Silent reflux? Colic? Cow's Milk Protein Allergy?! Any experience..?!

[Charmed86]

It was so sad & strangely reassuring on the FB group to see that most mums of babies with cmpa end up at the ends of their tethers. Depression, anxiety etc are so common! My LO was given a potential diagnosis around 7 weeks, I just would not let up! He's my first, but I refused to believe that what he was going through was normal! Poor guy. I'm glad I trusted my instincts. I knew it was more than just reflux!

Of course! I've not had anything yet, but I'll keep an eye out xxx

 

[Charmed86]

Oh, just to make things extra complicated... Nutramigen Lipil is being discontinued & replaced with Nutramigen with LGG! It's prepared slightly differently & has good bacteria in it. (Prepared with room temp water). If you do try the Nutramigen again, it might be worth asking for the LGG one if you've not got it as you'll have to swap at some point anyway xxx

 

[MemmaJ]

Just a little update... We tried the Nutramigen with Gaviscon and had to give up because he couldn't drink it
It was to thick for his normal number 1/2 teats (he has various bottles!), and the number 3 teats were just too fast for him and made him gag on whatever wasn't getting lost out the sides of his mouth! With his normal teats he would end up sucking for ages, finally have had about an ounce and then would fall asleep through exhaustion as he'd had to work so hard for that ounce!

So back to Aptamil... On Monday I also went and spoke to a pharmacist about something to help him burp, as I think that's not helping matters.. We had been using Dentinox drops which did used to work, but they don't seem to be any more...
He suggested Colief which I actually thought was a wonder-drug the first day as he was completely different; but lastnight and today is back to screaming - possibly even worse than before!

I don't know what to do any more

 

[jodilee6]

Oh Hun, it sounds like you are really struggling

Can you go to your GP and get a referral to a paediatrician, it sounds like you need some proper professional help

FYI we also really struggled with gavascon for the same reason you stated so switched to carobel which is a thickner but doesn't cause constipation and I could adjust to find the right consistency for the milk.

I hope you get it figured soon

 

[Charmed86]

Oh I'm so sorry! Colief won't help with getting gas up, it just breaks down the lactose in the milk (which is pointless with nutramigen anyway as there's no lactose in it! I think you'd moved back to Aptamil by that point?)

Carobel is definitely worth a try! We've not had any problems with the Gaviscon in nutramigen, how odd that each person has a different experience! How much were you mixing it in? We only used one sachet up to 6oz & then 2 sachets when we recently upped his milk to 8oz bottles (he takes just under 7oz atm)

A lot of reflux mums swear by carobel! I would have used it if we didn't get on with Gaviscon. It can take a little time getting to find the right consistency, but once you've got it figured out, it's amazing! Gaviscon doesn't have any antacid properties, it just thickens and sits at the top of his tummy (it's not supposed to thicken until it's in his tummy, but for some reason the specialist formulas tend to make it thicken in the bottle!!)

I agree a paed might be able to help with what you're experiencing. GPs are great, but they don't have the expertise that you need xxx

 

[MemmaJ]

I was mixing 1 sachet with 4oz before. He now takes 5oz but I even tried half a sachet the all day a couple of days ago and it was still the same problem. Tried it without anything too and he threw it straight up, as predicted.

I spoke to the doctor on the phone yesterday and asked for Neocate. She agreed to prescribe it and faced the prescription to my pharmacy lastnight, so it should be ready for me to pick up this afternoon. I asked her to prescribe Carobel with it but she wouldn't as she said she'd never heard of it! So I asked the pharmacy myself to order some and I'm going to pay for it. It should also be there this afternoon.

We have already been referred to the Paeds (GP made the referral last week) - so we are just waiting for a letter I believe with an appointment.
In the meantime, I'm going to start a diary of what he does/how he is and when, and also start videoing how he is because he's always been asleep when I've taken him to the doctors so they look at me like I'm mad when I'm saying he cries constantly and won't settle!

 

[miana]

My DD has silent reflux too (and colic!) we have tried so many things it's not funny!
She is breastfed but occasionally is given expressed milk in a dr Browns bottle(which ,for us, makes a big difference).
We had her on losec for awhile but it didn't seem to work and gave her more wind! We didn't try it for long so we have her on it again in one last attempt, hopefully it works this time. We also have her on a pharmacy mixture for colic, it's kind of like gaviscon but made up specially by a pharmacist near where we live. Everyone raves about it ha ha and it does make a slight difference we have found.

People who had silent reflux babies have recommended goats milk formula to me? It's more expensive and not sold in all countries. I think there is some controversy with giving goats milk to children under 1 but it might be a bit different with the formula vs straight goats milk? It gentler on their tummies.

If bub has a cows milk allergy usually soy milk formula will often have the same effect on them that's why I'm considering the goats milk if we go down that road. I'm holding off because DD is nearly 12 weeks and I'm hoping she'll start to settle down a bit and be less of a fussy feeder.
Australian formula is in hot demand in China at the moment and certain brands are very hard to get as they get wiped out and sold at 2/3 times the price on eBay! It's crazy! So if I can breastfeed longer it will just be easier..... But not nessicarily less stressful ha ha.

 

[Charmed86]

Miana, goats milk is also not recommended for cmpa x

 

[Willow82]

LO is 4 weeks old. I breastfed for about 2 weeks (with the occasional formula feed) but I just didn't get on with breastfeeding so we switched to exclusive FF (Aptamil).

At first, we thought he was suffering with Colic (fussing after feeds, unable to settle, only sleeping for very short periods and this sleep being very unsettled, crying for no apparent reason - all of which were only really a problem at night time). So we started using Dentinox colic drops, with little effect. We also thought maybe he was just hungry because the only thing that calmed him was feeding (although not every time), even if he had only fed shortly before. So we tried Hungry Baby milk, which also didn't have any effect. Someone recommended Dr. Brown's bottles, so went and bought those... Also no change.

Whilst searching online for things to help Colic, I came across a video of a baby with silent reflux, and it was just like my LO. So I began reading up on silent reflux and started to think that actually that was the problem, as he has many of the specific symptoms for that (e.g: hiccuping, sneezing, 'wet burps', unsettled when laid flat, frequent feeding, arching back during and after feeding, noises when asleep), as well as those mentioned above which can also indicate silent reflux...

So I went and got some Infant Gaviscon. Again... no help. Discovered that Boots sell Aptamil Anti Reflux formula, so bought that.. We've been using it a couple of days and at first I thought it was helping, but that appears to have been wishful thinking as lastnight was one of the worst yet.

He has always taken his feeds well and very rarely vomits (day or night).

During the day, he feeds approx 2.5-3 hourly (4oz) and sleeps well in between. He can be quite unsettled after a feed during the day, but can be settled after a while. He also has good periods of being awake and alert, and very content.
But at night, its completely different. He is impossible to settle after a feed, and when I do finally get him to settle (which takes about 2 hours until he finally gives in through exhaustion), his sleep is still quite disturbed (cries as soon as he's put down, makes lots of little noises/cries like he's in pain during sleep, etc) - he then wakes up again just an hour or so later, screaming; and wont accept anything other than a bottle of milk (I have tried a dummy and cool boiled water), and so we do it all again. The few times we have given in and let him have as much milk as would settle him, have been the few times he has vommited it all back up afterwards.
All of this means I'm only getting around half an hours sleep at a time, a few times a night. Totally around 2 hours sleep all together, if I'm lucky! So not only am I totally shattered, but I hate seeing him so upset and seemingly in so much pain, and nothing working to help him...
It's also very frustrating not being able to settle your own baby and it's starting to make me feel like an incompetent mother.

Lastnight was terrible as he also now appears to have terrible wind (bum end!) and very loose poo (bright yellow diarrhoea) - which is also making him very uncomfortable and making him cry even more, as he straining to fart/poo so much (I had to change his nappy 4 or 5 times overnight).

I gave in and took him to the doctors this morning. I have been avoiding it as I didn't want to be fobbed off with things like 'maybe he's just hungry' or 'well baby's DO cry'.

He basically said it doesn't sound like reflux because he's not vommitting. I did keep reinforcing that I thought it was SILENT reflux and that he seems to have all the symptoms - to which he said it's probably not reflux (silent or otherwise) if Gaviscon didn't help. I felt a little bit like he just thought it was simple colic and that I am over-reacting and trying to make it into something else. I have twin boys already (they're 11), and they never did anything like this.

Regarding his poo, he just said that baby's poo does change a lot and it's nothing to worry about. Which is fine - I suspect its the new milk anyway as it's only happened since he's started the Aptamil Anti Reflux.

Before I went, I was hoping to be prescribed some Ranitidine having read good things about it - but that wasn't happening because the doctor didn't think it was reflux.
So instead he has prescribed Nutramigen 1 formula, incase it's all down to a Cow's Milk Protein allergy/intolerance. He said it may not be that, but to try it as part of the 'trial and error' process.

Does anyone else have any experience with these symptoms, and what did it turn out to be..? Also does anyone have any experience with Nutramigen formula? Did it work, and how soon did it work?!

Wow, I could have written this word for word as we are experiencing the same with DD who is 4 weeks old. The only differences are that she doesn't comfort eat (the opposite as she appears to be in pain often during feeds) and that I am getting a bit more sleep as she tends to settle around 3am. Her poos are also green which I don't think is normal. I'm going to take her to yhe health visitor and doctors but I'm worried they're going to dismiss it as being colic and tell us to ride it out.

You're definitely not alone.

 

[Charmed86]

Willow, is your LO formula fed? I know sma is well known for green poop & others might be too, it's the iron they put in it I think.

Fight hard to get your Drs to listen to you! I was fobbed off a few times as I'm a FTM & therefore don't know what's normal (according to the Drs). But I knew what Oliver was going through was not normal! By 7 weeks he was diagnosed with cmpa, put onto Nutramigen & Gaviscon & has been a different baby since!

 

[Willow82]

Willow, is your LO formula fed? I know sma is well known for green poop & others might be too, it's the iron they put in it I think.

Fight hard to get your Drs to listen to you! I was fobbed off a few times as I'm a FTM & therefore don't know what's normal (according to the Drs). But I knew what Oliver was going through was not normal! By 7 weeks he was diagnosed with cmpa, put onto Nutramigen & Gaviscon & has been a different baby since!

She's combi fed but my supply is really low so I don't think she's getting much if anything. She's on aptamil which my son was on but his poo was never dark green. I guess it could effect babies differently though.

 

[Charmed86]

My friend's LO was on Aptamil too & didn't have the green poo. It's worth mentioning to your dr when you go to see them. I don't think aptamil usually causes that problem, but then my health visitors have never been too concerned. xx

 

[medic76097]

My second son had silent reflux. He rarely spit up. I had to beg my doc for over a month to try a dose of meds to help and it took another month of increasing it to find where he was comfortable. He was on meds for seven months. Good luck. Sometimes you need to stomp your feet and demand. Go to the hospital and demand to be admitted until they test him for everything and rule things out. Poor babe.

 

[MemmaJ]

Willow how's things with your LO, did you go to the doctor?

We are still waiting for a Paed appointment following the GP's referral 4 weeks ago

He's now been on Neocate for 3 weeks and we're using Carobel to thicken it, which I'm paying for as the GP had never heard of it and therefore wouldn't prescribe it. We are still trying to get the perfect consistency..!

He's vomitting up whole feeds much less, usually only once a day now (always first feed of the morning) and is generally a bit more settled between feeds, but definitely still has digestive reactions and silent reflux symptoms (including crying in pain when he burps during/after a feed).
The Ranitidine doesn't seem to be working, and I was banking on getting a Paed appointment to discuss it all better and ask for Omeprazole, as I really don't want to keep going back to the GP

I was really beginning to think it's actually a lactose intolerance rather than CMPA based on his symptoms (for example - explosive, very acidic and mucousy poo - always during or straight after a feed). His symptoms and reactions have always been more digestive... But Neocate is lactose free and he still has those symptoms so I really don't know

 

[Willow82]

Willow how's things with your LO, did you go to the doctor?

We are still waiting for a Paed appointment following the GP's referral 4 weeks ago

He's now been on Neocate for 3 weeks and we're using Carobel to thicken it, which I'm paying for as the GP had never heard of it and therefore wouldn't prescribe it. We are still trying to get the perfect consistency..!

He's vomitting up whole feeds much less, usually only once a day now (always first feed of the morning) and is generally a bit more settled between feeds, but definitely still has digestive reactions and silent reflux symptoms (including crying in pain when he burps during/after a feed).
The Ranitidine doesn't seem to be working, and I was banking on getting a Paed appointment to discuss it all better and ask for Omeprazole, as I really don't want to keep going back to the GP

I was really beginning to think it's actually a lactose intolerance rather than CMPA based on his symptoms (for example - explosive, very acidic and mucousy poo - always during or straight after a feed). His symptoms and reactions have always been more digestive... But Neocate is lactose free and he still has those symptoms so I really don't know

Yes, I took her to the doctors who thought it might be lactose intolerance and so prescribed a lactose free formula. She was so much worse, even more fussy and her milk intake plummeted to about 40mls. On the advice of the pharmacist, we switched back to the original milk and started adding colief drops which was a right faff as they need to be added half an hour before a feed.

She seemed fairly settled during the day on Sunday but was then up and in pain from 9.30pm-2.30am. On Monday she was horrendous. She had her feeds ok but was in a lot of pain afterwards and she barely slept unless on me. I took her back to the doctors who thinks it's silent reflux and has prescribed gaviscon. I'm worried about trying it as I've read it can cause constipation and she only goes every few days as it is. Whenever she does go, she strains so even if the gaviscon works, she'll still be in pain.