GOR and Sikent Reflux HELP

[LB80]

Hi Im new to this but desperately need some advice and help. My beautiful boy has GOS and Silent Reflux. Its absolutely heartbreaking to watch him everyday and night vomit and scream in pain. He is on omeprazole and domperidone (previously tried gaviscon and ranitidine) but meds making no difference. Back at the hospital today but dreading it as I know they will just send us home.
Has anyone any ideas to help? Keeping him upright makes no difference, not moving him after a feed doesnt help nor does elevating his bed. We have tried everything. Very stressful and upsetting.
He is nearly 8 weeks old ??

[JiltedJohnsJulie]

That must be so distressing. How did you go on at the hospital? Did you just get sent home as you expected?

Not sure if I've mentioned this to you before, but have you had him checked for tongue tie?

[apermanentheadache]

How are you feeding him? Has milk allergy been ruled out?

. It sucks :(

[LB80]

Well hospital appointment was cancelled at 9am yesterday. I phoned the health visitor in tears. We are now trialing a dairy free diet for me (Im breastfeeding) to see if he is intolerant to breastmilk. Ive to keep a record of all episodes of pain/screaming, feeds and medication. Not sure when we will get another hospital appointment.
We have had a slighter better day, mostly vomiting but managing to settle him by carrying him in the sling or letting him sleep on me.
No he doesnt have a tongue tie xx

[JiltedJohnsJulie]

Te good that he doesn't have tt, although he does seem to have a lot of the symptoms.

If you suspect a food intolerance, have you read am beginning to suspect some of these storylines aren't entirely lifelike this on kellymom?

And I have to admit my ignorance, what is GOR?

[apermanentheadache]

GOR is gastro-oesophageal reflux.


What a complete bummer they cancelled the apt. When I was in your position that would've sent me over the edge :(

It is highly, highly unlikely he is allergic to your BM. He might be allergic to passed-on milk and soy proteins, though. If he is allergic to cow's milk, your BM will be perfect sans milk traces. Apols if I am stating the obvious but you really do need to be rigorous with excluding milk and milk products such as butter, cheese, yogurt, caesin and whey powder.

Hope you continue to have slightly better days. keep posting - it's a lonely and frustrating time ...

[LB80]

Morning. Thank you so much for your advice and support. The appointment being cancelled really upset me on Thurs. I couldnt stop crying. The health visitor is concerned (as is my hubby) that Im heading for depression. I dont feel like that just so stressed and upset that my poor baby is sick and distressed with it. He took a while to settle last night as was in pain after feeding but he slept for 7hours so feel refreshed this morning.
Day 2 of dairy free diet! Its tough but I will do anything if it helps him. I really want to continue bf.
Has anyone else had to rule out intolerances? Xx

[gingerbubs]

My dd wasn't vomity but had horrible silent reflux. Quite random, but I noticed a pattern that dd was much worse when I ate tomatoes. Cut them out my diet and she got loads better, if I ever slipped up the reflux got worse for a day or so. Not saying tomatoes are your culprit, and could be nothing dietary, but worth looking out for patterns. Reflux is awful, you have my sympathy! But it does pass.

[LB80]

Thank you gingerbubs. Im trying to keep a log of my diet too. Feel like Im writing a lot down! Silent reflux is awful, I can hear his little tummy gurgle and bubble then the screaming starts :0(
I moved the omeprazole to at night instead of morning so wonder if thats why his day was better yesterday. Its all a puzzle.

[JiltedJohnsJulie]

I'm DF but not for my DC, its me that has cows milk protein intolerance. Its tough at first but you'll soon get used to it. There's some good info on cmpa here, on the nhs website and on allergy uk. Did you mange to read the info on kellymom to?

Can totally understand how you feel, my DC never slept and was a screamer but for him it was upper lip tie and tongue tie which are still causing problems 10 years on.

If you are down, is DH off this weekend? Can he take him out for a couple of hours so that you can sleep or just have some time for yourself?

[LB80]

Slowly working my way through all the literature. Hubby off so been helping. Just fed bub and he vomited everywhere and no super distressed. Going to get ready and go for a walk. Fresh air required!

[JiltedJohnsJulie]

Poor little thing.

[LB80]

Very unsettled tonight and sick. Had a fairly good day despite a lot of vomiting. This is so tough. Just wish there was an instant cure or some answers.
Day 3 of the dairy free diet. Going well just wish we knew that was the problem. Can still hear the silent reflux and seeing him in pain is so upsetting. Hopefully this doesnt last for long

[LB80]

Awful day today ?? bub has been so upset with every feed. Ended up going for a drive in the car as it was only way to get him to settle and sleep but not fair on my 2 year old being couped up in the car for an hour.
Not sure my dairy free diet is making much difference now ??

[apermanentheadache]

Oh no LB, what a shame. I wouldn't worry about your 2 year old being cooped up: they don't remember and there's worse things than being driven around in the car

Sorry the dairy free is not bearing any fruit.

What does your baby weigh and when are you giving the omeprazole? One thing no-one told us (but which we discovered later...) is that omeprazole works best if you take it on an empty stomach and if you don't eat for 30 mins afterwards. This isn't always practical with a small baby though.

I would say it's worth covering all bases and like JJJ says, worth getting the TT checked to make sure it's not regrown.

[Superworm]

DS had terrible reflux caused, in part by dairy and soy allergies. We ended up in A&E one night after he had an episode of apnea and went into respiratory distress.

He is still breastfed and I've been dairy/soy free for two years. He is actually more sick with soy than dairy I discovered. I have to be very strict with eliminating it. No soy lectithins or anything that may contain traces of ... It's tough in the beginning but you get used to it and it's second nature to me now.

He was on omeprazole too which helped. It's awful but does get better.

[LB80]

Hi we had a decent night and morning however this afternoon has been awful. Screaming with pain. Im trying so hard not to cry so my eldest doesnt get upset too but its so difficult watching and listening to your baby scream in pain.
Still no sign of follow up app with hosp so going to chase it once bub settles.
Sorry for moaning but thank you for sharing your experiences xx

[Superworm]

Sorry to hear things haven't improved, it's heartbreaking when they cry in pain.

Try and stick with the dairy/soy elimination if you can. It takes about 2-3 weeks to see a difference. Eliminating soy is key to ruling a dairy allergy out. 40% of babies that have CMPA are allergic to soy too. You can always retest later once things have settled down.

Other things that helped. Keeping him upright after feeds, including night feeds.

We followed a vague version of EASY - Eat, Activity, Play so he was upright for at least 30mins after a feed.

I fed little and often at this age.

A sling helps (buggy/car seat were awful).

Propping the cot up with books.

Getting some time for yourself so you don't completely crack up.

[LB80]

Thank you superworm. We have tried keeping upright, it doesnt seem to make a difference unfortunately. Ive got a sling and usually he settles and sleeps in it however this afternoon he just couldnt stop crying. He hasnt fed much either as he just screamed when going into feeding position. We are having a little cuddle just now.
Phoned the hosp and they hadnt rescheduled another app! They have managed to "squeeze us in" to the clinic on Thurs morning!!

[JiltedJohnsJulie]

Haven't been around for a few days, really feel for you

Hope they manage to keep the appointment this time

[Superworm]

Poor thing, sounds like you are doing all you can for him.

It's good they have squeezed you in or I would say head to A&E if it continues with the not feeding. Hope it goes well on Thursday.

[LB80]

Hi. I was close to going today as felt so sorry for him. He had 2 short feeds this evening and is now sleeping. Bowel movements are now getting less too which is worrying me now. He was weighed today and is gaining so thats good.
Could really do with some chocolate!! Missing my comfort food!!

[JiltedJohnsJulie]

I have pure origin 85%. Its DF but not sure if its sf

[LB80]

Oooooh will need to look for some of that JJJ. Ive been googling recipes tonight, going to try make some DF treats tomorrow :0)

[Superworm]

Sainsburys gluten free brownies are DF & SF. In fact lots of the free from stuff is ok.

Starbucks dark chocolate bar is also ok and rather yummy.

If the feeding doesn't improve and you are worried, go to A&E. Hope you have a good night.

[LB80]

Morning thanks Superworm. Bub slept until 5.50am, fed and was all smiles until an hour ago. Very upset and screaming. Ended up giving calpol. No poo since monday so that on top of reflux etc. going to phone health visitor this morning.