Reflux Help & Support Thread

[gilz82]

Of course you can

 

[lilbumpblue]

Thank you...hope you are all coping ok with your sicky babies!

Bit of background on us...I suspected silent reflux when james was about 8 weeks old but got no joy from gp or hv! James was exclusively breast fed until he was 3 months old then we introduced formula to try and fill him up a bit...this is when he started to slow down on his weight gain and was gaining 3oz 1oz here then and evrywhere some qweeks he was even losing weight so the gp sent him for tests where it was discovered he had a problem with his kidneys. He was admitted to hospital on the 12th April and they put him on neocate to try and boost his weight but he wouldnt take a bottle so they ended up passing a naso-gastric tube and put 4oz of milk straight down the tube and he bought the whole lot back up and from that very day he has been sick like im sure only you mummys would understand! Whiole we were in hospital he was having 6 changes of clothes a night due to being pump fed overnight and then more changes in the day. They put him on meds but he is so sick constantly that they do nothing!

It was reaaly getting to me as nobody was listening to me...im sure they thought i was exhagerating(sp). Anyway James has not put weight on in 3 months and the consultant from birmingham is very concerned about it and keeps trying to tell me how important the weight gain is...I BLOODY KNOW!!!! Try telling his consultant and dietician that!!

Anyway we have had joy this week and they are finally doing something about it he is going to have a barium swallow to see how bad the reflux is and whats happening in there. depending on the finding he may have to have his stomach valve tightened and have a PEG fitted at the same time.

Woah sorry for rambling just needed to get that off my chest x

 

[happyface82]

Hi and welcome!

I'm so sorry you have it so difficult it is really not fair! I am glad they are finally doing smt about this. Do you have to wait long for this? I really hope you get some answers soon and they find a way to help him. Keep us posted!

 

[lilbumpblue]

Thanks happyface...just waiting for the letter not sure how long it will take thou but the specialist put it as a 'matter of urgency' x

 

[KellyC75]

To all Mummys & Babies

 

[elliot]

Hi ladies, I'm wondering if you have room here for another? Honestly though, I'm not even sure if my LO actually has reflux or not. Dr. said yes and prescribed Zantac, but LO didn't change much on it.

Here's the scoop on us...

LO symptoms:
-frequent spitting up of tablespoon or so, most days after every meal, with the occasional 2 day streak of no spitting at all (the 2 days make me giddy with joy then I'm ready to die when the spitting comes back)
-no obvious pain with spitting, but it sometimes comes out the nose
-frequent congested sounding breathing
-trouble sleeping, especially during the day, short naps
-wants to be held constantly
-fusses a lot
-wants to eat almost immediately after finishing most times
-won't sleep on back at all, only on belly and preferably on mum's chest
-wants to be in constant motion, prefers to be in baby sling while you walk
-hiccups at least 5 times a day most days, long and hard

Other info:
-this is our first LO, she's about 10 weeks now
-she was breech, c-section and 5 weeks early, in NICU for 12 days
-we EBF and she doesn't like the paci
-weighed 5lb 7oz at birth. has gained well. Now 9lb 13oz


Things we've tried that don't seem to make a difference:
-Zantac
-probiotics for mom and LO
-elevated headboard, sitting up 30 minutes after eating
-LO doens't like swing, bouncy seat or car rides
-rice cereal in bottle with breast milk
-smaller feeds more often
-holding off feeds for 3 hours
-pumping just before feeding and block feeding in case of foremilk imbalance
-cutting out dairy
-gas drops

Currently on very limited diet to see if that helps and starting to feel like it will never end. Had 2 great days then this morning we're puking and crying. I sure wish there was a magic bullet.

Sorry to go on, just feels good to get this all off my chest. Our Pedi Dr. says she has reflux but also keeps telling me all these things (puking and wanting to eat constantly) are normal and acting like I should just get over it. It makes me wonder if she actually has reflux? I've never had a LO before, so I just don't know

 

[aliss]

Hi elliot, unfortunately yes there is room here! Welcome If she was preemie then she is at a higher risk for acid reflux disease.

Your pediatrician sounds frustrating. I hate to say this but unfortunately sometimes nothing really works except time. For us, that was all we could do (and keep doing all the things that "don't work" because as time goes on, those same things could start helping).

One thing to help your sanity is to wear LO upright on your chest in a proper sling (ie. an ergo, a mei tai - not a Bjorn or anything like that). Have you got one of those? The proper sling will compress their chest against yours rather than leave it a little loose like other mainstream carriers. That really helped us when nothing else did. I wore him for hours daily. Allllll day long. Outside, in the rain, in the snow, if that's what it took.

Until then, time is your best friend and getting through each day. You may need to consider higher strength medications.

 

[elliot]

Hi elliot, unfortunately yes there is room here! Welcome

One thing to help your sanity is to wear LO upright on your chest in a proper sling (ie. an ergo, a mei tai - not a Bjorn or anything like that). Have you got one of those? The proper sling will compress their chest against yours rather than leave it a little loose like other mainstream carriers. That really helped us when nothing else did. I wore him for hours daily. Allllll day long. Outside, in the rain, in the snow, if that's what it took.

Until then, time is your best friend and getting through each day. You may need to consider higher strength medications.

Hi aliss, and thanks for the welcome

We have a Beco, and it's the only thing that consistently helps LO relax and stop fussing, and often even get a nap. I'm learning to wear her more and more, as she's content that way. Stinks though when I strap her in after a feeding and pukes all down between our chests

 

[aliss]

Hi elliot, unfortunately yes there is room here! Welcome

One thing to help your sanity is to wear LO upright on your chest in a proper sling (ie. an ergo, a mei tai - not a Bjorn or anything like that). Have you got one of those? The proper sling will compress their chest against yours rather than leave it a little loose like other mainstream carriers. That really helped us when nothing else did. I wore him for hours daily. Allllll day long. Outside, in the rain, in the snow, if that's what it took.

Until then, time is your best friend and getting through each day. You may need to consider higher strength medications.

Hi aliss, and thanks for the welcome

We have a Beco, and it's the only thing that consistently helps LO relax and stop fussing, and often even get a nap. I'm learning to wear her more and more, as she's content that way. Stinks though when I strap her in after a feeding and pukes all down between our chests

A beco is a good carrier. I totally know what you mean about the puke. I used to wear 2-3 puke rags between his face and my chest. Still managed to soak them LOL but at least it caught the worst I shouldn't laugh but I suppose when I look back it was amazing how we did whatever the hell we could.

 

[Fraggles]

Hi ladies, I thought id come and say hello as my baby (he's almost 8 months now) has GORD, the reflux got very severe but he's on meds now and has a consultant who has been looking after him.

We have had alot of stays at hospital so it will be nice to hear other peoples experiences with reflux.

 

[KellyC75]

Oh how I pray that my baby (due 1st March) Does not suffer from this terrible condition

 

[lilbumpblue]

have any of your lo's lost weight or not gained due to the amount they are sick? X

 

[Fraggles]

have any of your lo's lost weight or not gained due to the amount they are sick? X

Lost alot at first then was a slow gainer. He was gaining max 8oz a month then went on new meds and gained double that in 2 weeks. We stop meds today though as we are on a drug trial. So scared the sickness will be back.

 

[KellyC75]

have any of your lo's lost weight or not gained due to the amount they are sick? X

Yes, my Daughter was a very slow gainer...She wasnt sick huge amounts, but struggled to drink her bottles through the pain

I wasnt at all used to a baby slow gaining, as both my Boys were fast gainers (they thankfully didnt suffer reflux)

 

[elliot]

have any of your lo's lost weight or not gained due to the amount they are sick? X

Mine has been a big gainer. That's part of what makes this so confusing for me.

 

[gilz82]

Noah gained really well to start with as he comfort ate and my stupid hv told me to just keep feeding him every 5 minutes! Once the paediatrician found put and made us stop that he started to refuse bottles and has gained slowly since then.

 

[sarah1981]

hi what dosage are your LO on ranitidine please. Have been to see GP as daughter is projectile vommiting a lot recently and is generally very irritable,i wondered if dosage needed increasing because i know it is based on weight and he said no she is on maxium dosage maybe she has a viral infection.
Lily is 8kg and on 0.7mls of ranitidine 3 times a day.

 

[AP]

sarah I'm not sure of the dosage but theres a min dosage for the weight, AND a max dosage. Generally docs stick to the min dosage scale so that theres room for increasing the meds if required.

Otherwise, it might not just be working for Lily anymore. I know ranitidine lost its effect for us, and she took a reaction to domperidone in the end!

 

[gilz82]

That's complete crap Noah was 0.75ml nearly two months ago and he was only 4.5kg. That was also three times a day.

We found ranitidine stopped working for us completely regardless of dosage so we were put onto omeprazole.

 

[AP]

Just thought I'd update. We have actually had a breakthrough, although I have no idea what it is exactly.

At Alex's 2 year (actual age) check the neonatal consultant asked if we had tried cutting out dairy etc. Things were getting worse again, even on 20mg omeprazole

I tried to find out more about doing this but meanwhile gave her soya milk. She hated it. The littlerefluxers forum (fab!)suggested Oatly milk, and life has been quiet ever since.(bearing in mind shes nearly 2 corrected)

So, I have NO idea what is going on. We are finally getting reffered to the gastro clinic to investigate. All I know is THERES NO SICK!!!