1 year old with pneumonia

[trombolese]

Hi, just wondering if anyones LO’s have had pneumonia that won’t shift? DS3 who is 1 has been in hospital for 2 of the last 3 weeks (we got discharged but had to go back and he ended up in HDU, we nearly lost him and it was the most traumatising time of my life) with what they’ve now said is a bad case of pneumonia.

He has had 4 lots of different antibiotics, 2 lots of steroids, been on optiflow, oxygen, magnesium sulfate the lot. He’s paler than anything I’ve ever seen, he’s not overly unwell in himself but this kid was dancing in his cot entertaining a nurse while sucking in his chest muscles so much it looked alien about an hour before he got taken to HDU and they had to save his life so I’m not taking that as anything.

I just feel like I’m not being taken very seriously. He came out in a wicked rash yesterday, they think it’s a penicillin allergy. He’s wheezy again tonight and we were only discharged Monday and a GP listened to his chest yday and said crackles but no wheeze. Tonight he’s got a definite wheeze and his lips are going blue when we get him out the bath and his hands/feet are constantly freezing with high capillary filling times after. They do warm up but obviously his circulation is bad 😣 the doctors just don’t want to know.

How long is it going to take for this to shift?! I’m so fed up with feeling paranoid. Sorry for these ramblings, I just feel so helpless 😭

Please just go back tonight if worried & lips blue etc - have they taken a chest x Ray? May need a repeat one to see if the pneumonia has actually gone?

All my kids had regular chest infections & one similar to you was a happy wheezer on the ward until suddenly all systems go and HDU etc etc He is now 11 & he was always impossible to judge how unwell he was by appearance or resilience as just seemed to keep going even with double pneumonia etc -

A paediatric SATS machine helped reassure me, once they got older but at 1 and having been so unwell, I would go back -

I'd go back too, sometimes you just have to keep pushing until someone listens.

Much older but dd1 had pneumonia aged 8yo.
Started with shoulder pain, which she hid very well. Being determined she did 3 ballet shows, a swimming party and was halfway to school (40 minute walk away) when she sat down and admitted she felt bad. She then had to walk back...
The doctor couldn't believe she could even stand up with her stats when I took her in.
The first antibiotics she was given, the pneumonia was resistant to and she was considerably worse 24 hours later. So they gave her 2 more antibiotics.
She had a fortnight on 3 types on antibiotics. Then another 2 weeks on 2 antibiotics.
She did appear to be getting worse to my eyes for about the first 10 days. The doctor explained that she was getting better (after about day 4) but things like the blockage was beginning to shift, so she was coughing, and wheezing. I was told coughing was good; the fact she hadn't been coughing was actually a warning sign.

She lost so much weight she was lighter than she'd been aged 5yo, 3.6yrs earlier.

It took her about a year to regain her strength, and nearly 2 to regain the weight she'd lost. She's struggled with the cold ever since.

What I'd say is wheeze is generally better than crackles or squeaks. Can you put your ear to his chest and listen and see if he's "just" wheezing.
Don't be afraid to go back to the doctor and ask. We had the doctor doing two home visits a day for most of the first fortnight until they were sure she was recovering.
You can order an paediatric oximeter (for measuring oxygen levels) on Amazon. Some say over 5yo, but they'll give you an idea. Warm his foot up and stick it on his big toe is I think more accurate than a finger at that age.

When I had pneumonia (as a child), they used to do a method called "tip and tap", where I was laid down with the bed sloping gently downwards and my head at the bottom. They'd tap gently my back and encourage me to cough. I don't know if this helps at all.

You may also find having him in a steamy atmosphere (put the shower on hot full blast) helps his breathing. it does for croup etc.

But any worries, get straight back to A&E/doctors as pneumonia isn't something to play around with.

Hi yes they’ve done a chest xray, x1 when he was admitted in December and x1 when he was admitted to HDU last Wednesday. They said the pneumonia was still exactly the same on both X-rays which doesn’t fill me with hope as he’d already had 3 lots of antibiotics by then and this time he had waaay more gunk in his chest. It’s only in his right lung. Any virus he gets sends him straight back to being so so unwell. They’ve said nothing about antibiotic resistance or anything like that.

As far as I can tell they are literally just going by his lung sounds/oxygen levels in terms of hospital treatment and he was fit for discharge on Monday so now I’m just sat here panicking all the time! He’s definitely still got it as he’s still raspy/crackly/wheezy. The GP knew instantly what lung was affected yesterday when I took him to get the rash looked at and the consultant he saw in hospital has said it will take 2-3 months to fully recover (so answering my own question there!) but when we took him to out of hours last night (the rash got significantly worse after treatment) the doctor there was so dismissive of all of my concerns incl the blue lips/circulation etc. so now I feel a bit like a pain in the arse even though I really shouldn’t as it’s all so serious.

Im so glad to read some positive stories though, these kids would keep going on and on they don’t let anything stop them do they!!

and also we do have an sats monitor at home which said his spo2 levels were 93/94 tonight so just really on the cusp again 😣 inhaler seems to have settled the wheeze.

Have they done sputum swaps to ensure it’s the right antibiotic?

have they called on a respiratory physio to help loosen the crap in his lungs?

See this is what I’m looking for! They have done neither as far as I’m aware - he has had bloods though so I’m assuming what he was on was the best course of action for him. I feel so disappointed with the lack of care we’ve received, especially as he’s still unwell. Our local hospital is pretty much if you’re not on oxygen we can’t help, we can only send you home with inhalers/steroids/antibiotics and repeat. The follow up with the consultant is in May !!!!! That’s 5 months away 😅 I’m going to call the GP this morning and push them a bit more instead of fobbing me off. Thank you x

Have you got another hospital near you OP? I'd be very tempted to go to another to receive treatment for your son!

My 1 year old DS had pneumonia in November last year. Extremely stressful and we did 2 nights in the HDU before being moved back on to the normal ward for the following 4 nights before being discharged. He was much better at home although it took a while to shift all the build up in his lungs so that probably took another week of physio before he felt mostly back to normal. I say this because I would not accept being fobbed off in your case and I’d be so worried about his symptoms. You need to continue to push for someone to look at him again x

Where do you live? If it was me I would bypass local hospitals and go to the children's hospital in a city as they are in a different league. Please go off your instinct and don't necessarily trust everything you are told. If you are concerned keep taking him back to hospital. I say all this from experience of having an 18 month old with pneumonia and the doctors initially missing it on the X-ray at our local hospital and sending us home. You are the person that knows your child the best and if you are concerned seek help.

I would echo other posters, my child had pneumonia last year, milder than yours, and the sputum was tested so they could figure out the correct antibiotic and they got daily chest physio. Including some medicine that liquified the gunk in the chest to allow them to suction it up. Can you see if any hospitals near you have paediatric respiratory services? Children's hospital or any big tertiary centres should have it. We were on a long term antibiotic for months after to shift it and it took a long time for them to regain weight but this winter has been much better!

Thank you all, I feel like I’ve been validated a bit as I know his symptoms are very concerning. Unfortunately, we live about 1.5 hours away from the nearest big city hospital. Ours is a big hospital but so short staffed, you are constantly seeing different doctors and wait times for consultants are terrible. I’ve called the GP again today so I will really hammer it home to them that I’m not happy with his current treatment plan and ask if there’s anything else that can be done ie physio and sputum tests which he has so far not been offered.

The first week he was admitted over NY, we were actually sent home while he was still on oxygen in the night - only 0.5 but his sats were sitting at 88. The doctor said “he would be fine” but his lung has obviously not had any chance to recover whatsoever and now we’re in this situation. He was also left for 5 hours on the ward with severe breathing difficulties (despite the registrars supposedly doing “2 hourly chest assessments”) and that’s why he ended up so so poorly and in HDU. Drives me bonkers and I’m so worried about my little boy. Awaiting doctor phone back so hopefully I will get somewhere with it.

That does sound concerning. Whenever DS has been hospitalised on oxygen we have had to do 24 hours off oxygen before discharge would even be considered.

Definitely go back if he's cyanosed and also has a capillary refill time of more than 2 seconds! Either of those alone would put him in the resus area at the hospital where I work.
Go to a&e and insist!

Our hospitals policy is the 24 hours off oxygen prior to discharge OR a significant sleep keeping o2 levels above 92. It was so wrong of the doctor to send us home, even when we questioned it she assured us he would be ok. Going to be making a big complaint

Thank you so much everyone, I’m still awaiting GP call back (annoyingly they called at 9:15 but it didn’t come through on my phone 😣) but if no luck there I’ll be taking him to a&e tonight and insisting on a better long term treatment plan. X

Yes definitely register a complaint. The doctor needs retraining. Trust your instincts, you know your child best.