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Children's health

any GPS/experts in intolerances/REFLUX and throat/breathing/larynx that can help my poor newborn?

41 replies

mad4mybaby · 06/01/2009 17:13

ds2 is 6 weeks old and has rflux. (ds1 had severe reflux and milk allergy and soya intollerance) i didnt breast feed and he was put on cow and gate comfort. he had bad tummy and wind etc and same signs as ds1 so gp put him on nutramigen and he was a bit better. saw paed at 3 weeks old who put him on neocate as she thinks he has dairy/soya intollerance. She said stay on for 1 week and then try ranitadine. He was bit better on neocate and the ranitadine helped the screaming from reflux abit. he has been on neocate 3 weeks and ranitadine 2 weeks but he is now getting worse each day, he has severe wind that only comes out in farts and just seems to get stuck and he just cant get it out. he ends up in agony. we use infacol and gripe water which helps for a short while.

he is still hiccuping alot and you still cant lay him down after feed and sleeps propped up so i know the reflux problem is there.

the other problem that he has is that since he was born hes been VERY loud breathing and snuffly/snorting and was told just newborn mucus. this carried on and day before xmas eve he couldnt breath and got odd cough like a cat spitting up a furball. next day saw gp who said he had catarrh and keep doing what we were (steaming etc) any way last sat he couldnt breath again and saw out of hours gp who said chest/lungs all clear and that the problem was in the throat upwards and suggested poss floppy laryinx and that as we were due to see gp following monday i needed to discuss it with her. Anyway saw a registra who was awful and said he just had a cold which made himstop breathing. he didnt examine him. i complained and hopefully seeing the prob paed friday. he snores very badly and wakes up all the time. He has never fed very well csince born and alot of milk comes out of mouth when feeding. he struggles to breath when feeding too. he has never increased the 3oz i make up each feed but is putting on weight fine.

We have also bought a humidifier and cant think of anything else we can do/try to help. Any suggestions of what to do or what could be wrong id be very greatful

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whinegums · 06/01/2009 17:32

Hi, this sounds like my DS. I self diagnosed reflux after weeks of screaming which stupid HV said was colic. Doc prescribed Gaviscon, which helped immediately. Separately he was making strange noises (he's my only child, so I didn't have anything to compare it to) and I mentioned it to doc at 8 week check, because DP has asthma and I wondered if he had breathing difficulties. She suggested floppy larynx and explained link with reflux.

We were referred to consultant at hospital, they confirmed diagnosis via fibre optic exam - not v comfortable as tube down (or is it up?) nose. Consultant said to keep going with Gaviscon and also added Ranitidine. DS has always been a good eater, and has put on weight. We went back to see consultant at the beginning of Dec and he signed off DS, but we have to keep giving him the reflux meds until he's 8 months.

However, it can be much worse than this, and interfere with breathing, etc. Hopefully when you see the paed on Fri they will be more helpful, sounds like the registrar wasn't.

Not sure if that helps or not, but good luck.

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mad4mybaby · 06/01/2009 17:56

so did they just go ahead with the tubething just because of noise?

was te tube in for 24 hours to measure the acid? (that was what he got to have if ranitadine doesnt work paef said last time) or was it the camera that they are under general anesthetic?

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stripeyshirt · 06/01/2009 18:04

colic, i got to hate that word.

to cut a long story short, my DS was born aided by ventouse (suction), made a lot of very low grunting, high squeaking noises in early weeks, screamed for at least first three months, screamed when moved, screamed when laying on his back, screamed when feeding...all the professionals said 'reflux...colic'. feeding was far too often (soy based, suspected allergy but wasn't) and small amounts at time - seemed like he wanted more but couldn't - he was 8lb 6 when born so needed the food. so bad, in hospital for obs - they reckoned it was ME that must be doing something...you can prob imagine how i felt at that point.

finally i took him to cranial osteopath - wish i had found her sooner. she found much tension in his middle back, base of skull, and right shoulder/neck area. talked of connection between nerves in this area of skull and the stomach, and tightness in valves at top of his tum. this accounted for problems i had seen. she worked on his head, his stomach and his back over a few months, and we saw improvement even after first session. in her opinion, birth by ventouse at high speed did create a lot of tension and discomfort in his body, and the stomach would be affected.

he started spitting up a lot at about 8 weeks, did go on the reflux meds until he was 8mths or so. used the infant gaviscon at times also.

good luck at the paed, hope they listen to your concerns properly, sounds like there are a few things going on with ds2.

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mad4mybaby · 06/01/2009 18:18

iv seen colic babys and he doesnt look like that.

saw a cranial at a few days old and shes seen him a few times and said now he 'feels' very healthy and nothing else she can do for him. i trust her as ive seenher for ages

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whinegums · 06/01/2009 19:03

Hi again - yes, they did fibreoptic larynxgoscopy (sp?) because of referral from GP - not the acid probe, but the camera down the back of throat via nose. DS only had a shot of local anaesthetic up his nose for it, and it was over in 5 mins. He wasn't best pleased about it, and DP had to hold him very tightly to keep him still, but it wasn't too bad, and gives an absolute diagnosis.

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Elibean · 06/01/2009 19:11

Hi again, Mad4MyBaby, sorry to hear the registrar was so unhelpful. Was he/she an ENT one? If so, I'm shocked, because it does sound a lot like reflux and/or laryngeal issues (I'm no medic, but as you know dd has laryngomalacia).

She put on weight ok until around 6 months, and the GP was inredibly unhelpful about the reflux....until the laryngomalacia was diagnosed, at which point the paediatric ENT consultant put her on meds anyway. Reflux will make inflammation around the larynx worse, so needs treating if that IS the problem.

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mad4mybaby · 06/01/2009 21:20

i have no idea what he was, just that he was the registrar as my paed (who is a paediatric gastrologist whatever its called) im so stressed about it and is pain is really bad. i get the odd time when he is ok and he is such a lovely laid back boy. feels like no one wants to help me. waiting to see my original paed this friday am. I dont know what to do if she doesnt agree with me.

ds2 has had hiccups 7 times today aswell and hasnt done a poo either

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whinegums · 06/01/2009 21:30

Mad4mybaby, could you get some infant Gaviscon and try him with that? It stops the feeds from coming back up - even if he's not puking, he might have silent reflux like DS has. Ranitidine neutralises stomach acid, but doesn't stop food coming back up the gullet. He also had/had hiccups a lot. At least your DS is putting on weight, which is definitely a good thing in these cases. I really hope you get the help you and DS need - I felt I had a Jekyll and Hyde baby until we got it sorted.

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mad4mybaby · 06/01/2009 21:34

he was put on that before we saw the paed but he got 100 times worse and i rang the gp and said erm whats going on and she said oh hes had a bad reaction to it and so i had to stop it immediately.

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Elibean · 06/01/2009 23:20

Gaviscon did nothing for dd either, apart from constipate her. She didn't vomit every feed, she just screamed with pain after feeds and had trouble breathing - and I do understand exactly how you feel about no one hearing you, or helping you, and that awful helpless feeling. I just hope Friday brings relief for your ds, and for you.

I'm assuming you've done all the usual raise-cot-head/hold upright after a feed/don't pat on back or jiggle after a feed to wind (just stroke gently or put up on your shoulder upright) stuff. I know you have the humidifier (which helps with their noses, at least). Is your GP not able/willing to prescribe Ranitidine without further tests, maybe? To keep him going till Friday, at least?

It feels endless when you're pre-diagnosis, I remember it well. Hang in there, and trust yourself...you know your baby better than anyone.

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mad4mybaby · 07/01/2009 14:30

yes he has been on ranitadine for 2 weeks now i think at first it helped with the pain Iburning) but yesterday he has def getting worse every day. yesterday he had hiccups 9 times today has been more sicking up the stomach acid....

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mad4mybaby · 07/01/2009 14:34

i know im panicking but im worried he may have something awful like a twisted bowel or something.... i know i sound like a hypocondriact but so so worried about him as i KNOW he isnt right

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Elibean · 07/01/2009 14:59

You sound like a normal mum whose baby isn't ok, who hasn't found a professional to help her yet. I'm so sorry things seem worse today, are you worried to the point of going to A&E? Its one option, may get him looked at by a different/good paediatrician, and make sure he's ok till Friday's appointment, at least?

He really does sound as though an ENT investigation, if not a gastro one, is in order...but at least A&E could put your mind at rest that he's not in any immediate danger? Not much help, I know, but do be a squeaky wheel....

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mad4mybaby · 07/01/2009 15:02

squeaky wheel?! lol. i know he isnt in immediate danger as SUCH dh said in the night he was struggling to breath but it was because he got all bunged up in the nose, yet he doesnt have a cold and has been like this since birth. he is 7 weeks almost, you're not born with a cold.. he has no signs of a cold.. with the floppy layrinx can you get bunged up aswell or not?

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mad4mybaby · 07/01/2009 18:18

r u there elibean? Sorry, have come to rely on you these last few days

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Elibean · 07/01/2009 21:09

Yes, am here, sorry, on my own with both dds tonight and no time to check in till now (dd2 finally asleep and gasping/snoring away).

Yes, she sounded snuffly and made sort of choky gurgly noises in her throat at times - but not always, often was fairly quiet in those days. As the months went past, she developed the classic squeaky door/barking dog noise - its when she breathes in, breathing out is fine (opposite of asthma).

Now, her nose seems bunged up all the time but I think thats her adenoids - which are coming out on Tuesday next week, along with tonsils.

Got to go put nose drops in, she's struggling now (she does have a cold atm) but will check back before bed. I'm glad your LO doesn't seem in imminent danger, its just a question of staying sane till Friday then I guess.....!

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Elibean · 07/01/2009 21:10

ps squeaky wheel: ie make lots of noise, don't let them fob you off

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mad4mybaby · 07/01/2009 21:45

its like his nose is bunged up, then he'l snort like a pig and snores so bad. I had him asleep on my chest and breathing was quiet, have put him in moses basket propped up and its got loud again. he angles himself diagonally with his head dropping back toward side of mattress when you lay him down on his own if that makes sense? He obv knows what is better for his breathing?

Im worried the paed wont think anything wrong? With this plus these stomach problems i keep thinking awful things may be wrong? Like i wont settle until theyve PROVED theres nothing wrong inside? That may sound nurotic but its driving me crazy, i too am on my own with my 2 ds's! Im always putting nose drops in and drowning the poor thing"

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Elibean · 07/01/2009 23:02

Very hard to tell without hearing him, but it could be laryngomalacia, only an ENT person or good paed will be able to tell you. If it is, he may sleep better on his side...can you wedge him, or is he able to roll already? dd has slept on her side since she was about 8 weeks old, and can't breathe properly on her back - she was nursed on her stomach, in hospital, with head to one side.

I do understand the stress of hearing a LO snore that loudly, ditto stress of reflux...but keep telling yourself its probably far more stressful for you than for him: if it IS laryngomalacia, its known to be hard on parents rather than kids, most of the time.

Its also possible, if he has reflux, that that in turn impacts on the snoring? I know when I had dreadful reflux (hiatus hernia in pg) it made my breathing strained, and I snored! Ditto tonsils and adenoids, but again, you need a professional to help you there. Hang in, it will get easier when you have a diagnosis and a good paed will NOT fob you off - they are trained to listen carefully to parents' instincts, especially these days.

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Elibean · 07/01/2009 23:05

re reading your post, if he is quiet on your chest (ie head tipped forwards) and noisy on his back, that would give a paed some clues, if its consistent?

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mad4mybaby · 08/01/2009 10:41

so can they give medication for it or will they just confirm he has it (if they think he needs the camera thing) and that be it? I read that they only operate if 'Surgical intervention is only warranted with severe respiratory distress'

wonderig what they class as that?

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Woooozle100 · 08/01/2009 11:07

mad4 - that would be if trachealaryngomalacia (floppy windpipe) obstructed the breathing in any way - this would be very apparant. A child would have drops in sats, apnoeas etc. Obvious breathing problems with clear signs - going bue round the mouth and fingertips, being pale leading to even more obvious signs as not breathing.

My dd had this. She was hospitalised for first few weeks of life then again at 2, 3 months. She had very obvious stridor (she squeaked when she took a breath) Her sats were unstable at first but got better. She had the bronchitrachea - do da (!) investigation you are talking about and that showed that her breathing wasn't obstructed under normal circumstances. She only had breathing problems when something else was going on (like chest infection) However her sats would always drop a bit when she was on her back - probably because her airway would be obstructed v slightly

She was not considered for operating on. Was told she was best to lie on side or stomach (not recommending this for anyone else btw - this is just what our paed and ENT advised us) and that it would get better with time as she would 'grow into' her windpipe. She has a bit and it is better now. Her stridor as it was didn't last all that long.

She also had reflux. We found thickened feeds a great help in addition to the meds (ranitidine, gaviscon, domperidome)

Any questions feel free to ask

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mad4mybaby · 08/01/2009 11:20

thanks. he hasnt fed well since he was born. alot comes out of his mouth (tried every bottle) but he never increases the amount of milk he has. the most he takes normally is 1.5-2oz. its as though he cant fit anymore in. breathing is worse when feeding and on his back. he stops breathing for about 10 seconds a few times a day esp when asleep. havent seen him blue, just pale. he is generaly a happy boy and weight fine which is frustratingas doc thinks he ok...

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Oblomov · 08/01/2009 11:22

mad4, just a hug and sympathy.
think ds2 has reflux - he is 10 wks now. gaviscon doing nothing. awake screaming most of the night. having to see paed privately , on monday. nhs referred 3 wks ago and no appointment yet= crap.
totally understand feeling of noone listening to you.
Yesterday my GP said " babies do cry Mrs Oblomov" - I felt like smacking her one, stupid woman.

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Woooozle100 · 08/01/2009 11:45

mad4 - my dd was like that. She struggled to co-ordinate breathing and feeding. Feeding was v hard work for her. And me too cos was having to do it all the time! Has anyone recommended fast flow teats to you? We used fast flow teats and was told to give her a rest every few sucks (also to prevent choking on liquid coming through quickly) Nightmare then getting bottle back in so would just tilt towards her cheek rather than taking out fully.

Have you tilted his cot at all? We found that helped with dd. We put old yellow pages under the feet of head end of cot.

Which doc have you seen who has said he is ok?

Sorry to read both you and Mrs Oblomov are having to wait so long to help sort situation

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