes mucus (the body's way of washing away irritants) and in asthma your airways narrow and your lungs will Try and clear that mucus (made more difficult by the narrowing) .. which in itself will cause a terrible cough (hacking cough) as the airways and lungs constrict to move the mucus somewhere it can be coughed clear

Bettynano profile image
Bettynano in reply to Chip_y2kuk

Thanks for your reply. Yes, I felt like I was "driven mad" too. I forgot to mention he has seretide as his preventor inhaler. I've read loads about asthma, and yes, I understood his dry cough to be a symptom that there was airway inflammation. To be honest the ventolin only seems to help since he's been homeschooled. Before Christmas when he was having these exacerbations frequently the ventolin didn't appear to do much and we couldn't prevent three days of coughing. We still used the ventolin though and then the cough seemed to stop, almost suddenly. I would have liked the consultant to talk to us, explain things, not just shout at us! He was extremely unprofessional I thought.

Maltesemama profile image
Maltesemama

Golly Bettynano, you are getting a lot of different advice from your doc. No wonder you are confused. I am not a Doc, but if it were my child (and I was one like your boy, pre ventolin days) I would use it as necessary, not more than 4-5 x a day. Make sure you are using it correctly. It doesn’t hurt to refresh yourself by watching the how to video.

Don’t blame you for home schooling since he has so many triggers.

Good luck, and a second opinion wouldn’t hurt.

Bettynano profile image
Bettynano in reply to Maltesemama

Thanks, I know!

Mandevilla profile image
Mandevilla

What business is it of the consultant how you choose to educate your child? He's supposed to help with health issues, not education!!!

That aside, I'd suggest ringing the helpline - they are great and so reassuring.

Also, in my experience, I've got far more help from the practice nurse at my local surgery than anyone else. The higher up the 'tree' you go, the less help you seem to get!

Chip_y2kuk profile image
Chip_y2kuk in reply to Mandevilla

Got to say I got to the severe asthma clinic and they where/are amazing.... even though they told me I probably didn't have asthma they where also the only ones that could tell me what I had

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