Help and advice needed for son

[Aslan139]

My son is nearly 11 and I’m writing to see if anyone might have had similar issues to him and for advice. Both my husband and I are really concerned about him.

My son was hospitalised twice aged 5 with classic asthma symptoms (wheezing, unable to breathe) and has taken a preventer inhaler since. Now, his asthma only presents as a cough. For the past 3-4 winters, he has had a cough from early November onwards - as soon as the weather turns cold. Last winter, his cough lasted for five months and we were unable to find any treatment that helped (he was given anti-allergy meds, Seretide combination inhaler, Montelukast). It cleared up when the warmer weather arrived and we have been really consistent with his preventer inhaler since (despite zero symptoms between March-Nov).

This year, when his cough started again in early Nov, we were put back on to these same meds (Seretide and Montelukast) for four weeks which made no difference at all. We also encouraged him to wear a face mask in the cold and tried a humidifier (which occasionally seemed to help). We saw the asthma specialist GP last week and he escalated my son’s treatment by doubling the Seretide and prescribing 6 puffs of Salbutamol every four hours. We finally saw some impact and for two days we saw a big improvement for 1-2hrs after each dose of Salbutamol. Then, a couple of days in, the Salbutamol just stopped having any effect at all. Has anyone experienced this?

GP has now prescribed a 3-5 day course of Prednisolone and we are at the end of day 2. The cough is worse than ever and we are at a loss as to why the Salbutamol would work for a couple of days (indicating asthma and that asthma meds were helping) and now neither that or the Prednisolone seem to be helping.

We will, of course, continue to take the oral steroids over the coming days, but I wondered if anyone had any thoughts as to why the Salbutamol might work for just a couple of days and then stop? (I should say it stopped working before he started the Prednisolone). And, also, if anyone has had success treating a chronic cough with oral steroids?

It is awful to see our son constantly coughing for weeks and months on end, and the exhaustion that comes with it.

Any advice would be really welcome - many thanks.

[Sunflower36]

It truly is frustrating to see someone cough and exhaust themselves while you are helpless too. I have not had that kind of cough affect me so much but I was living with a friend in such a situation. Salbutamol helped her too at first but later she got so sick she tried so many cough meds but was not getting better. Her cough lasted almost a year and you can't imagine how frustrating that was for us who were taking care of her and had nothing to do to help. Later on she was given Fostair inhaler to take everyday with a reliever inhaler and she swears by it. She told me it took a while to work but when it did, it helped her tremendously. Hope your son gets better soon.

[Aslan139 in reply to Sunflower36]

Thank you so much for your kind words. You’re right, it is really debilitating for the person going through it, and hard to see for those who live with them. It’s really heartening to know that your friend finally found something which worked for them. Our GP has spoke about changing his preventer inhaler if the oral steroids don’t work (or don’t stop the cough returning) so I will mention Fostair to him. Many thanks

[twinkly29]

What preventer is he on when not on seretide (assuming I'm right in reading that the seretide was restarted in November)? Preventer medication can take up to 8 weeks to be fully effective so in those first four weeks it probably wouldn't have been working probably. It's promising that increasing the dose helped a little but, again, it will take a few weeks to become effective at the higher dose. It would make more sense to me that he stayed on the same inhaler all year, possibly reducing the dose from the spring when he is ok (with GP guidance) but then increasing it will in advance of his usual time of year when it flares up.

It's worth discussing other preventers definitely but anything new or additional won't work quickly.

[Aslan139 in reply to twinkly29]

Thanks so much for your reply. Yes you’re right - Seretide was started again in early November. He was on Clenil 50 from March-Oct - which I don’t think is a very high dosage? He has no symptoms at all during spring and summer, and then, like clockwork as soon as the weather dips, the cough starts.

I think that’s good advice to increase well before the onset of symptoms - so, if we can get it under control this year and then come off Seretide in the spring/summer, we could then go back on to it in early Sept each year. I hadn’t heard that it can take up to 8 weeks for preventers to take effect, I had always been working on 4 weeks - so that’s helpful to know.

Do people tend to stay on the same inhaler all year round even if it’s seasonal? It seems like a lot to give him Seretide throughout the year when he is okay on the Clenil during spring/summer. Or is it that he will cope better in winter if he has a higher dose throughout the year?

Thanks again - really appreciate it.

[twinkly29 in reply to Aslan139]

Different meds take different amounts of time so it might not be 8 weeks for Seretide but they can often take the 6-8 weeks.

To me, it would make sense to stay on the seretide all year, perhaps reducing the dose in spring but increasing say at the start of September. But many people on preventers keep the same dose all year - although it would be worth seeing what the GP or asthma nurse thinks due to having no symptoms for those months.

[Aslan139 in reply to twinkly29]

Thanks very much - that's really helpful.

[Hidden]

If you use salbutamol too much, the body gets used to it and it becomes less effective. It’s supposed to be there to save your life, much like an epipen. Saying that, it’s not likely to happen over just a few days. I coughed constantly in cold weather (and sometimes struggled to breathe at all if I went directly from a warm house into the cold) until my corticosteroid dosage was increased. Now I have no issue and cough rarely.

[Aslan139 in reply to Hidden]

Thanks very much for this - I think the change of temp can affect my son too. When you say you increased your corticosteroid dosage, was it an inhaler or oral steroids, or a combination of both which helped? Was there anything else that helped to stop your coughing? Prevention or help once it started?

Helpful to know that Salbutamol can get less effective over time too - as that is what we are finding.

Thanks again for your reply - I’m really grateful.

[Hidden]

Nothing else worked. Salbutamol would help short term, but 20 mins and I’d be coughing pretty much uncontrollably again. It’s an inhaled steroid that I take daily. Mine is called Relvar, but there are quite a few and seretide is pretty much the same thing. I very rarely need salbutamol now. Perhaps once a month or even less sometimes.

Asthma is a real pain to get to grips with. Problem is that there are so many variables and a lack of real knowledge from many GPs and nurses. Too many just don’t take it seriously, so you need to keep at them and I’d suggest asking to see a respiratory specialist if it remains uncontrolled for such a long time.

[Aslan139]

Thank you FatherJack, that's helpful to know. I am hoping that if the oral steroid can clear the cough, his Seretide can then maintain that improvement. I'm pleased to hear that you've managed to get your asthma cough under control so well.

I think you're right that many don't take it very seriously. It was a relief to see the asthma specialist GP the other week who seemed to be much more clued up as to what to do/try. Before that, we were planning to find a specialist. I think when you say it's a cough, people don't seem to take it very seriously - but it was so exhausting and so debilitating for him when he coughed all day and late into the evening for five months solid last year.

Thanks again.

[Hidden]

So long as you keep at them, he’ll get the right treatment eventually. I think a lot of people just accept the GP’s opinion without question, but we live in an age where we can fact check everything now. I hope he gets sorted ASAP. I know exactly what he’s going through, as do so many others on this forum. He’s lucky to have a parent who fights his corner!

[Aslan139 in reply to Hidden]

Thank you - we will keep trying to resolve it and hope that we find the right treatment over the coming days and weeks.

[ChrissieMons]

I don't know if this is much help, but my daughter had a cough for two years which the consultant said was asthma. Eventually, she grew out of it. I know it is hugely worrying when your children are ill, but unfortunately most medications are trial and error. I'm sure you and he will get the right help, but it may take a weary while.

[Aslan139 in reply to ChrissieMons]

Thanks for this - what age was your daughter when she grew out of it? I know lots can change as they get bigger. It does feel a bit like trial and error, and hopefully we will find the right treatment for him this year.

[Mickeyboy2020]

Hi I’m Mike I’m 62 and I am a severe asthmatic for many years now and I’ve had most drugs to sort me out. Sorry to hear your son has problems but seeing as he is so young he will probably grow out of it. I had asthma when I was born and it disappeared when I was 7, they say it goes in 7 year cycles and in my case it reappeared when I was around 42 If you are in doubt get a second opinion from another doctor or get him referred to The Brompton Hospital, these people are probably the best in the country and maybe the world, people come from all over to get treated

I’m not saying the doctors in your local gps are bad or in the local hospitals but the people that know best are in the Brompton

Get yourselves referred by your gp and I’m sure it will help him

Wish you all well 👍🏻

[EmmaF91 Community Ambassador in reply to Mickeyboy2020]

Just be warned every one gets different experiences at specialist hosps. I’m glad you had a good experience with your asthma team there. And children’s asthma clinics can be a completely different experience to an adult asthma clinic. That being said I’ve heard relatively good things about the kids asthma clinic at Brompton. But also heard the same at other tertiary centres around the country.

Aslan139 is your son under a local hospital? If not it may be worth asking for a referral there

[Aslan139]

Thanks Mike and Emma. We would look to move from our GP if he’s not able to resolve the issue, but at the moment I do have confidence in him.

As an update, the GP continued with the higher dose of Seretide, but also suggested we try a nasal steroid spray to rule out post-nasal drip. About two and a half weeks after the increased Seretide (2xpuffs twice a day, as opposed to the 1xpuff twice a day he was on in Nov) and one week after using the nasal steroid spray, our son has started to make gradual improvements with his cough.

He is significantly better in the day time (except for on initial rising), even when exposed to cold air which we think is his trigger. He still coughs quite a lot from about 4pm onwards and it’s worse as he lies down at night. We are debating whether it is the increased Seretide or the nasal steroid spray which has made the difference. We think the former, especially as we have never seen any evidence of mucus - it’s always a dry cough.

I don’t think he was put on the right dose of Seretide for his age (11 years) at beginning of Nov so he spent four weeks without Seretide having any effect.

As the medication seems to have had some impact but not completely resolved the issue, would the next step be to increase the dosage again?

Thanks all for your help. We are so relieved that something seems to be working for him; the cough is still very much there, but not as debilitating as it was.

[twinkly29 in reply to Aslan139]

I'm glad things are on the up. It could be a combination of those things and also that beginning of November to now is a couple of months - by when the original Seretide dose should be fully effective. 4 weeks after starting it it wouldn't have been. So extra time to kick in, a stronger dose and the nasal spray may all be playing a part.

With post nasal drip, it doesn't cause mucus really, it's the fine secretions irritating the airways that causes the cough. I think! So it wouldn't necessarily be a productive cough with that.

But glad things have improved - hope he gets a period of more stability now!

[Aslan139]

Just an update on this and a quick question. I spoke to my son’s GP on Monday and, although we’ve seen some improvement on Seretide, we are pretty much at the limit in terms of dosage and it certainly hasn’t got rid of the cough.

GP therefore recommended a change to a new preventer inhaler (and to stay on the nasal steroid spray).

So my son started Flutiform on Monday night. Unfortunately, he has been a lot worse the past 2-3 days and any improvement we had seen on Seretide has now disappeared.

Is this normal whilst the new inhaler is building up? The GP said he didn’t think Flutiform should make the cough worse, but it does seem to have.

Should we continue for the requisite 4-8 weeks to see if it makes an overall improvement, or revert back to Seretide and the small improvement we saw on that?

Any advice would be really appreciated - thanks.

[EmmaF91 Community Ambassador in reply to Aslan139]

In asthma, meds can be very personal, and what works for one may not work for others. It can take up to 8 weeks for an inhaler to fully kick in but if you’re finding it’s making him cough and triggering issues (not too unusual if you have an inhaler you don’t get on with), then I would go back sooner. Something to think about is asking if he might be better on powdered inhalers, just in case it’s the propellant that’s irritating him.

For more about inhalers in general; healthunlocked.com/asthmauk...

Hope this helps

[Aslan139 in reply to EmmaF91]

Thanks so much Emma. I think we will maybe give it another week and see where we are. I've just been looking at powdered inhalers - I presume you can get the exact same treatments in a powdered form or are there only certain medications that can come as a powdered inhaler?

[EmmaF91 Community Ambassador in reply to Aslan139]

A lot of inhalers come in both spray and powder form. Some only do 1 or the other. I’m not sure if there are different age limits or not but most inhalers come in an alternate form.

[Bluelady-sing]

I have been coughing ti I wonder if it was covid your poor son, I hope he gets better and grows out of Asthma

[Aslan139 in reply to Bluelady-sing]

Many thanks for your kind words - yes, we have to keep telling people that it is asthma and not Covid. We are hoping he grows out of it over the coming years as he gets bigger.