Bronchiolitis 6x why is this happening ?

[Anxiousmummy2023]

Hi all,

new to mumsnet so I have no idea on abbreviations lol so please bare with me. I’m just really hoping someone has any tips or advice as I’m literally so close to a mental/emotional breakdown at this point.

my son (who is nearly 18 months old) has had Bronchiolitis 6x since April this year and each time he’s hospitalised. The first time he got in in April we was in hospital for 12 days and he ended up on HDU with optiflow and a feeding tube, spent his first birthday in hospital, was the worst 12 days of my life. He had antibiotics just it was bacterial and then when he was discharged he was out for 10 days then ended back in again. This has been ongoing since then, each time he gets a cold or run down, it turns into bronch and ends up in hospital. If he’s not in hospital I’m taking him to the doctors.

as it’s been ongoing for so long I’ve requested to see a respiratory specialist which we are due to see next month, he’s had blood tests to see if he has any immune deficiencies but they came back fine, he’s also booked in for a sweat test to check for cystic fibrosis end of this month.

the doctors at the hospital just say he’s unlucky, but I just can’t accept that. No child should be getting this poorly and needing hospital treatment every month. I’m a nervous wreck every time he starts to get a cough because I know it’s going to turn into something worse.

inhalers don’t help, we have tried several times and the doctors listen to his chest after and they make no difference and have said they don’t think he has asthma as he always gets a high temp when ever he gets bronch.

injust need reassurance I’m doing everything I can to help my son? Last time he ended up in hospital was 2 weeks ago for 4 days, he was fine for 2 weeks, goes back to nursery and now his cough has come back. Am I doing this to him by sending him nursery? I just don’t know what to do anymore. Feel so helpless and stressed out and anxious every single day.

My son -40 years ago-had obstructive bronchiolitis at 12 months. He was hospitalised many times. Turned out he was born with underdeveloped lungs ( pulmonary hyperplasia) which we didn't know about until he was 12. Could it be this?

My eldest was like this. The first two years of her life we felt like we were spending most of it in hospital. They didn’t know why, just some children are more susceptible than others. She did grow out of it but it’s bloody hard when they’re so little and so poorly.

@ClemmyTine I’m sorry to hear your son was poorly and hospitalised when he was younger, how did you find out it was that? Would they pick it up from a X-ray?
also thank you so much for responding to my post x

@Deadhouseplant oh no sorry to hear you went through this too, did she end up getting asthma when she was older? Or did they help her with anything to prevent it from getting bad to the point of being hospitalised?

Been there, it is shit. My youngest got it at 5 weeks old and has been prone ever since (nearly 2 now) and has been admitted 3x in the last 6 weeks.

Every time she gets a runny nose or a cough I can feel my body go on high alert. Her sibling can get the same virus and be completely fine.

It's exhausting and so stressful and your nerves just get completely shot.

But there's nothing you've done wrong, or have caused this. You're doing the right thing by pushing to be seen by a resp specialist, they'll be able to make an action plan for him.

It's shit that inhalers don't help at all, we've found relief with them, they also don't think it's asthma but it does help to open her airway. We've just started a daily preventer in the hopes that as it's a continuous low dose of steroid it should help that the next time she gets a virus she hopefully won't need admitting and having to go on oxygen etc. Has your doctor said anything about trialling that? Do steroids and nebulisers help in the hospital?

Our drs have said that once they get it badly it sort of messes their lungs up for a while, and they need a good chunk of time to recover as they become sensitised. But if they're getting viruses all the time they don't get a chance.

We're trying to increase her immunity through diet but she's quite picky and that tanks whenever she's sick, so also giving supplements.

Not a lot of advice I'm sorry, but a lot of solidarity. It's really fucking hard and you feel like you can't help them. But you're doing everything you can by advocating for him, and taking him for treatment whenever he needs it, that's really all you can do.

Everyone keeps telling me the first year of nursery is the worst for bugs and then they stop getting sick so much. That's what I'm holding on to at the moment 🤞

They put her on inhalers but I’m not sure it helped. We still ended up in hospital. My other child never had bronchiolitis and they shared a bedroom. We used to dread winters.

@addler

im so sorry to hear your little girl has suffered with it and been in hospital recently :(
it’s absolutely heartbreaking isn’t it, feeling so helpless and being a mum I feel like I should be able to make my own son better and I can’t.

nebulisers also don’t work, they have tried several times and it just makes him irritated and heart rate sky rocket even more. Steroids have helped, they gave us some to continue when we last left hospital. I’ve had to argue with doctors at the hospital last time because they wanted to try the inhaler several times even though they said the first time they tried it makes no difference so it’s been difficult feeling like the doctors don’t listen.

any tips on what’s helped your daughter at home?
we have tried propping her cot mattress up and a cool mist humidifier but made no difference.
I just want to try and prevent him from ending up in hospital every time because it really effects me mentally being in that place.

we are trying Sambucol for his immune system so hoping that works, if you haven’t already tried that one for your little girl it might help?

thank you for responding to my post with positive words, I really appreciate it and it’s nice to know I’m not alone in this, all my friends haven’t gone through this so I always felt like I was doing something wrong.

My youngest was the same, A&E gave us dexamethasone liquid to give the moment symptoms started, usually in the early hours. Starting treatment quickly really helped.

He's 13 now, and has moderate asthma, which is well controlled.

@lunar1 I don’t know if we’ve ever been offered that? Is that something you can ask for do you think?
I’ve spoke to our doctors to see if my son could have the RSV vaccine to help prevent him getting so poorly and they said no, so I just want anything that might help prevent him getting to the stage of needing to end up in hospital.

Dc2 had a similar start in life. I can certainly emphasise with the viscous circle.
Sweat test was negative. Bloods were negative. Had bronchoscopy with washout several times which helped.
Was eventually diagnosed with bronchomalasia, tracheobronchomalasia and chronic bronchitis.
Thing that helped most were having daily intravenous antibiotics via a picc line for a month aged 2, and was then on continuous low dose oral antibiotics till age 8. Now mid teens has developed asthma (not uncommon I was told with early childhood chest issues) but otherwise chest wise is really well.

So sorry you're having such a worrying time OP.
I could've written this exact post about my ds. Every time he caught a cold he ended up admitted to hospital with Bronchiolitis. This was many, many times until he was about 3 yrs old.

This may not be at all relevant in your case, but all of my DS symptoms stopped abruptly when we moved house when he was 3. Our old property was a very old grade 2 listed cottage that was built in 1600s with single brick walls and no wall cavity (and so had a damp problem- not terrible damp, but a still a problem). We then moved to a new build after this, so no damp.

The hospital specialist suspected the recurrent chest issues were linked to the damp and the related mould, but didnt make the link until after we had moved.
My DS never had an issue with his chest again.

This may be of absolutely no relevance to your DC though! But just a thought.

Really sorry you are going through this.

It's more common than not to have no response to bronchodilators (inhalers like salbutamol) under 18 months old as the airways are not very muscular yet (so the cause of difficulty in breathing is narrowing secondary to swelling and excess mucous and not bronchospasm (which is construction of the airway muscles) that can be relieved by a bronchodilator) and also because the receptors they act upon literally aren't yet present in the airways.

Saline nebulisers can help as they loosen mucous allowing it to be coughed up.

Some babies become susceptible to repeated episodes of bronchiolitis following a severe episode particularly if it occured very early in infancy. There are also rare progressive inflammatory conditions of the airways that can develop with repeated viral infections.

The only thing you can modify are: please don't smoke, please avoid contact with smokers and their stuff. Make sure there isn't black mould at home. I can't think of much else for you to do and there is probably absolutely nothing you could have done to prevent / improve this situation short of being luckier.

I think it is a really good idea to see a respiratory specialist and also to exclude CF. I am not an expert so I can't advise you but if it was my baby I would want to ask the specialist:

• Is there a role for steroids longer term or at the onset of viral symptoms
• Does baby need a high resolution CT chest to look for underlying causes

It may be too early for either of the above. For a lot of children as they get physically bigger they literally ougrow the potential for their airways to be severely restricted by swelling and mucous (brought on by viruses).

Some children do then additionally develop bronchospasm which produces similar symptoms - they are said to have viral induced wheeze. That can be easier to manage though as it does respond to bronchodilators. Others don't ever develop bronchospasm, outgrow it and no longer become unwell. 18 months - 2 years is usually when these two groups separate out.

Children who have episodes of viral induced wheeze often then outgrown the tendency for the bronchospasm associated with viral infections between about 2- 4 years old. But those who continue to develop bronchospasm are labelled as childhood asthma. But there's a bit of overlap.

Just additionally there is some emerging evidence (though mostly in adults) about nasal sprays and their potential to reduce susceptibility to viral respiratory infections / viral load.

I don't know a lot about this but again if it were my child I'd be looking to explore every option so it is potentially worth visiting a pharmacist to see if there are any safe OTC options for children and what they would recommend (if anything).

It’s common to have recurrent bronchitis once they have had it once and it’s nothing you are doing wrong. Keep an eye out for pneumonia too.
It gets much easier when they are old enough to talk about it.
There are lots of different medications that the consultant will probably work their way through.
Physiotherapy can also help, as can saline rinses.

Oh your poor little boy. My daughter had it when she was 13 months and needed oxygen and antibiotics. She had a cannula in her foot and was in hospital for about a week. It’s left her having asthma though as she’s gotten older it’s not been needed as much. Having it 6 times it’s just extremely bad luck, and tbh I would want investigations as to why it’s happening too

I could have written this post myself. DD is 19 months and was admitted 7 times between February and April this year. She was in for 5 days last October with RSV which seemed to kick it off. They also said she has been unlucky and we have had a sweat test as well. You said they have tried inhalers, have they tried the brown preventer inhaler? They gave my daughter once in April and she hasn’t been admitted since.

She is under a respiratory consultant, although we haven’t seen her in ages.

Have you tried some sort of immunity stimulating therapies? I've heard some people say that Broncho Vaxom (or similar) worked for them/their kids so maybe look into that. Not sure how widely available it's in the UK though.

Op you can get The RSV vaccine privately for about 200 quid

I'm sorry this happening. Its so stressfil when little ones are hospitalised.

I could have wrMy son is 5 now but had a series of hospitalisations/trips to A and E between 9 weeks and 1 year (and then lockdown happened) for a combination of bronchiolitis, croup and RSV. This was mostly over the spring/summer. He was tricky as looked quite well even when he was quite ill.

You've done exactly the right thing asking for a referral. He was investigated for tracheomalsia and he was diagnosed with "pre-school wheeze" - treated with a combination of inhalers and montelukast under consultant care. Eventually he grew out of it and we were discharged from hospital. We do still need to be very vigilant when he picks up a cough - we missed a chest infection that turned into pneumonia earlier this year because he still doesn't present as ill as he is but day to day he's generally fine now. I did find I had to be quite assertive with the GPs given his history.

Hope that you get some reassurance from your appointment.

Exactly the same experience for us, and our daughter is 10 years old now and so much better! Things probably improved from around the age of 4. She was ultimately treated as asthmatic by the Respiratory Consultant and we found a huge improvement with her reaction to viral infections once she started Montelukast in additional to Clenil and Salbutamol inhalers. Prior to that every single cold resulted in a stay on the children's ward and sometimes high dependency, it was relentless - we knew all the ward staff by name! Yet younger brother never suffered at all, just the usual colds but no chest / respiratory problems until he turned 7 and then developed a night time wheeze and now also has inhalers! Always at the chemist collecting repeat prescriptions, but their quality of life and ours as a family is so much better now they're not poorly all the time and we're not living under the constant anxiety and crippling tiredness that we survived through when my daughter was younger.

I would have thought a dehumidifier when healthy would be better? No damp stale air. Open windows every morning. My dehumidifier has a uv/plasma/carbon filter thing with says it removed bacteria and allergens from the air.

Humidifier when chest is bad to ease breathing.

Which sort of inhalers has he had? DD was given a steroid inhaler (Clenil Modulite) to use twice a day as a preventative as she had recurrent Bronchiolitis with high temp and that worked absolutely brilliantly but it takes a few months- not the same as the ones used for an acute asthma attack eg Salbutamol. She has a Salbutamol as well but never uses it, she’s not wheezy or breathless, she just used to get ill all the time and now she doesn’t. Two puffs twice a day prevents her getting ill like she did.

@Cobblersorchard they have only ever tried him on Salbutamol one and then this other one called Antrovent, they did 33 puffs back to back and it made no difference one of the times he was in. :( how old was your DD when they gave the steroid inhaler?

@FlingThatCarrot
we found when using the one we had it made his room smell like damp in the mornings and there was all condensation on the windows so we stopped using it with worrying it wasn’t good if it was creating a damp smell for his breathing.

@PlugUgly1980 how did you find the strength to keep pushing through it until she was 4? I don’t feel like I can keep doing this for much longer, I was really hoping he would be one that grew out of it but it doesn’t look like that’s going to happen any time soon. His cough already sounds like he’s getting wheezy, so depending on how his night goes looks like I’ll be taking him back to the hospital. We were only there 2 weeks ago :(