Reflux with choking :(

[jellybeans]

Hi my DS is 8 weeks and has pretty severe reflux. He doesn't vomit much more than posseting but has the acid reflux and swallows anything that comes up along with extreme discomfort, irritability and violent wind and hiccups. At least once a day he will gag and choke on the refurgitated milk, usually some time after a feed (sometimes badly and once I took him to A and E as he was changing colour )

They diagnosed reflux/GORD and showed me some CPR. We tried gaviscon but no change so now have Omeprazole an Domperidone which he has been on 2 weeks. He seemed to get a little less irritable and sleeps 4-5-hours (in 2 blocks) now whereas before he didn't sleep at all at night. This hasn't stopped the choking though.

Basically I am terrified he will choke to death or pass out. Is this likely/possible. None of the doctors seem to make a big deal of it, my mum said if it was dangerous then they would have him in hospital. Has anyone elses child had this and grown out of it? I am so stressed and on edge all the time in case he chokes.

i know EXCTLY how you feel. ds1 now 2.6 had v severe reflux. was o both those medications until his irst birthday. he is also allergic to dairy and intolerant to soya and ended up on nanny goat formula., i dont know how knowledgable you are about reflux so bear with me but paed told me reflu is made worse by dairy and reflux babys are more likely to have probs with dairy.are you BF? if so try cutting dairy out for 2 weeks see if hes any better? also do you keep him upright at least half hour after feed and prop him up asleep? dont pat or joggle him about and put cushion under his head when changing nappy.

i now also have ds2 who is nearly 8 weeks and he too has reflux.been on various formulas (neocate at mo) and ranitadinebut these arent helping. got apt 2mo wth paed and hes gt have tube down for 24 hours to measure the acid before trying diff meds. am pretty sure she'l say pit him on goat milk too. he also stops breathing and chokes.

with hiccups give a bit of water or gripe water as if you let them go on it hurts them. sorry if you know all that!

I have had four refluxers, three on meds for it, two of whom were classed as severe (ie, choking, breathing issues, and we were admitted to hospital a lot while they sorted out meds for them, tube feeding etc).

mine were also found to be dairy allergic, so I had to adjust my diet while I breastfed, and then DD2 and DD3 went onto soya formula from 8/9mths, DS1 was ok with normal formula, but DS2 needed hypo-allergenic stuff......pregomin.....from 4mths.

I found the for sleeping, they were best being propped up. DS1 in fact slept a lot in the baby swing we had, or his pram, as I could adjust the back.....not ideal I admit, but we all slept, and he slept better like that, so we were happy.

with DS2 tho, I actually bought a baby alarm with breathing mat attached, and he stayed in the crib, and then cot.......still with the matress raised, but on a mattress. I have to say, I wish I had had it for all my children........I was much more confident with him than any of my others, and I think it was because I knew it would alert me if he needed me.....

it is scary being a mum of a refluxer, but try to relax as much as poss. your mum is right........if the docs are in any way worried, they will admit you both. it will get easier on you tho once he is able to roll himself...

good luck......it won;t last forever, altho at the time it does feel like it.

oh yes i had an angel care with ds1 but it broke but am thinking i will now get another. itDOES give you a bit of reassurance. I had to wean ds1 at 4 months and he was soooo much better as that helped keep the milk down too. once he could roll and sit up again there was a big improvement. They DO grow out of it although when you are at this stage that doesnt help! ds1 doesnt suffer reflux now but he does have very weak gag reflex so cant eat like jelly and mash potatoe as he gags on the textures..

ooh, mad4........my DS2 cannot eat potato and finds texture hard....they make him gag. never thought it could be connected to a weak gag reflex, but it makes far more sense than being psychological (one of my friends 'helpfully' decided).

we just know that he cannot eat certain foods as he is sick.......no problem, we just just don;t give them to him, and he and we are happy.

yep! Same goes for ready brek, weetabix etc. strange but true! I also find when he has severe cough he would be gagging and make him sick! He def does have weak reflex. Dont believe these things to be physcological!

yep, weatabix for us too!!

mashed banana as a baby also used to get to him, and sloppy puddings with custard.

oh, and yogurts with fruit in......he cannot cope when he finds the lumps.

I had a lot of worry with my DD3. She would posset/throw up and choke quite frequently. Writhe around gasp for air it was horrible. I had never had a reflux baby and so was not sure it was something I should worry about although it did terrify me and Dp. When I did take her to the doctors I was told it could not be reflux because it didn't happen straight away after feeding. Anyway I carried her around a lot in a sling or had her in a propped up moses basket always beside me and at night we had her in bed with us propped up in the middle because I was so scared she would choke in the night. She did have a couple of episodes at night so it was needed. Grew out of it after several months- not sure how many bit quite a long time. No probs now although a reluctant eater. She is 2.3.

Thanks so much for all advice/experiences. Yes I keep him upright most the day and for half hour after feeds. I had a sensor pad monitor but he wouldn't sleep in the moses basket/cot even propped up so can't use it. He wouldn't sleep in our bed either, hates it on his back. He now has an Ambi nest and seems to sleep well in it compared with before, he loves movement. I got a respisense monitor which goes on the nappy, it is reassuring although have had 3 false alarms in a week! It has to be exactly in right place to not go off. I am bf and cutting out dairy, a very kind MN has offered to send me a list of recipes so I need to sort out this CAT thing and get in touch with her. ~I just can't wait till DS grows out of this, I hate watching him suffer. I am trying to enjoy him as had a terrible pregnancy and lost a DD before him but am so scared bad things will happen to him ie choking.

hi jellybeans know excatly how your feeling my daughter 10 weeks has the same syptoms as you outlined. This is my fourth child none of the others had this problem. Everytime she has a choking episode i pick her up and pat her back this has happened several times during the night. I am terrified i wont here her during the night and she will choke. I have been to the doctors loads of times he said she won't choke on milk. Tried gaviscon didn't seem to help changed to an easy digest formula which seemed to help for a couple of weeks but worse than ever the last few days. Does anyone know when this usually gets better?

Thanks irishmama, good to hear a doctor say they won't choke (so hope he is right). So sorry your little one has this too. I have read a few stories etc on reflux websites and I think babies usually grow out of it between 4-10 months. I really hope it is the former for us! Gaviscon didn't work for us either. I am trying to cut out dairy to see if that helps DS and also have a hammock which he loves. He is my 5th child and my others didn't have it either! I think the meds he is on help with he burning acid pain, I would push to see a specialist. You may have to present at A & E and say DD was choking, that way you will probably be seen quicker. Good luck, hope your DD is free of it soon.

hi again, just thought id post to tell you about my app with paed today. ds2 is going to have a ph test with tube down him for 24 hours to measure level of acid and also having a barium xray. i asked about the fact that my ds stops breathing and chokeson the acid and at same time as ph test he got go on a monitor to see what happens as she sid you shouldnt let it be ignored...

with my ds sounding wierd/breathing probs was suggested floppy larynx but the paed said he may have the acid leaking into his lungs so hence the barium..

v sorry your ds has to go through the 24 hr tube route, mad4mybaby, but am also v glad he's being tested, iyswim. Most of all, hurrah that your instincts and observations were taken seriously!

Hope the solution is a very short while away...

Hi mad4mybaby just wondering did your first child have those tests done before going on the nanny goat milk? Please keep us posted on how the tests go. Do you know when they will be done? I have an hospital app for one of my other children in a couple of weeks so i'm going to take the opportunity to discuss this reflux problem . My G.P doesn't seem to be taking my concerns seriously!My daughter is a very happy baby and has slept through the night since she was five weeks old so it doesn't seem to be bothering her. I am just so freaked out when she has these choking episodes. {always a few hours after a feed never straight after}nothing comes up she swallows it again. I just feel like i am wishing her life away hoping she will grow out of this very soon! Jellybean I too had a difficult pregnancy with alot of complications thought my troubles would be well over when she was deliverd safe and sound.

hi, my ds1 had the barium xray done very young although cant remember how many weeks old... he was projectile vomitting EVERY feed but yet he still 'thrived' and followed the 50th centile. That is another reason never just to accept when docs say well the baby is thriving (meaning weight) because that does not mean they are well! ds2 is 'thriving' with regard to weight yet hes very poorley, worse than ds1 although ds2 only sicks up the acid not whole feeds.

im really glad we went on nanny goat, first feed was 4.30pm yesterday and he is feeding alot better on it. Dont leave it if your worried about it... it would benefit you all if you got your LO checked out.. i got very bad PND with ds1 because the paeds said i was 'a nurotic first time mum' and that he was 'thriving and there was nothing wrong. It took till he was 3 months old and for them to see him projectile sick hit the wall to realise yes he was ill! If your gp isnt worried, see another gp. Failing that go through the a&e route. I know that isnt ideal but you would get to see a paed. I was n a&e every other day with ds1. In my area the referral takes about 6 weeks and i wasnt prepared to wait this long so we went private when ds1 was 4 weeks old and in the meantime my gp had the referral going through.

Mad4mybaby glad hosp went OK, hope you get on OK with the tests (hope is as gentle as poss for your DS) and get treatment that works. Glad the feeds seem to be alot better.

Irishmama, I also thought all my worries would all be over once the baby was here, how wrong was I? My DS also seems to choke a couple/few hours after a feed. He is miserable alot of the time though. Sorry your GP isn't taking it seriously, good luck at the hospital, hope you get some answers/help.

My DS had another 'strange' episode last night, does anyone elses have simelar? He sounds all congested and cries but no sound comes out. Then he seems in pain, I can hear wind or something when I move him, sometimes he will look abit snotty and sniffle/make snoring noises too. After a while he cries and seems OK but very annoyed by it. I am assuming it is to do with the reflux.

jellybeans that is exactly how ds is. i was told newborn mucu for first few weeks, out of hours gp suggested poss floppy laryinx ( i have snother thread about it) but paed ysterday thinks its the fluid getting into his lungs. as in when he is refluxing and that is why hes having bariun x ray and monitor for 24 hours. apparanty this cn cause breathing probs/noises.

mumsnet.com/Talk?topicid=childrens_health&threadid=678387-any-GPS-experts-in-intolerances-REFLUX-and -throat-breathing-larynx&pg=2

that is my original thread. elibean has been very helpful

Thanks mad4mybaby will go read thread. I have paed next week so hopefully they will listen and want to help my DS.

HI Jellybeans are things any better with your little one. I had my dd at paed appointment last week . Was told it does sound like reflux. He also found that she has a bifid uvula (The dangly thing between your tonsils) Basically it didn't fuse correctly and is split. He thinks this is making the choking worse. Waiting for a hospital appointment to rule out a submucous cleft palate. Got even more to worry about now as well as worrying thats shes going to choke to death now have the worry of a cleft and the complications that go with that. Waiting to see a resussitation officer What am i supposed to do in the meantime i havent got a clue . Starting to feel very low like im in a bad dream!!! finding it hard to cope with my other three kids poor things they don't have a clue whats going on.

irishmama, I'm so sorry....I wish I knew something useful about either bifid uvulas or clefts, but I don't: just wanted to bump your post and wish you luck. I do know how it is being constantly worried and stressed about a LO, and combined with lack of sleep and other kids to look after (and I only have the two!) I also know its easy to feel low/depressed.

Hang in there, and if at all possible don't forget to take care of yourself - if its going to take a little while to sort things out for your dd, it'll take a toll on you, too.

I hope the uncertainties are resolved as fast as possible, keep us posted when you can!

Hi Irishmama, so sorry you are dealing with all that I truly hope your DD is OK and gets over all this soon. I don't know anything about clefts. Not sure if My DS has been checked for that, they did look in his throat, would they have seen it? My DS is on a stronger dose of Omeprazole and Domperidone and seems less irritable but still chokes every day. In fact about an hour ago he had one of his worst episodes yet and went really red and couldn't breath for what seemed ages, poor thing (and me) was terrified. I could hear the fluid constantly coming up but do nothing for DS. DS has also been more sick lately, usually it was just posseting as he swallowed the regurgitation. It's so awful isn't it. I recently got a great book called 'colic solved' which is actually about reflux, it's really good and covers choking etc. It is quite reassuring. I also am struggling with my other 4 kids trying to keep things normal for them. Keep us updated, hope all is much better soon.

jellybeans do you know the name of the authour of that book.? I will try to get a hold of it. My L.O had a bad choking episode last night.Going to the hospital on Thursday to see how to do CPR. We live in the country and the nearest hospital is 35 minutes awayso thats not very reassuring for me! I am so tired today sleeping very badly as worried she may choke when i'm asleep. Feel like I never get into a deep sleep. My H.V came round today she is very nice but no help whatsoever when it comes to advice! i was told by doctor to try Enfamil AR which i have been using for the last two weeks. It is specially thickened for babies with reflux. But she now seems to be bringing way more curdled milk up than ever before.Thinking of tryong solids at four months in the hope that may help. Relating to the bifid uvula my own G.P never even noticed it when he looked in L.O throat! If you do happen to find anything that helps with the choking please let me know. Thanks Elibean for also replying sometimes you just feel like your on your own . Got friends with kids but unless you've had a baby with reflux don't think you can understand the stress it can put you under.

God no, people do their best to understand, but its one of those thats hard to really imagine unless you've been there. dd2 had reflux, and then more recently started choking on her oversized tonsils - now thankfully removed.

Not being able to get into a deep sleep is pretty debilitating after a while, and I do understand that one - though can't imagine the stress of being 35 mins from a hospital, that does sound hard.

Re weaning early, I would try whatever might help, but depending on the reason for her reflux, solids may or may not help - dd2's reflux didnt' improve with solids, only with time, but then again her reflux was related to laryngomalacia, so possibly that makes a difference.

Thinking of you, hope you have as peaceful night as possible.

Elibean what is laryngomlacia?

Its a floppy larynx, irishmama. Usually sorts itself out as the child grows, though dd did have a bit of surgery for it at the same time as having her tonsils/adenoids out in January and is much less noisy at night now!

Its not a problem in itself, unless severe, but it does narrow the airways so dd was at higher risk of hospitalization with any upper respiratory tract infection (and nearly died of RSV bronchiolitis at 4 weeks, which is why I didn't sleep too well for a while after that!).

We thought she had asthma for a while, but it turned out all her breathing issues were due to anatomical things..larynx, giant tonsils that met in the middle, adenoids etc.