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.

That doesn’t sound normal OP so you’re right to push for tests. My eldest had it at 4 months and whooping cough, but didn’t get it again. The only other child I know who has had it and she had it multiple times was my god-daughters child. She suffered brain damage at birth and was on life support for some time so this was likely the cause. She’s 5 now and in school and hasn’t had it for some time now, so she’s definitely getting stronger bless her.

@lostinsouth
thank you, it really is so hard and draining being on constant edge all the time and heartbreaking seeing our boy keep going through this.

In just really hope we can find something that helps him and prevents it getting to the stage of hospitalisation. Kind of feel like we always just get fobbed off with the same answers at the moment.

@CaptainCabinetsTrappedInCabinets where did you see that please? When I looked online it said it was £1450!!

This doesn’t sound normal to
mr and I would absolutely push for more tests. Is your ds developing normally elsewhere? It is probably just bad luck but I would definitely want this investigated

@Pilotingmyownlife sorry to hear you and your child has been through that, may I ask how long it took them to diagnose those things?

@Chopbob
interesting you say that about your old house, we currently live in a older house and its a little village with lots of farm land around so we did wonder if all the farming stuff in the air might cause issues, we did previously have some damp issues in our living room but got that sorted. Will defo mention it when we see the respiratory specialist though just incase.

Dc was nearly 2 by the time they diagnosed. I actually cried with relief (the not knowing is worse than knowing as we then had a plan). I think the consultant started taking it seriously at 18 months.

@KidsDr thank you for your detailed response really appreciate it.

we defo will raise those questions when we have our appointment. I just feel like there must be something they can do to help prevent things from getting worse each time he gets poorly. He’s not been right since April, it’s something making him poorly nearly every week. Just can’t cope with it anymore.

I'd ask if it's possible for him to go on prophylactic antibiotics until Spring/ Summer. That's the o lying thing that worked for ds. Went on at 6 months and it solved the issue. Came off recently and he was bad with tonsillitis, cough, bad chest etc until ended up in hospital on IV antibiotics. I've pushed for prophylactic antibiotics again and it's helped.
If no, I'd ask for an emergency pack of antibiotics, given in powder form you can make up yourself at the first wheeze.

@Stanleycupsarecool so sorry to hear your daughter has been poorly and in hospital so much.

no we’ve never been given the brown inhaler, only ever the blue one with a big spacer thing.

they did try a different one called Atrovent as well as Salbutamol 33 puffs back to back mixing between them both and it made no difference. Was absolutely awful seeing my son being put through that for it to make no difference.

I wonder if we will be offered the brown inhaler going forward.

In 2001 my ds had it for 10 months on and off. Hospital stays of 10 day periods. They were worried about long term damage. Ds now 23. Did 4 years in the army. Fit as a bloody fiddle..

@FeedingThem they always say though that because it’s viral bronch antibiotics won’t help, yet when ever we get discharged they always give us some as well as oral steroids. I will defo mention this option on our appointment next month though, I’m willing to try anything to help our boy.
im so glad it’s worked for your son :)

@Grapewrath yes he seems to be fine in everything else and I have double checked this on several times at the hospital as I was worried with him being so regularly poorly that it might effect his development

Different situation as dd was very premature and as a result had chronic lung disease. We were VERY well known to the children's ward and spent at least a day or two, sometimes a week or more, there most autumn/ winter months with bronchiolitis for her first three winter seasons.

That was despite having the RSV vaccinations, which she was eligible for on the NHS. They had to be given exactly every 28 days for (I think) three or four months. I'm guessing the £200 a previous poster quoted was for each of those, so £800. But factor in inflation (dd is now 9) and it could be well over a grand...and yet still not make much difference.

@Zanatdy so sorry to hear that about your god daughters child that must of been awful. But glad to hear she is better now though.

It's good they are investigating to see if there is an underlying cause. If there is this will lead to specific treatments and if there isn't it's likely he'll grow out of it.

We had exactly same with dd2. She was 4 weeks with the first episode, had to be resuscitated in the ambulance went to HDU on a vent for 5 days. She had recurring episodes and hospital stays from then until 6 months when we started weaning and discovered she had tonnes of allergies (previously reacting through breast milk). She started long term antihistamine and inhalers clenil and salbutamol. This and removing allergy foods improved situation but we were still in ambulance/hospital every couple of months. Eventually we were given rescue dose of steroids to administer at home until we could see GP instead of constant ambulance calls. When she was 4.5 and had outgrown all allergies we were referred to ENT who diagnosed her with sleep apnea as a result of poor breathing, asthma and on going infections. They ordered a scope procedure under general anaesthetic to see if her windpipe was too narrow. They decided while under GA to remove tonsils and adenoids as they were taking up over 50% of her free airway. That was a year ago. We have not been in an ambulance or hospital since! She sleeps all night has grown and gained weight. She will always have asthma and need inhalers but she is a different child. Good luck x

@Anxiousmummy2023 our experiences are ages old as ds is now 29. However, he had a nasty bout of RSV related bronchiolitis aged 4 months and was in hospital for a week. He was discharged with blue and white inhalers I think atrovent (reliever) and salbutamol (preventor). They were given via a huge spacer and I was told to puff and count to 10.

He coughed and wheezed and got quite poorly every time he had a cold until he was about 14/15 months. The inhaler was ramped to a nebuliser and three/four times we went to A&E and they sent us home with oral steroids. Twice the GP rolled their eyes in horror. It went on and on and came to a head at an appointment when the Registrar didn't bother looking up when we arrived and merely barked "you all turn up late and now you are all here at once". I am afraid I walked out and demanded an appointment with the consultant and then went straight to the GP and had him referred to the Brompton Hospital and a wonderful specialist paediatric chest consultant there.

He reassured us in relation to underlying issues, arranged an immediate session with a specialist asthma nurse and switched him to pulmicort and ventilation, advising that the nebuliser shoukd never again be needed. He also prescribed a turbocharger which was about a quarter size of the spacer but not then available on the NHS. It was £25. It was so much easier to use. Add to that the nurse's advice. "Oh it's not about counting tonten per puff, it's counting 10 breaths. If you are just counting to 10 it's no good, look at him holding his breath Most of the meds go in on the first two to three breaths". Also much easier to use the turbohaler as one could hold the baby in one arm and get the turbohaler over their mouth with the other.

Seeing an expert privately was worth it's weight in gold, notwithstanding getting some good advice about giving the meds.

He didn't look back. He had mild asthma until he was about 7/8 and it lifted when he went to prep school which was on the top of a hill and further from a river.

It was a terrible time op and I gave up work when he was 15 months to get him put of nursery and because I was so continuously unreliable. It is in the dim and distant past now and by 7 he was playing tag rugby and by 13/14 playing front row for school and the juniors of a London club. All turned out well.

I do think a bit of specialist, private advice may be helpful if you can afford it.

Wishing him better.

Ventolin not ventilation!