to take my baby to hospital tonight

[monkeyandlion2012]

He'd had breathing problems since birth ( chest retractions/grunting/blue spells and nose flareing. ) and today he's been sleeping lots and poor feeding on top of his usual problems..the hospital says to take him up he's blue no blue speeds today fortunately so aibu

[NicknameUsed]

"Just be aware that they may not do an endoscopy at the first ENT appointment as this is usually done under anaesthetic so he would need to be Nil by mouth for this. So dont get your hopes up. but please make sure you emphasise the grunting, chest recession and nostril flaring, these are all signs of a baby having breathing difficulties. "

This ^^. If they decide an endoscopy is required your son will be referred for one under GA.

Please reiterate the breathing difficulties. If you can't remember all the symptoms write them down. DD also had a barking cough that sounded like croup. This is typical of a narrowed airway.

[meddie]

Just be aware that they may not do an endoscopy at the first ENT appointment as this is usually done under anaesthetic so he would need to be Nil by mouth for this. So dont get your hopes up. but please make sure you emphasise the grunting, chest recession and nostril flaring, these are all signs of a baby having breathing difficulties.
If it is malacia (just another word for floppy) in any of his airways, the majority grow out of this as the cartilage rings in their airways harden up as they grow so the airways cant collapse as easily
If you have no diagnosis from ENT you also need to have and feeding issues such as reflux sorted as this can also cause stomach secretions to enter his airways which can cause breathing problems.
Good luck with your appointment

[EllsTeeth]

Mine wasn't distressed either - but I was!! Great that he will get an endoscopy. Hopefully you will soon have a diagnosis. Good luck.

[monkeyandlion2012]

I don't know why an heart scan not been done what I shall ask for one . His ent appointment at the planned investigation unit so hopefully that means a a endoscopy . He's a picture of heath this morning. I don't think I mentioned his growth and development are fine and he's not distressed but his problems

[fatandold]

Forgot to add, it always happened when he was on his back. Kept him upright after that. Also a breathing monitor under his mattress saved my sanity.

Maybe you should get gastrointestinal issues checked out too, in case it is that which is indirectly affecting his breathing.

Good luck battling the system

[fatandold]

My baby stopped breathing several times for about 20-30 seconds. Scared me shitless. Turned out was trapped wind pressing on his diaphragm (cows milk allergy, lactose intolerance and reflux caused). Brilliant A and E paediatrician diagnosed it at 8 weeks old, when several gp s had been totally useless and clueless.

[NicknameUsed]

Ellsteeth is correct. Your baby needs and endoscopy.

DD didn't have reflux, but she had all the other breathing issues that you describe.

Fortunately we had an extremely competent GP who realised the issue was airway related and when he had DD admitted to hospital for the second time he insisted that she was seen by ENT. Fortunately again, the registrar's theory about what was wrong with DD was spot on, and an endoscopy confirmed it.

Do you have a children's hospital that you can take your baby to?

We were very lucky that our local children's hospital (Sheffield) specialised in airway issues and DD received the best care she could possibly have had. The ENT consultant was one of the best in the country, second only to the one at Great Ormond Street.

Keep pushing for an endoscopy.

[EllsTeeth]

OP the paediatrician told me (and I confirmed with a literature search) that reflux and gagging often goes hand in hand with breathing difficulties in laryngomalacia. And the breathing difficulties can come and go - it can be affected by your baby's position. The paed told me that you need an endoscopy to diagnose laryngomalacia. It is worth mentioning when you see a paediatrician. Your son sounds like he's got all the symptoms. Please keep pushing for a diagnosis and don't be fobbed off. I videod my son when he was struggling to breathe and played this back to physicians which was helpful. Good luck.

[fatandold]

for OP.

It's scary dealing with an unknown condition. As people are saying, keep on fighting for him, don't take no for an answer, and you'll get the diagnosis, treatment and reassurance eventually. And yy, use PALS if you need to. The NHS hate complaints.

Best of luck.

[Northernlurker]

Do you know why they haven't done an echo? It's a scan of the heart.

[SueTrinder]

OK, to be fair to the doctors they will look for the most obvious causes of the symptoms first and if they don't find anything the choice is 'wait and see' or 'look again for something rarer'. It can take time to determine a serious but rare condition.

So you need to be persistent and generate evidence. Get your scientist hat on. Keep a diary of symptoms, film or photograph him when he does something distressing. Keep your discharge notes when you've taken him into hospital and produce them whenever you see a medial professional (FWIW I have discovered the discharge notes we get are sometimes more detailed than the discharge notes that are sent to the GP). Keep a list of all medication that his is given (this should be on the discharge notes).

Can you get someone else to come in with you to take notes and/or act as your champion? You do need to push push push at the HCP and make sure everyone knows exactly why you are worried so they do something about it. And that can be easier as a tag team than as a single tired parent.

[Marsquared]

We got our own o2 monitor for home in the end when we had this. Got it second hand for not too much. Best money I ever spent. When I was worried j put it on and if his sats were below 90% off we went to a and e. I

[monkeyandlion2012]

Full list of tests
Baruim swallow
Chest xray x2
Brain scan
Ecg x2
Alot of blood tests including blood gases which were normal

[RoryGilmore]

Has he ever had an xray or other scan?

[monkeyandlion2012]

Nickname what we're your dc signs. DS often gags on his milk and has reflux that meds aren't helping. And a noise almost like cracking sound familiar?

[meddie]

OP if you are not happy with him and he keeps doing it then push for further investigations.
The fact that he has been doing this since birth is concerning, because there is obviously an issue somewhere. Normal healthy babies do not have difficulty breathing and nostril flaring.
Unfortunately the doctors in a&e are usually relatively Junior and adult trained, unless they specifically asked a paediatrician to see him.
I second videoing these episodes and looking for anything that could possibly trigger them, do they occur after feeds?

[Cleo1303]

Hi Monkey, I think you are now back home?

I hope he has a better night. Take care of yourself and your baby and let us know how is tomorrow

[NicknameUsed]

I agree that you need to film your son when he is struggling to breathe. I can't believe you keep getting fobbed off all the time.

[monkeyandlion2012]

Also doctor was with him for a mere 10 mins we weren't even in there for an hr

[monkeyandlion2012]

So this is how tonight went toke him in taxi spoke to triage nurse he was put on see within hr box. Doctor called us in done the same stuff BTW his oxygen was 98% she said he seems fine now and said because he's been doing this for a while they're not that concernd. To the poster who thought he went blue fair enough if he did. I've got problems with my writing.

[NicknameUsed]

Chest x-rays don't show up airway problems Shakirasma DD's chest x-ray was clear, but it didn't show up the blockage in her airway.

[Shakirasma]

What investigations has your child had OP? If hes not already had one I suggest you push for a chest X-ray.

[yougotitdude]

I take it back. That was rather twattish of me. Sorry OP. Hope everything is a-okay.

[lolalament]

Ideally, if you use a pulse oximeter you need to learn how to manually check a radial pulse. The oximeter will show the pulse rate as well as spo2 level, and if you can compare the pulse showing with a manual reading then you can be sure it's right.

Pulse oximetry can read incorrectly if fingers are wet, cold, too small and loads of other reasons so you can't rely on a number just because it's shown.