Hi,

We are having some issues with our second baby who is 11 weeks old (5 weeks prem) and I'd like to pick your brains!

He has a suspected milk protein allergy and is on Neocate fulltime (DD2 is still on Neocate). He also has quite bad silent reflux.

Despite the medications he is on he is still getting a very sore stomach about 45 minutes after a feed and it's very difficult to get him to fall off to sleep as he's squirming and grizzling and then ends up screaming because he's so frustrated that he can't fall asleep. If by chance he does nod off he will wake from a deep sleep a mere 10 mins in, with all the same symptoms. I can hear his stomach and feel it and if I hold him while he sleeps I can predict when he will wake by feeling the gurgling and then voila he wakes up crying!

He has been swapped onto Losec from Omeprozole (2 capsules a day).

Also he has been prescribed Merbentyl by two doctors and takes that in the nightime. Although the dosage confuses me. One doctor [very well recognised] prescribed him 2.5 mls 3x a day of the 10mg per 5ml, the other doc [also well recognised for diff reasons lol] told me I must not give him any more than 1.4 mls each night and that is the 5mg per 5ml strength, confusing!

DS didn't show much improvement on anything and I turned up at the doctors office in a state begging for some help after being up since 2am for another night/day.

He said his stomach is very noisy and to give him Mylanta syrup as required. So the Mylanta syrup works some of the time if I give it to him 45mins after each feed before he goes to sleep but the doseage is only 4 times per day and it's not really a long term sort of thing I don't think.

I called my GP to see if she thought Ranitidine would be a better thing to try (I think the Losec is upsetting him) and she said only a specialist can prescribe it. Since when? I could swear we got it from her for our DD?

Anyway I don't know what to do about the medications and the reflux or who to see!

I'm slightly sick of paying through the nose for a doctor who shoos me in and out and who tells me change the doseage but doesn't tell me what to and doesn't write it down. We live in Auckland, any doctor anyone can recommend would be such a help.

Thanks in advance!

Hi, I don't have any recommendations for a doc, but my DS2 was the same with his tummy, you could constantly feel it going! it felt like a small series of nuclear explosions. I found that giving him probiotics really helped with that. I'm pretty sure that there are dairy free probiotics around, I used to mix them in with his losec caps in 1/4 to 1/2 t of pear.

Good luck!

Hi Suzie,

Thanks for that advice, I will pick some up this afternoon.

Does reflux change stools?

Last night DS was unsettled with his stomach gurgling etc from 1am until 530am and then woke up again at 730am, boy is it going to be a long day!

Here's what I've noticed in his trends so far....

He is getting these spells of squirming, grizzling and crying that last for about 6 hours and during this time he will become hungry but will only take about 50mls instead of his usual 120mls. At the end of the period he will fall asleep exhausted (me too!) and then will pass a very watery light green stool (if you can call it a stool). Then he seems to be much better. Could this still be reflux?

Since I started thickening his formula in the last few days he has stopped gulping and coughing etc (which I assume is the reflux?) but he still has this tummy problem.

During the night we are at the maximum dose of Mylanta so can't give it to him, but we are still giving him the Merbentyl at night and also the capsule of Losec.

This is so frustrating and really really sad. I feel like I missed out on my DD's baby time as she had cow's milk protein induced colitis and reflux and was screaming for what felt like 6 months straight, and now it seems like I am missing DS's baby time too!

Courtandruby, I can relate to what your going through. Both my two had reflux and colic and dd would scream all night and all day in pain. They were both on neocate and merbentyl. Neonates tend to change the stools green so that's what will be causing that. From what your describing it sounds like colic. Some have found merbtnyl to be a god send, but it didn't help at all with my two. With number two I was so tired as I was up all night with a wriggly baby in pain and again during the day I got desperate. At this stage ds was around 8mnths and Another mum on here suggested I try chamrad 20 x by weleda and it made a huge difference. It says it's for teething but can be used for colic to. I see there are drops called chamrad 4 x for colic now aswell. Here is a link
http://www.healthpost.co.nz/Supplements/Homeopathic_Remedies/Weleda_Formulas.htm
Dd still has reflux but ds grew out of it at 11mnths. Dd's colic continued well into her twos. She is now three and still wakes screaming at least 3- 10 times a night in pain and behaves exactly how she did as a baby. Throws her body around , very angry and extremely hard to settle.

We have the same paed, as there is only one thatis able prescribe merbentyl. Both mine were also on mylanta. Have you tried infacol in his bottles? You could try that but check with a pharmacist first as I can't remember the rules with taking it with merbentyl and mylanta. Also another thing is, are giving the mylanta and merbtnyl at different times? I remember being told not to give them to close together, I think it had to be Half an hour apart but best to check on that one.

Also it's still really early days, I know this is not what you want to hear but from experience even with all the medication and special formula and take a long time for bubs to come right. It can take ages for some babies digestive systems to mature and with a prem might even be longer.
I really feel for you as I know how hard it is and seems like there is no light at the end of the tunnel. Ive got number three on the way and its pretty much 100% that she will have reflux too. So you might be able to give me advice then . Hang in there, I hope he gets better soon.

I just re read your top post and I see merbentyl was prescribed by two diff drs. Wow that the first I've heard of anyone elase doing so. Would you pm me your pads names as I'm interested in trying a different one third time round as I found communication not so good with our current one.

My youngest was prescribed Merbentyl by a private Paed for colic. He was about 10weeks old and from memory it was 1.3ml (don't know strength tho but made up at pharmacy next door to the dr) and it was prescribed 6 hourly as required. I was told it would work within 20mins and found after 10mins or so the screaming/pain/colic would suddenly stop after having gone on for HOURS - so much so that he would give himself blood noses, be in a hysterical, hot sweat etc. I have spoken to other drs about Merbentyl and they seem pretty divided about its safety profile, but it was a fantastic for us.

I see your baby is 11 weeks old. Colic is supposed to resolve after about 3 months old. My baby continued to get worse and the Merbentyl stopped settling him and we came to realise it was his reflux out of control. AT 14 weeks he ended up in hospital and his reflux got sorted. We haven't seen that private Paed since, who we had seen for years with my first child. To tell you the truth I think the public system is the way to go. I can recommend a fantastic Paed there who has an interest in feeding problems and we also got seen by the gastro team, dietician etc. Out GP wrote a letter to the hospital and sent us to A & E, then we got admitted for a few days and now get followed up there. It's been far better than the private care I got for my oldest with reflux. Would you consider trying to get into the public system via A & E? It's a mission but probably worth it in the long run!

Also what about a 2nd line reflux drug like Domperidone, rather than switching to Ranitidine - we were advised to switch too by my GP but then the hospital Paed said it is very rare for Losec to 'not work' for a child and prescribed Dom in addition to Losec for my son (14wks at the time) and we saw a massive improvement. GP's can prescribe Ranitidine - mine did a script that we never used. Apparently they weren't able to prescribe Losec for a period of time for babies when reflux was considered to be 'over diagnosed' and Losec 'over prescribed'...

Hi. Be careful with the weleda powder (teething and colic) they are both made with lactose. Then if a dairy intolerance is suspected, its not good!
Your baby is still quite young, could it be colics too? My little girl had both colics and reflux, that was hard work.
Colics is treated and cured (!) in France with a two weeks course of probiotics, its what I did, and after a week, she was fine! no more colics! still reflux... but it worked. The trick is there is just one probiotic that works, and I dont remember which one... sorry.
Good luck.

The weleda products I suggested are not the powder ones, they are drops and completely dairy free. To be lactose intolerant is extremely rare in babies , I know this as I went through it with my two. And the powder is safe to use with cows milk protein allergy from what I'm aware off. I could be corrected.
lactose is different and it's very rare to have a baby with lactose intolerance.

Probiotics did not help my ds colic at all and I had him on them for the first 12 mnths . And now when he'd is sick. But things work differently for different people and wish I had that luck. Lol. It's the first I've heard that there only one probiotic that works. I wish you could remember Elliot, it would be like gold for some of us on here lol.

I always thought that colic went at three mnths, but after taking my kids to a&e after screaming non stop they have sent me home saying it's colic, and this is at ages of 9 mnths.

Daisy what a fantastic Gp you have to go that far for you. I was at my gp numerous times in tears with my babies and always got sent home with a dose of pamol. Third time round I'm going to try and do things differently.

I took some time to find it again, and its the 'Lactobacillus reuteri'. It has been clinicaly tested and published in Pediatrics (3 septembre 2010?). Each probiotic is different then they each have different effect.
I hope you will find something to help your baby.

I can't tell you much about Merbentyl.

Mylanta has one of the same ingredients in it that Infacol does. You could try the Infacol instead.

Ranitidine can be prescribed by any doctor who feels comfortable with prescribing it for infants - as can Omeprazole. The recommendations in Canterbury now, are that it should not be prescribed in Primary Care.

I usually recommend Kyodophilus also available from HealthPost. Seems to work well for most and have few reactions. It comes in a capsule containing powder and doesn't require refridgeration. Our dietician also told us that it was one of the few when tested that actually contained the live good bacteria it claimed to.

Hiya.

Sorry i cant add much more to what everyone else has advised.

Just wanted to say "big hugs to you" I know sleepless nights with a distressed baby is really, really hard.

i hope you both get some relief soon.

Thanks for all your advice. We ended up in hospital as DS lost weight and became a bit dehydrated. He flat out refused to take anything more than 50mls and was crying and crying.

The doctors initially said it's probably colic and then I got the whole speech about did I ever try swaddling and perhaps I could try offering the breast to calm him. Geeze, I was thinking trying maintain my cool, great idea to offer a CMPI baby the breast.

They said we could stay o'night so they could watch his bevahiour, lol, but at about 3pm the nurses got so distressed with all his screaming and refusing the bottle they decided to put in an NG tube. He vomitted the 2nd feed so they drip fed him. It was one of the hardest nights ever, he cried for hours and hours. At midnight the nurse said we couldn't leave him in so much pain so gave him pamol and he got a few hours of sleep although was still whimpering which was so sad to watch. The doctor was a bit miffed about the pamol and said it would 'mask the symptoms that mum was saying he had'. They made me feel like they didn't take me seriously, but how could I give him nothing when he's crying in pain? He stopped crying within 15 minutes and started bang on the 6 hour mark but they still wouldn't believe that he was in pain!

All his testing came back clear, so the diagnoses was either a random gastro bug that lasted 3 weeks or a colitis episode from the pepti junior trial. He's been off all meds for 4 days now and the neocate has stopped him vomitting so we can rules out acid reflux for the moment.

Although the doctors were adament that losec wouldn't upset his stomach my mummy instinct still wonders as it is the only thing that mirrors the timing of all this.

Anyway hopefully this is a long term happiness although I know reflux can hide in the shadows and rear it's head again without warning so we'll just keep our fingers crossed.

Thanks so much for all your advice and support I really appreciate it :-)

Kia kaha x

My son had a terrible time on Losec, he was in intense pain, like he had a tummy bug but different lol, he was pulling his legs up, screamed all night, I couldn't lay him down or put him down, the only way he slept was on me while I was walking the hallway & even then in was in fits & starts & only because he was so exhausted from the crying He certainly wouldn't drink his formula, refused his dummy & turned his head away if I so much as looked at his mouth. I took him to a&e & they said he had a tummy bug & to keep giving him the losec, well I gave him the next dose & the exact same thing happened So we stopped, I didn't give him another dose & all of the symptoms went away. He still had reflux that we managed with ranitidine (he still wont eat anything mint flavoured lol) & gaviscon & he eventually grew out of it.

Yes! They can react to it huh!?

DS is back to square one again :-( our gp has started ranitidine today but he's in immense pain and is refuesing to eat. Poor little man is starving and as soon as it gets into his mouth he screams.

He's been crying for about 3 days now and the paed at the hospital is going to see him on Wednesday. I guess if he doesn't eat properly by then we'll be having another NG tube :-(

I've totally lost my confidence as a mummy and i dread the crying episodes. The gp was talking about a barium swallow, and a gi study so maybe there is something else going on?

Hopefully the new meds will work soon and the pain will go away.

I will let you know what they say on wed!

Good luck.
Interesting the Paracetamol help. It does very little for oesophagitis pain. I hope you get some answers soon. You are doing a great job.
Hugs...

Back again

Still no improvement, please any more ideas would be so appreciated!

We started Ranitdaine on Monday, improvement for one day and then return to old symptoms. Dosage was increased on Wed but still nothing. We started Elecare instead to see if the volumes would increase - nothing.

I am desperate to say the least, last night I was up with him from 130am until 530am and that was after we finally got him to sleep at 1130pm. He is clearly in pain and is not sleeping or eating

Here's a refreshed overview of what's going on:

13 weeks old baby suspected CMPI and suspected reflux.
Cries +++ all day and night and whimpers when exhausted.
Will wake once finally asleep after 20 mins or so with GI sounds and squirming and crying in pain.
Lots of burping, wind (up top and down low) all of which cause pain.
Very difficult to feed, often breaks suction after a few sucks with crying and wind but won't bring wind up. Will vigorously seek bottle again within minutes only to have the same thing happen again.
Sprays/dribbles a lot of milk out while sucking and makes clicking noises with very uncoordinated sucking (it's like he is hungry but pushes it out and then wants it again and then pushes it out etc)
Will only take 50-90mls of formula per feed.
No vomitting or spilling.
Cries++ after yawning.
Sucks vigorously on dummy but then spits it out crying in pain.
Congested breathing.

Medications tried:
Losec, merbentyl, pamol, mylanta (seems to make symptoms worse and gives diarrhea), ranitadine (current but no improvement).

Formula:
Neocate, Elecare (current), Novolac standard.

Other things we've tried:
Gripe water
Infacol
Rhugers
Probiotic
Changing bottle types and teat flows

We'll be going back to the doctor on Monday but honestly we turn up there every week and she's amazing but is at a loss too. I am thinking we should take him to a GI paed to get a barium swallow done (would like to get it through the hospital but they just aren't taking me seriously and I felt so humiliated last time we were there).

I've tried so much of the standard handout reflux stuff like propping the bed right up, feeding small amounts often, burping frequently etc. What am I missing? What am I doing wrong?

Please if you have any ideas on what's going on I would be so grateful. This is just awful and I am losing the plot!

Hi Court

Ranitidine and Omeprazole can take up to three weeks to see their full effect so don't give up on the Ranitidine just yet. You don't mention Gaviscon Infant. This could be well worthwhile in combination with Ranitidine. They just need to be given two hours apart. Avoid changing treatment too quickly/often so that you give things a chance to work. It is really hard when you are desperate though.

Have you been to the Plunket Family Centre? This would be a good idea as they could watch the feeding and see if there is something going on with this other than reflux. Otherwise a speech-language therapist can offer advice re feeding but I don't know how easy access is to these.

I'm not sure where you are but if the paediatricians at the local hospital aren't helping and your GP thinks the barium swallow is worthwhile, you could ask for a referral to the paediatric surgeon. Even if you aren't considering surgery, they might order the tests for you. Other than this, you might have to consider seeing a private paediatrician.

Hi There

I noticed in your first post that you changed from Omeprozole to Losec. Is there a difference? I thought Omeprozole was Losec.

My baby has been on 15mg of Omeprozole capsules and things are still a battle. Plus has anyone use Domperidone? It has been prescribed but I'm too scared to use it as the websites say it is not recommended for under twos and my baby is only 8 months and it mentions neurological side effects although rare it is still a gamble.

We are booked into a PH study next week. Nervous. Baby will hate it I'm sure. But I figure after 7 months of nightmare feeds everyday this is a small step for maybe some insight. However they say that the results are sometimes inconclusive so that makes me apprehensive about it too. Has anyone experienced a PH study with their little one?

MY paed said that a PH study would be a nightmare on my almost 2 year old as it is for 24 hrs and he would just rip it out. How active is your 8 month old? Barrium swallow is hard due to having to hold them down and still and drink something resembling liquid chalk but at least it is over quickly. Hope it works for you.

My experience - pH probe on a 3 month old - easy enough, on a 3 yr old - total nightmare!
He did pull it out in the early hours of the morning so we probably only had about 18 hours actually recorded.

Honestly, if doing a probe on an older child I'd ask to stay in hospital because trying to stay with the kid for 24 hours is impossible.

Barium swallow is hard if they spit it our everywhere or refuse to drink it but they can put an ng down and put it through that if needed.

Doing a barium swallow in a 3 month old was hard because he wasn't happy to drink anyway, 18 month old was a total screaming nightmare, 6 year olds not bad at all because you can bribe them but even that didn't work for Thomas aged 5 1/2 where it took 2 trips, an ng and him tied to a plank to get it into him. And after all of that the surgeon scoped him anyway - if he'd done that to start with then we wouldn't have needed to put him through the trauma.

Yeah I am really looking forward to having to do the bloody Barium swallow again when Arlo is 3 ( which I just feel in my bones we will).It was so traumatic for him he stopped even going to sleep by himself which was the only thing about his sleeping that was good! I used to have to leave the light on and stay with him. ALl sorted now.
Looking forward to the PH probe with a 3 year old too! Also I will have to take him off his meds before and I can imagine that month will be the worst I have ever endured. Bloody reflux I really hate it! I wish it would just go the hell away. He slept with me ALL night last night not just when he woke as Scott was out and I could hear him gagging and refluxing all night. I can't believe they can't operate. Poor bubs is knackered. Fell asleep on his dads shoulder before 10 this morning. Sorry for the rant but am bit pissed off with it all today. My husband has depression and has been free of prozac for 6 months and today I am almost sure he is going to have to go back on it. He is worse than useless when he is depressed and it is like having and extra child . I really don't need it.

Amy - can't and won't are diff things lol!
Not funny but ykwim and where we're at with the same guy...

Hugs - I really do know what it's like - we've officially been a reflux-free household for 2 years since 2 Dec and last night I was waking with refluxy/heartburn stuff - teach me to snack and drink right before bed so I can take meds I'd forgotten which need a full tummy!

Not nice to get a reminder of what the kids have been through - hugs!

Losec is a brand of Omeprazole. It is not funded. Some of us were having problems with the funded brand, Dr Reddy's Omeprazole. Now Omezol is available and there doesn't seem to be many problems associated with this.

Gem was on Prepulsid as a by which has a higher risk profile than Domperidone. It is only used very rarely now. She has been on Domperidone with good effect and no side-effects other than the initial loose bowel motions but that settled within 48 hours.

Barium swallow was no problem for Gem at a week old and again at about nine years. They didn't bother repeating before doing her surgery at six years as anatomically nothing would have changed and she was obviously still refluxing.
Also never had pH probe done because whether the reflux was acidic or not, it was still an issue due to volume.
Our experiences are all different so try to go into it with a positive frame of mind.
Hugs