Asthma - ineffective reliever medication

[jennys79]

I am after some advice about my DS (8) asthma. He has been on a preventer inhaler since the age of 2. His current medication is as follows:
2 * 2 puffs of Symbicort 100/6
Bricanyl or salbutamol as his reliever (depending on scenario)
Cetirizine (antihistamine)

Daniels asthma symptoms are mainly a dry repetitive cough. And more recently a chest pain, that he describes as being like ?bricks on his chest?.
He misses a lot of school as his cough can sometimes be so bad that it lasts for days, and at its worst he cannot talk, vomits and can burst little blood vessels in his face from the strain of coughing.
He recently trialled singulair, but we did not see any improvement.

My issue is this??. We feel (and have always felt) that the blue reliever offers NO relief of his symptoms. This week, for example, DS missed 2 days at school due to his chest pain. We were told by doctor to take 10puffs of salbutamol via spacer, one puff at a time, spread out over about 10 mins. These puffs did not help him at all. In addition we also gave 2 puffs of atrovent. This also didn?t help. We reported this back to the doctor. Eventually the chest pain went away by itself, but DS had a very uncomfortable 3 days waiting for the symptoms to ?go? by themselves.
Does anyone else have a child where salbutamol is not effective? If so, what medication is your child on?

I feel as though we have no effective medication to help relieve his symptoms. Apart from resorting to prednisolone tablets.

DS has had many tests done recently by paediatrician. He was tested for all sorts of conditions including Cystic Fibrosis, all of which were negative. We came full circle in the diagnosis and were told that ?Yes? he does have asthma, mainly due to a slight improvement in his PF test at hospital after being giving salbutamol.

Normally my DS peak flow is well above average, but it can drop to 50% of normal reading when his symptoms are bad.

We have now been effectively ?signed of? by the paediatrician. So it is now a case of visiting the doctors / OOH when he is particularly bad. Otherwise we just have to ?ride it out? with reliever medication that doesn?t help.
We are completely frustrated and feel helpless. We dread the sound of his cough, which tends to build up gradually over a few days. His symptoms are worse in the winter, but can also be poorly in the spring / summer.

Just wondering if this sounds familiar to anyone else?
Any thoughts would be appreciated.

I also have 2 other children who have asthma, but much more mildly than DS1.

Thanks in advance
Jenny

Get a second, third or more Opinion. Your Doc and pedi are not qualified enough.

Your DS should have Not been signed off. and he should be seeing a Asthma Specialist.

jenny79 mine are on Seritide 50 and blue sabutomol when needed ...generally when feeling a bit run down/cold/sniffles sort of thing.

Not an expert on the diff meds as we are doing ok on this but does your surgery not have specilist asthma nurse ????

You should not have to be doing this yourself.

DD is like your DS. What preventer is he on? DD's lung function is 130% of what it should be when she is well, she is an athlete which keeps her lung capacity high. We know that when her LF dips below 80% of normal it may not be a big dip for others but for her it is huge. This has finally been acknowledged and she now carries a letter from her consultant which lays out a treatment plan should she need to rock up at a hospital that is not our local, we've had problems in the past as she can appear OK but isn't if that makes sense. She gets chest pain too.

We struggled for all of her childhood to get her a decent asthma treatment regime. Like your DS she does respond to salbutamol in tests but not well enough to feel the benefit, she doesn't feel it benefits her at all when she is struggling to breathe. When she needs nebulising it is the atrovent and salbutamol used together that help her, just plain old salbutamol does very little to reieve her symptoms indeed. She has brittle, hard to treat asthma. Her consultant now has her on Fostair on a Symbicort SMART regime, this regime basically means her Fostair inhaler is her preventer and her reliever whereas most people would only use it as a preventer. Symbicort did not suit her but Fostair does, she always, always used a spacer device and has recently had her Qvar dosage upped as well. Since being on this regime with increased Qvar and Montelukast (she now takes montelukast morning and night) she has been well.

We had to get DD under the respiratory consultants as her asthma nurse at the GP practise was out of her depth as DD's asthma is so tricky.

I'm not sure the Symbicort SMART regime is used in under 18's but I think there may be a similar regime that is.

Thanks everyone for your replies.

bizzey - Our practice asthma nurse is useless. I think I know more about asthma than her! Our GP is fantastic, but I think is as confused as we are......

hellhasnofurylikeahungrywoman - Thanks for taking the time to write such a long reply. You are the first person I have spoken to where salbutamol has also not worked.

DS uses Symbicort as his preventer, and we were told to use his normal relievers alongside it as he is too young for the SMART regime. He was previously on QVAR and was swapped across to Symbicort last year.

I have just looked on some peak flow charts. DS normal peak flow is at almost 200% of his expected rate. I think this could be because DS is very small for his age (on 0.4th centile). Makes it awkward when we ask for help.... we turned up at A&E the other week with chest pain, coughing and PF at 50% of his normal, we almost got laughed at.

Can I ask, does your DD have an asthma attack, in the sense of shortness of breath & drawing in of ribs, etc.. ? Or is it the coughing and chest pain? Also, does your DD wheeze?

DS symptoms normally build up over a few days, and can sometimes linger for weeks. Does this happen to your DD? Or do her symptoms come on quickly? (Is this what Brittle means?)

One more thing, does DD have a oxygen thing attached to her finger to measure her oxygen levels when she seeks help? DS always shows as 99%, even when he feels (and looks) really ill.

I am going to email our paedtrician and see if we can be referred to a respiratory consultant.

Sorry about all the questions. But am really keen to speak to someone in the same boat.

Thanks
Jenny

Hi Jenny,
Am a nurse and have asthma, does your lo respond to steroids?
Has he had nebulised salbutamol?
Would second the poster who recommended referral to a respiratory consultant.
Could you video her when she is at her worst to bring with you.

I have a couple of 'asthma' patients that have cough not responding to SABA/LABA and it has been found to be due to GORD (gastro-oesophageal reflux disease).

Given that your son's main symptom has been cough without wheeze and it is largely unresponsive to SABAs I would be asking for a referral to a paediatric respiratory physician and if necessary a paed that specialises in GORD if not already investigated.

A SMART regime isn't licensed in under 18s and Fostair isn't licensed for that use either, but of course a consultant paed can do what they like .

Dd seldom wheezes but she does have decreased breath sounds, usually in her left lung. Coughing and chest pain are her main symptoms, her breathing becomes very rapid. Onset can be anything from a few hours to days. She knows now that using a nebuliser early on can prevent her being bad for days on end. When she was young she would spend 2 weeks well, 2 weeks worsening, a trip to A&E because she could barely string a sentence together then 5-7 days on prednislone tablets. Now, as an adult, if we can't nip an episode in the bud it takes 2 weeks of steroids at 40mg then a further 8 days decreasing the dose to get it under control.

Do you keep a diar of his readings? My DD is also small but my understandng is that this means their peak flows should be lower than the norm for their age. Is he sporty or does he play a brass or wind instrument?

Dd has good O2 levels when poorly provided she is sitting or lying while on the monitor but when she walks about it drops into the low 90s.

I also have a DS, his asthma was very similar to DD's but he grew out of it as a teen. He did some lung function tests recently which showed he is still asthmatic but he hasn't used inhalers for about 5 years now.

DD has only recently had her condition confirmed as asthma, she has always been treated as an asthmatic but her symptoms have never been typical. She is now classed as an a-typical, difficult to treat, asthmatic.

I agree with what's been said about consultant respiratory paeds, they were able to treat my kids with regimes no-one else could. My two were some of the first children to use montelukast and Flixotide before they were licenced for children..

Thanks everyone for your messages again. I have just written a letter to our paedtrician asking for a refferal to a respiratory consultant.

hellhasnofurylikeahungrywoman My DS sounds very similar to how your DD did as we have a "cycle of illness" especially during winter time, where he seems to be well for only a short amount of time.

We do keep a diary of his peak flow and how he feels, and take this with us whenever we visit GP / hospital.

Thanks again for giving me the confidence to press forwards with asking for a refferal.

I'll let you know how we get on.

Jenny

Good luck jenny