Our daughter is 23 months and has been in and out of hospital with Bronchiolitis and viral wheeze since she was 11 months - usually she needs a couple of nights on oxygen before she’s sent home, we’ve been blue lighted in once.
She was in with pneumonia in early September, and has been ill again twice since (every three weeks), but we’ve managed to keep her out of hospital by using salbutamol at home (4-6 puffs every 4 hours) .
She’s been ill now for 8 days will a cough, fever and wheeze. She’s been on the salbutamol for all of this time, though we are trying to wean her off it so she’s only had it at morning and before bed since yesterday. She’s been given penicillin by the GP for a suspected chest infection and tonsillitis, we’re on day 4 but not noticed much improvement.
I’m concerned about her having this much salbutamol, it’s a long time a fairly high dose - but I can’t find any info about whether it’s ok. (We have a steroid inhaler but are waiting until she’s better to start it)
Also would really appreciate any advice about treatments. The asthma nurse wouldn’t take her on as she’s too young, but we can’t get a referral to any other specialists. Found a good post on here about private physio which we will try. Would consider seeing a private specialist but don’t know where to start. Know that she will just get sick a lot over the winter, but want to make sure we’re doing the right things.
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southoftheriver1
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Were you advised to wait to try the steroid inhaler? Blue inhalers temporarily open the airways. Steroid inhalers reduce inflammation in the lungs and in my experience we have been advised to use it regularly and to increase it when the kids are unwell.
Usually an asthma nurse would try to make sure you use steroid inhalers or other preventative medication regularly to reduce the need for the blue inhaler.
It is worrying when they are so small. I think the key is to try and use preventative medication regularly so that a virus doesn't cause them to become so ill.
Have you been advised to wait til she's better to start the new inhaler? It will take about 8 weeks to become fully effective so, personally, I'd just get going with it especially as it might begin to help quicker - bit obviously don't know what you've been advised.
In case a ray of hope helps, a friend's son was similar and when he started a steroid inhaler it sorted things hugely for him. No more hosp trips and rarely asthma issues either.
The antibiotics might take a few days to start working but do get in touch with your GP tomorrow - and if it's viral then the illnesses will have to run their course anyway.
But I hope she begins to improve soon and you all get a break - it's good to build immune systems when they're little but there's also a limit to how much you can all deal with!
Just seconding what has already been said. The blue inhaler will only to help to alleviate symptoms for 4 hours. The steroid inhaler will address the underlying cause.Unless you have been told otherwise ai would get your little one started on it ASAP
Agree with this, too. Good idea to start the steroids.Surprised to hear about the asthma nurse too. I had remembered that referral / service as being there for any child based on number of times they had been acutely unwell, not age. Ie. Open to anyone receiving care from the respiratory team.
On the important clinical points - ie. medication / changes in / side effects caused by etc - I find it’s the respiratory consultant who sets all the major courses.The asthma nurse reminds us to follow the asthma plan, listens and comes up with practical ideas when a child is unwell or says eg. if they think they need to come in for A&E, but as far as long term solutions go, for us that has been part of the role of the consultant to decide: eg. New medications and when to start / stop, sleep study, tonsillectomy etc.
Have they looked at any other possible triggers? For my daughter it was always viruses and this time of year. Does your daughter have an older brother / sister at nursery or school? And has she had the flu jab?
Have you ever called Asthma U.K.? They have asthma nurses. Once you are under care of hospital asthma nurse, you can speak to them, but until then, try A U.K.. I’ve found them really helpful in the past.
The process for referral to asthma nurses / respiratory consultants is meant to be kick-started by a given number of A&E visits (3, from memory).
In our case it didn’t happen and my daughter’s GP (the only good one in the GP practice on asthma, and who we discovered on day 5 of 5 consecutive visits to see a GP re: her uncontrolled symptoms) was outraged that the hospital hadn’t kickstarted the process of referral - it’s harder to do from the community (GP), unlike other referrals. And chased it for about 2 months. Once you are in that system, you are in a much better place.
Does anyone here have a link to the relevant NICE guidelines? If not, suggest you Google them.
Re: tonsilitis, the threshold for removing them is lower if / when they are a major trigger for viral wheeze. So do ask to be referred to ENT, too, if she has a lot of infections.
I’ve found with breathing problems and very young children that you have to cause a real fuss to get anywhere. Except with the experts, who get it straight away.
You can also buy the flu jab privately. I’ve done that from Superdrug when the GP was being c-r-a-p about prioritising my daughter before. My daughter has been admitted to hospital twice if not three times when she has had flu before. Of all the viruses, it seems to be the one that is the most dangerous to her health.
Agree completely with everything that has been said, unless indicated otherwise I would start the preventor straightaway! At the minute the salbutamol is acting as a sticking plaster and untill the root of the inflammation is treated, the salbutomal won't last.
I know you are trying to avoid hospital, but if the salbutomal isn't lasting more than 4 hours it may be for the best as they can get the inflammation under control more quickly. At the very least I would get advise from your g.p, as it sounds more likely viral if you haven't seen improvement with the antibiotics.
I can understand your frustration at not being referred, however small children's lungs are very narrow and floppy which means any slight inflammation will cause quite a significant narrowing. This is why most drs are reluctant to refer as most children's lungs improve as they get older although doesn't help you right now!
Most asthmatics find they need a preventor inhaler to keep their asthma in check, so hopefully after a few weeks of taking it you will see a massive improvement. It must be so hard to see your daughter so unwell, but fingers crossed with the right meds things improve!
Thanks for all the replies. We had been due to start the steroids just before she got ill again and the doctor suggested we don’t add a new medication until she is better - but I can see that might not make sense. We’ve been seen twice this week by the GP, once to A&E and been assessed by 111. The problem this week is we’re over the threshold for the GP but she’s not poorly enough for A&E. She seems a bit better today so we’ll call the GP about starting the steroids.
Totally understand about the asthma nurse, she was really helpful when we met her and advised we were seen by a different lung specialist but they haven’t responded to the referral. Just keep being told the regularity and severity at her age is concerning but then not being picked up.
Well! I don’t quite know what to say as I don’t understand your GP’s reasoning. Maybe he is wanting to see how the antibiotics work, incase the steroid inhaler is not necessary? This is something I would seek clarification on when you speak to him.Secondly, I wouldn’t worry about your little one not being ill enough for A&E. Ours is full of people who have drunk too much! So, I am sure they would excuse a visit from a worried mum with a sick baby. If A&E is the only route open to you, then use it.
Thanks - we have been down to A&E loads, but they send us home if her saturation is over 92%, and we don’t get any other advice. So we’re often caught in a gap where the GP says she’s too sick for them but she’s not at the threshold to see a consultant at the hospital - although we have had six 2-3 night stays on oxygen. And yes, I’ll ask about why we’ve held off the steroids.
I don’t know of any long term effects of salbutamol but I do know that the salbutamol weaning plans say to follow the symptoms, not the plan. So if your daughter is still coughing a lot, don’t wean her off the salbutamol. My daughter has been like yours since 8 weeks old, on-off, and is now on steroids but she was not so long ago in A&E with viral wheeze. They want to know if the symptoms haven’t gone by day 5 or 6, and they want you to keep the day 5 or 6 doses going until the symptoms go, or at least that is what our teaching hospital tells us.
Sending you a big virtual hug, too. This is just the worst - these early months of exacerbations and not knowing and them not able to explain the severity of symptoms etc. One last thing - with all the good will in the world - it is only an exceptional GP who has been on all the recent asthma training courses, too, who really gets asthma / bronchiolitis - diagnoses, treats and understands - in the way hospital doctors and asthma nurses do. Even A&E nurses quite often misread the signs. On three separate times, A&E nurses have encouraged me to take my daughter home as they thought she was OK, missing the signs of either uncontrolled wheeze or chest infections. The same has happened with GPs several times - they haven’t picked up on the severity of symptoms and my daughter has been too young to describe them. So now when the A&E nurse suggests I could take my daughter home - at 2 am, when I am really not attending A&E for fun! - I always wait until she’s seen a doctor, when they generally tell us she needs to stay / another intervention.
And please do call Asthma U.K. and check what they think about starting steroids and about your daughter’s broader needs and plan, please!
Thank you - and sorry you’ve had the same problems. How old is she now? Would be great to know if there are interventions you’ve been offered other than salbutamol and oxygen, feels like we might need to start asking.
Another part of the problem is that we’ve seen her so unwell that we’ve also overlooked the small signs, as the GP showed us how tiny the chest sucking in can be.
My daughter is 5 now. She hasn’t grown out of it yet, but the steroids control the wheeze so much.
I really recommend you start your daughter on steroids. As everyone has said.
We have twice (am sure every parent has a similar story, but I don’t feel proud repeating it) had short stints when we have taken out eye off the ball (once we skipped a few doses of the steroids over a few weeks by accident and once the brown puffer had run out of doses and we hadn’t noticed, for too long) and episodes of wheeze returned, as before.
There is some talk of the brown inhaler mildly stunting growth in children, but the effect is very mild from what I’ve read. I also think my daughter might have slightly darker body hair now, but having been through the alternative that also seems OK.
Also, my daughter was trialled on a drug called Montelukast. It’s highly effective in those it works for, but in a relatively large number of cases (1 out of 8, as I recall) it leads to a nasty side effect of extreme night terrors. My daughter had that side effect, so we stopped it after just a couple of months. That was an instance where the asthma nurses didn’t seem concerned about the side effect but the respiratory consultant took it very seriously and told us to stop it straight away.
We have an oximeter, which as everyone with asthma will tell you here is no good for assessing asthma but it has been good at assessing chest infections in our case. And in my daughter’s case - frequent viral wheeze - it has actually been accurate at pick in up the dips in her health.
Agree re: small signs. Number of breaths / minute, noisy breathing, going off food, heart rate going up (also some thing an oximeter is useful for) temperature, chest sucking in (agree it’s hard to read until very obvious and too late)’arching back and opening mouth in sleep almost as it gulping air … it’s a balance of all these and more. My daughter also falls out of bed a lot - we (her doc and I) now think connected to adenoids that mean she doesn’t breathe as well in her sleep.
Now my daughter is a bit older, I realise that frequent cough in and of itself is really worrying and maybe for her the first and most reliable sign. When she was little I thought that was “just” a cough. But now I know a cough for her is different than for us.
As paramedics will tell you, you must never ever wait for a child to turn blue before acting, that’s really a sign that comes too late but it is nevertheless one of the symptoms they always list.
I can’t express how useful all of this is. It’s all the stuff we’ve been trying to piece together! Thanks so much for taking the time to post. I’m sorry you’ve had to go through it all too. Really helps us to make sense of what to do next, and how to have a bit more confidence identifying what’s going on.
I just thought I would add that my son was similar to your daughter. He was on 10 puffs of ventolin every 2 hours at 1 point. He was given steroid inhalers and monteleukast from the age of 2 to 4.5 years. Once he was on the preventative medication he hardly used the blue inhaler, only when he had a virus and it was much smaller doses.
From the age of 5 he has been pretty much medication free. He has a blue inhaler that he uses when he gets a virus but that is all. They can grow out of it or at least improve with age.
I also took my son to an indoor salt cave and it cleared his chest out.
We went to the salt cave twice. I was happy to try anything at that point. He had food, skin and asthma allergies which may be why he benefited from it.
He coughed a lot the first time we went but it was a productive cough which got rid of his permanent wheeze. The second time I took him as his wheeze came back after a virus and again he had a productive cough which cleared it all out.
I'm not sure if it was the antihistamine effect or just enough irritation to make him cough deeper but it made a difference to him.
Thanks for sharing this , so reassuring and really glad for you he improved. I’d heard of salt caves before too but not considered it fit this so really good to know.
Thanks everyone. This has honestly been so helpful for me and my husband, and I think we have a good plan for the week now we know a bit more about what/who to ask for. Definitely prioritising preventer meds! Very grateful for the time you took to respond.
Agree with everything said previously. If any help (maybe not) my daughter was very similar in and out of hospital higher doses of all meds for her age from 19 months. Under specialist teams asthma, food allergies, petit mal, dermatologist etc and still would get some medics say "too young to have asthma diagnosis" fast forward she's now 19 it's all well controlled except virus season as to be expected. Not needed a neb since little (touch wood).
My son he's 3.5 similar, diagnosed asthma at 8 months by respiratory consultant been on montelukast, preventative, ventolin since. Well controlled until Sept this year bad bout of recurring croup, then this awful viral pneumonia in hospital 6 times in a month. And still questioned who diagnosed his asthma as he's very young .
And I have great pleasure in stating the paediatric respiratory allergy consultant! I'm almost thinking to go back on montelukast we agreed to stop due to night terrors.
But at the time he was well controlled when he wasn't montelukast worked brilliant until side affects out weighed.
I absolutely wouldn't wait to start preventative unless like twinkly29 stated there is an actual reason as it's that, that will make a change more so to ventolin.
It's so scary with a little one throw in a temp too and your all over the place. Have they done the throat swab? My son was first diagnosed with tonsillitis had amoxicillin still spiking 40.C after completed course wasn't until they did covid pcr they also check HPMV and rsv with same swab came back positive for viral pneumonia, which mimics covid and is what a lot of people actually have not tonsillitis not all but a lot. It was discovered in 2001.x
I don't normally recommend buying nebs without it being prescribed but I have literally just done this. I am in no means recommending anyone else doing this I am a nurse and have made an informed decision and discussed it. The distress it was causing my little one keep going in to hospital being told he's classed as an urgent but ambulance would be hours away then get there and que an hour out the door in middle of night in rain an cold have got a baby/ childrens silent one. But always discuss with your health professional first and should still be seen and gp notified of neb use. X
Sorry to jump in here but I’m really quite surprised your GP has said that they’ll prescribe the nebules.
In most hospitals the guidelines for treating viral wheeze say that children only need nebulised salbutamol if their saturations are low and they need oxygen. Otherwise they should be treated with an inhaler through a spacer and a salbutamol weaning plan.
If a child is needing nebs then they really ought to be in a&e or hospital where they can be safely monitored
You might not be but please don't rely on an oxygen sats probe meaning things are "ok". Sats in asthma are notoriously unreliable (all sorts can affect the reading from the probe itself to temp of finger and more) and good sats do not mean everything is ok. The body can easily compensate and be crashing but still maintaining sats - children are better at this than adults too and can go downhill incredibly quickly.
Thanks for your message abc I’m really sorry to hear you’ve had a rough time with your daughter, having to wait around with no beds is really frustrating. Mine has been on a nebuliser but when her oxygen has been in the 80’s so she’s needed it with oxygen - she responds to the inhaler at other times (tho not until she was about 20 months old). From what I understand they don’t diagnose asthma until 5 but the risk factors can mean you’re put on an asthma plan earlier (e.g. steroids).
Hope you get the support you need - some really useful advice on this thread
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