21 month old repeated hospitalisation on oxygen

[HenSolo]

Hi there

Just looking for people who have been through similar really with any advice. Since Xmas last year (yay) and apart from a four month gap over the summer ds2 has been admitted to hospital 6 times with breathing trouble and chest infections. Most times he ends up on oxygen (optiflow) which he then struggles to come off and we end up admitted for about two weeks. Husband has had to take weeks off work to look after our other ds (we have no family help nearby) and it’s getting ridiculous. No real diagnosis except viral induced wheeze but they are always saying when they listen to his chest that the wheeze is very slight so I can’t see that that is the real problem!
He has preventer inhaler and ventolin as well as prophylactic antibiotics and I’m going to ask to try montelukast once we are out (we are in hospital atm). I keep seeing kids come in with breathing trouble but they never have to stay as long, usually only one night. Docs really don’t want to investigate and just say he will grow out of it but we can’t live like this! He has had endless blood tests and chest X-rays. Any thoughts??

Has he been checked for aspiration? I'm guessing they should have ruled that out already.

Has he seen respiratory specialist ?
How is his development otherwise?

We had simular with ds. Every cold would go to his chest. He would recover from the infection but would continue to need the oxygen for ages, extending the hospital stay.

We had a sleep study done and it was found he has some obstructive breathing which was causing the longer dependency to oxygen. He was diagnosed with sleep apnea. He now has oxygen support at home so if he does get ill we can care for him at home.

It was wrongly concluded that the reason for the chest infections was he was aspirating, but turns out he has a rare syndrome which causes a susceptibility. So for us the antibiotics have stopped repeated infections and the oxygen at home have stopped the need for hospital stays when he is ill.

I would think next steps for you are swallow study and sleep study because you need to know why he keeps getting chest infections and why he needs the oxygen support for so long.

@paradyning never heard of aspiration! I’ll ask tomorrow

@cestlavielife he’s under the care of a consultant paediatrician who happens to specialise in respiratory care but she has very much adopted a wait and see approach. She was considering referring us to a specialist department in another hospital after last winter but decided against it as apparently it’s hard to get referred. I think I might try and go this route myself once we are out of hospital. She seemed to think that there wouldn’t be much more they would do but I’d like to know for sure!
His development otherwise is good, healthy weight and height. Meeting milestones a little late e.g bum shuffled and only started walking at 18 months.

Hmm ds is now 23 5 admissions in his first year after bronchiolitis. Lots of contradictory advice. Consultant not particularly helpful either although her advice was only ever vicarious. I ended up giving up work.

Put foot down with gp and insisted on private referral to another consultant at West Brompton. Two apts and one session with asthma nurse for good an accurate advice re inhalers. Ruled out any lung or respiratory dysfunction or underlying infection.

Other nurses had said puff and count to ten. Had not said many babies hd theor breath. Furnished with small turbohaler and right advice mega improvement and off nebuliser immediately. Never had another hosp admission.

What's the pollution level like where you live? High levels of pollution can be linked to respiratory problems.

Otherwise, I think I'd keep pushing for them to look into it. Sounds horrible. I hope you get to the bottom of it.

@Onlyhappywhenitrains1 this is interesting and very useful. He does sleep badly in general so I wonder....thank you, it is also good to know I’m not the only one!

@Ontheroses West Brompton is where we were talking about being referred! I will definitely put my foot down now that I feel a bit more confident that this has happened to other people. Thank you so much

@Minimonkeysmum yes very high pollution where we are. Thank you for your kind words I will keep pushing!

Surprised to get any responses tbh thought it was a bit too niche so pleasantly surprised thank you!!

Oh and if it's any consolation Hensolo he was completely clear of all asthma wheeziness by age 7 and endedbplaying front row for a significant local rugby club! 6ft and v powerful.

Haha @ohtheroses that is v reassuring!

If there's high pollution it could definitely be making it worse (or possibly causing it).

Could you look into an air purifier? They can help removing pollutants from the air inside. The which? Best Buy ones aren't cheap, but the cheapest of the Best Buy options is the Vax AC02AMV1, which is around £250, but can get a refurbished one on eBay for £130. Good luck!

@HenSolo I completely understand where you are coming from. My son is 13months and has been admitted to hospital 5 times in 12 weeks. We are due to see a consultant in two weeks who will hopefully rule he's asthmatic and we will get the inhalers he needs.

Have you trialled any steroid inhalers? Is there a history of asthma? What is your child's behaviour like? Is he energetic?

I spoke to a doctor last week in hospital who asked me similar questions and given my answers said it's extremely likely he's asthmatic.

Keep pushing your doctors and search for a second opinion if needed. You know your child and although they have a medical degree you know ultimately what's best 

Onlyhappy - what was the syndrome do you mind me asking?

Op - consider if enlarged adenoids/tonsils might be making things worse. They can cause sleep apnea. My lo’s Adenoids used to enlarge every cold leading to breathing problems. The breathing problems were always much worse at night.

My other child had asthma - if the wheeze is really bad and hardly any air getting through they’ll often tell you there is only a little wheeze. The wheeze gets bigger once the air flow gets better. Always try the inhalers to see if there’s any improvement even if they don’t hear wheeze - ime if a child has known wheeze.

Get referred to a respiratory consultant

@MummyG7 yes they keeps mentioning asthma but not confirming as he’s too young apparently. But he has been on steroid inhalers for months. I guess I’m wondering why what would probably be a common cold for another child always turns into a serious chest infection. Does asthma do that? I’m sure I must have asked one of the many many doctors this at some point but they are good at avoiding straight answers with me!

I am pushing to be referred now for sure

@Yellowsunredroses thank you for the info re: asthma, I didn’t know about the wheeze strength/weakness. I will ask about adenoids as well.

@HenSolo I have always been 'fobbed off' when I've asked doctors. I read an article that said a few years ago doctors were diagnosing asthma too quickly so I wonder if that's the reason. It's so frustrating because it's really starting to affect my sons development. I hope you get some answers soon.

My dd was like this at a young age. She was admitted every single month, was on copious amounts of meds including daily oral steroids as a maintenance therapy. Eventually we were referred to the Brompton and it changed our lives. We’d been told all along it was asthma, but she wasn’t responding to conventional asthma treatment. The Brompton did a sleep study and found she had a weak diaphragm and disordered breathing. She also had weak muscles in her throat. So overall, she wasn’t getting enough oxygen into her lungs through lack of muscle control. She was also aspirating due to this too.
I really recommend the Brompton. They really did help save my little girl.
Good luck

@Flossie44 fantastic thank you. I do really feel like all the asthma meds in the world aren’t making a dent and it also pisses me off that they make it feel like asking for a referral is just the most inconvenient thing on the world but come on he’s spent almost 2 months in hospital in less than a year.

Thank you for your story, it helps

Sometimes you can slightly be aspirating with all fluid / food that you consume, which builds up and will eventually turn into a chest infection and Low oxygen

sorry to hijack the thread...

Im wondering when you talk about breathing difficulty, what you mean?

DS had bronchiolitis a year ago, and now has a slight wheeze with every virus - occasionally turning into secondary bacterial infection, though not always.

Aside from the wheeze (musical, very slight, not constant) - he's fine - if slightly breathless first thing.

We have a blue inhaler which I give as and when - nursery say they never need it - which doesnt make a huge difference...

I havent been overly worried about this - but this thread makes me think a slight wheeze is actually q serious - unless I'm misunderstanding?

TIA

Sorry - that wasn't very clear?!
I think I'm asking - when your poor kids end up in hospital - what's the threshold/ trigger for admittance?

Rapid breathing
Constant crying that can’t be consoled
Using all the tummy muscles to breath
The muscles in the neck being used to breath
Lethargic

Ultimately admittance is low sats - which you’d only know if you go to a and e and they measure them or you bought a sats probe for Home but you can generally tell how bad they are by observing them if you know your child well

Hi Sheep I always take my son in when the muscles in his chest and stomach are obviously working very hard (recessing). As Yellow said it is quite obvious how ill they are.
It sounds like your sons wheeze is quite manageable at home. For us it always turns into something more serious hence why I’m pushing for further investigation.
From what I’ve observed and heard from the docs at the hospital, wheeze is very very common and manageable - if you already have the inhaler I really wouldn’t be worrying. You know your child and if he doesn’t seem right and is breathing too hard and sucking in his muscles seek help - they will never mind seeing a child with breathing trouble!!