Baby breathing, subcostal retractions :(

[dontcomeatme]

Need some advice I'm really unsure what to do at this point.
For context, I've had asthma since I was 7weeks old, I'm 32 now and still have it quite severely.
My DS2 was born via section 12 weeks ago. He was big born and I had gestational diabetes. They informed me the risk of the baby having asthma increased if I was diagnosed, plus having a section made it more likely.
When he was born the hole in his heart didn't close for 5 weeks, he was closely monitored and any signs of breathing difficulty were put down to this. The hole is 100% gone now though.
He had a "chest infection" at 6 weeks and was given antibiotics. I doubt it was a chest infection, I think the doctors just seen the retractions and gave me antibiotics to make me go away.
Basically he has been having subcostal retractions since he was born, on and off, almost like flare ups or episodes, along with wheezing, and fatigue. It is always worse when he's been excited or babbling or feeding. For example he loves the bath and kicks his little legs off, but then he struggles and is wheezy, fast breathing and the retractions worsen, then he sleeps for hours.
I have spoke to 2 different GPs and had him at A&E and no one is doing anything. Telling me that "because I had asthma it probably just made him a wheezy kid". The first time I noticed them I rushed him to A&E because that's the advice, I sat for 9 hours in a separate room because he hadn't had vaccinations, just for them to tell me to keep an eye on him and watch for his lips turning blue, then sent me home!!!!
You can't upload a video unfortunately so I've tried to take screenshots of his chest.
What do you all think it could be? Does this seem like asthma ? Anyone else experienced this?
I have a lovely GP I'm going to book him to see, but she's been off work with her sick DC that's why we saw all the others instead.
He is on the 99centile, ebf, happy little thing. We struggled with colic but seem to be coming to the end of that now. I just dont know what to do for him.
Ironically I asked a random doctor tonight what to do if a baby is in respiratory distress with retractions and he said to go straight to A&E 😑

My ds had a few episodes of this. He spent some time in NICU after he was born with respiratory issues so I was always a bit nervous. We were told that sporadic episodes without any other signs of distress were ok but worth him being seen 🤷 not very helpful. They were worse when my toddler would bring home viruses. Eventually he stopped having the retractions with the viruses, he is now 6 months old. GP said his lungs might have had a battering with the birth and afterwards and just needed time to mature. Hope the same is true for your baby!

No I'm not monitoring oxygen levels, which would be really handy. It took pestering 6 GPs just to get him a referral! The times I have taken him to A&E, by the time he's been assessed he's gone from recessions in the house, to falling asleep in the car, waiting hours to be seen, and his breathing has returned to his version of normal by the time a doctor sees him 🤦🏻‍♀️ the last GP I showed the videos too was the one who referred him thankfully because she could clearly see the struggle, but she was hesitant to give me any inhalers because of his age. I think it is asthma because I have it, so does a lot of my family. I'm not too worried about getting him an official diagnosis right now, but even just a care plan so I know what to do and when!

This is why it took so long to get a referral for us. When he was born the hole in his heart didn't close until he was about 5/6weeks, so all breathing issues were put down to the extra work his body was having to do. Then he had a chest infection shortly after that, and then the breathing issues were put down to lingering problems from the injection. Now he's 4 month and still has these issues! He is definitely worse when there's an illness going around, but the poor thing has retractions just playing in the bath or having tummy time. I feel like I'm holding him back because I'm so anxious about him exhausting himself.
Glad your LO is okay though 🫶

Buy one of those baby oxygen monitors that you attach to their feet like they have at the hospital. Expensive but I think money is no issue for something like this !!

I feel awful I didn't even think of this! Money is no object when it's my DC health. Thank you for the suggestion I'm going to Google now x

How old is your baby again? We got.l a child oxygen monitor that you put on the finger but if they are a really young baby then it won’t work as finger would be too small

We tried the finger ones. Didn’t pick it up as babies tiny fingers !! We got a cheaper one off Amazon, it was still over £100 but it works !! I had really bad pnd and ocd and it saved me rushing off to hospital all the time

He's only 4 month but he's above the 100th percentile, over 80cm tall and 24lb so far. So not sure if the finger one would possibly work on my little giant?
@Jimmyeatworld I'm sorry you struggled so much and hope you're feeling a bit better now! How old was your LO when you tried the finger one? And do amazon still sell that model you bought?

about 6-7 weeks old. Dd1 had tonsillitis at the time but we didn’t know it was this yet and I was freaking out so bad worrying dd2 was going to catch this virus she had, that’s why my dh got it. He was trying to tell me all they’d do at hospital is monitor stats, so he basically got the kit so we could do the same at home, he was right but my brain at the time didn’t see it that way!
Im sorry you’re having a hard time with your little boy. It’s so so worrying isn’t it

I think we're going to buy one to see if there is actually a drop when he's having an "episode" as they keep calling it. That sounds awful, there's nothing worse than when the older one is ill, my 2yo is poorly at the minute and I'm on edge every time he goes near his brother 😔 horrendous. Thank you again 💐

I'm so sorry to hear it's been so stressful, you must be so worried. Is there a time frame on being seen on the waiting list? I took to finding the consultant's secretary's name and ringing/emailing to chase an appointment or cancellation.
We got the Owlet sock which they can wear at night to monitor oxygen levels. It was such a reassurance for us and you know it will alarm if it drops x

I literally just got this electronic letter. I'm going to chase it up like you say, ask to be put on any and all lists they have.
I'm just looking into a monitor now I'm not sure if these ones can stay on all night so this is handy to know! It's awful when they're so small and helpless x

Would be too young the finger ones. Look into the owlet it is pricey but may give you a bit of peace of mind whilst you wait

Asked a friend to look at the thread so just uploading recent screenshots from his last bath and the retractions.

Sorry you're having such a hard time! Inhalers don't work in babies as they don't have the right receptors until around 2 which is why GP won't have prescribed them. I completely understand your anxieties but unfortunately a&e won't do much if his sats etc are normal, that doesn't mean he doesn't need to see a doctor and it's great you have the referral, it just means that if its not causing him any imminent risk they aren't the best placed to help him. I hope he gets soon and definitely follow the GP advice re any worsening. Like others have said sats monitoring may provide some reassurance that he's not dipping substantially in these episodes (or give you evidence to take forward if it does!) but also take comfort that if th episodes are relatively short and are self resolving that is a reassuring sign!

Thank you I didn't know that about inhalers! That must be why I had a nebuliser when I was a baby. They are self resolving but normally only through sleep, once he is having an "episode" he becomes more and more agitated and then sleeps for hours bless him. His wake windows are so short because he just seems exhausted all the time. But hopefully this referral will come around quickly 🤞 and yes I am reassured by that info so thank you 😊

We are going through similar with my son who’s 9 months. When he was 3 months, he caught Bronchiolitis and was really poorly in HDU. Since then he’s always looked like he’s recessed. He’s had Bronchiolitis 3 times since February (only got out of hospital on Tuesday with the last bout) Each cold he gets, goes straight to his chest and his recession is bad, nostrils flaring etc. He’s now on 2 inhalers. After the first bout of bronch, he was very noisy with wheezing and grunting. Surprisingly the first inhaler prescribed took the noise away until he’s poorly. They’ve also said with my son, he’s got a big abdomen so sometimes it looks worse than what it actually is.

its awful though, I am so anxious with his breathing

Oxygen stats at 94 for a small child with this sort of breathing needs oxygen via mask.

Been here many times.

2 kids not yet diagnosed with asthma as too young, but being treated as if they have it. We got a finger monitor. As soon as oxygen dropped to 95 that was my cue to set off for the hospital.

OP Don’t worry about going too often. My oldest was dismissed as a fat happy wheezer for his first year. We ended up at the hospital at least once a month (and every bank holiday) from starting nursery. It was the third trip that we got the right doctor and things improved after that. He’s 4 now and been well managed for the last couple of years.

Sometimes he would make a drastic recovery as soon as we got to hospital, only for it to go wrong again a few hours later - I usually take a short video showing symptoms before I set off now. Saved me a few second trips!

Not necessarily. Also two young children who have been in and out of hospital many many times with bronchiolitis and viral wheeze.

We get discharged when they maintain levels of 92 and above. Oxygen mask is when it dips below 92.

Our previous hospital before we moved used 94.

Think it varies hospital to hospital.

What inhalers is he on? As PP said, salbutamol inhalers don’t work on children so young.

Sorry OP, I know not the point of your thread but what a cutie!

I know you said the hole had definitely closed in his heart but do you still have access/contact to his cardiologists? If so (or even if you don't!) it may be worth contacting their secretary and asking if they would see him again. Does he ever look a slightly funny colour/mottled?

Yes they said salbutamol wouldn’t work. He’s on atrovent and flixotide.

Another saying that I'd be cautious with a clip-on finger monitor at that age, even if 'child-sized'. I asked about one last winter for my (then) two year old, as we were in and out of hospital with breathing issues, and the advice was that they thought she was too wee to get a good reading.

I hope the appointment comes through quickly – it's so stressful when it's something utterly, acutely life-critical like breathing!

Fair enough. We’ve had the RSVs, Bronchiolitis and viral wheezes etc, but croup is our number 1 nemesis. They get it at least once a month in winter, and occasionally through summer.

Any time DS oxygen dropped to 94 that got us a bed for the night. Any time it dropped below 94 he developed tachycardia too. Fun times. Glad we seem to be out of them (touch wood) for the big one and getting easier with the small one.

Can’t enjoy the seals at work any more as my brain locks straight onto their bark, and my adrenaline kicks in - Pavlov’s cough 😂