Reflux?

[Smill21]

Hi There
I am struggling with my DS who is 3 weeks old. Since he was born he has been formula fed and never slept. On day 3 colic symptoms appeared and he screamed and cried out in pain day and night bringing his legs up. He doesn’t like to sleep on his back when and if he does sleep. I changed his milk and the colic of inconsolable crying did clear up and we were just left with him drawing his legs up and cramping all day/night which disturbed the sleep he is/was getting. Sometimes he is so loud in his sleep it break my heart. He was put on Gaviscon but Ither than constipating him I didn’t or haven’t seen any changes. I’ve been to my GP several times but they don’t really listen or take much notice of me - doesn’t help my son seems to always appear ok when we go. He is very windy and I can hear bubbles in his tum all day. Anyway has anyone else experienced this? My GP this week said it’s silent reflux and asked me to feed him less and if that doesn’t work will prescribe Carobel. My little one at the beginning was on Hipp and sdidng drink much when things were bad so I don’t think reducing his feed will make much difference. I’m obviously not sleeping and neither is my DS 2. I’m currently walking him around in a sling whilst he has (I call them) contractions in the hope it will settle down for a bit for him to get in a deep sleep. Any advice would be appreciated

Also just to add we haven’t changed anything and the colic symptoms have come back - they went when we changed his milk and now are back again x

You have my total sympathy. My DS was just like this and it turned out to be tongue tie.

The trouble is, at this age it’s very difficult to tell if it’s tt, reflux or Cow’s Milk Protein Allergy (CMPA).

Carobel won’t stop him having wind either, it’s simply a thickener to stop babies with reflux from bringing up too much milk. If the GO really does think it’s reflux, they should be changing the reflux meds.

If he’s food when you go to the GP, have you tried filming his episode? The GP might take more notice if you have a DH and they go with you.

We went through all of this with ds3. It's so hard seeing them in pain. Firstly it's nothing you are doing . Would you try an osteopath? My boy had a trapped nerve in his neck and tongue tie. All affected his feeding.

I was going to post similarly to JiltedJohnsJulie. They will need to try various things before getting to the bottom of it, but it sounds like it could be any of the things she mentioned.

One thing I wanted to add is that Gaviscon always constipated babies, and so adds another reason for discomfort, yet GPs never seem to think ahead to prescribe lactulose with it, which they can do. The lactulose will ease the constipation and any associated discomfort, and you might find the Gaviscon does help a bit then with keeping milk in the stomach, though it is certainly no miracle worker.

We ended up on Gaviscon, lactulose and also Ranitidine (I think recalled now), and later Lansoprazole, in addition to completely dairy-free milk. It turned out DD had CMPI and a host of other intolerances, and is also very hypermobile, making her stomach sphincter way too floppy. We didn’t get a diagnosis for the hypermobilty till she was over 18 months, though.

I remember the early days and they were extremely difficult. I hope you get to the bottom of things and his symptoms ease soon.

Thank you so much for your messages. I have filmed numerous times (mainly voice recordings) and when I took it to the GP he didn’t seem to respond to it. When I first went he said to give it another week as there are no obvious ‘severe’ symptoms he can see. This time when he told me to reduce his feeds I got upset and emotional and he just told me to be ‘open minded’. It’s all so frustrating and I hate seeing my little one constantly squirming. I initially thought if he says it’s reflux give me something for it and as you say Carobel may not do anything especially as he doesn’t bring up milk. He is so tired but is always disturbed, I can feel and hear all th bubbles in his little tummy.
The MW looked at his tongue and said there isn’t any tongue tie and when he’s crying I’ve looked and can’t see a little string at all ( can’t think of the medical term) do you think it’s worth seeing someone privately to review?

Unfortunately most HVs couldn’t spot tongue tie if it was blatantly obvious. Did you have a read of the link and does he have any of the symptoms?

Another MNer posted this link last week. I don’t know if any of the techniques could be useful?

Thank You for the link that’s really helpful for when he’s inconsolable. At the moment he’s having some discomfort and I find that the sling is the only thing that keeps him calm when he cries out.
He has mild symptoms to CMPA but I’m sure that can be said for most newborns. X

I am rushing so not time to rtft but all of mine were refluxy, my first was formula fed and the hv suggested trying the comfort milk, it made a big difference to him, it's apparently easier to digest as its reduced lactose I think. My next two were breastfed and made such awful grumbly snorty noises all the time while they were little, middle one has quite bad reflux and is still on omeprazole now at age 6. I would go to the gp and be firm that gaviscon is not the best solution, baby gaviscon is just a thickener and has no antacid properties.

Regarding the tongue tie situation - the nhs won't routinely revise a tongue tie on a bottle fed baby. Not sure if a private practitioner will (I'm assuming they would) but obviously you then have the cost implication.

Health visitors and midwives are not trained to spot or diagnose a tongue tie. Often they will only notice ones that are really obvious.

Other things you could try off your own bat would be Colief, in case it’s an issue with lactose, and/or probiotics to help with digestion. We used the baby Gaia ones, which were easy to use. My experience is GPs just put all this down to being normal for young babies.

You have my sympathies. Reflux is the absolute worst.

Do you think it could be a lactose intolerance? Might be worth trying colief to see. Otherwise keep going back to your GP. It’s annoying but mine only took notice when my lo dropped centiles and had mucousy poop. We were prescribed with omeprazole which worked wonders but it is worth speaking to your GP.

Sling wearing and tummy time really helped. My lo grew out of the reflux at 8 months so hang in there x

I went through similar with DS (now 12 months). I had to go to a few doctors before I found a paedetrician that would believe me that he had CMPI and reflux. He was put on omeprazole, nutramigen puramino, and carobel (you don't need a prescription for carobel btw, it's in most pharmacies).

Also a lactation consultant diagnosed posterior tongue tie and we had that fixed at 6 weeks.

All of this improved him but bit-by-bit. Constipation is a side effect of a few of these things but our paedetrician recommended a little extra water in his bottles, and I also put him on baby probiotics and that soon went away.

By 12 weeks he was sleeping 9 hours straight and by 16 weeks he was mostly a happy baby. Introduced solids at 17 weeks and suddenly he went from 15 min daytime naps to 90 min naps. Also lots of tummy time as being on the tummy closes the valve to the tummy whereas being on their back opens it.

The medication (and prescription formula if necessary) is key though, so don't be afraid to get a second opinion. Or, like me, a fourth opinion. He is still on his meds but I will try weaning him off them soon. You'd never know he had reflux since 4 months and everything clicked into place but it has come back when we reduced the medication in the past.

I really feel for you but it will improve! Good luck.

I feel your pain. I worried my GP wouldn't take me seriously when I attended with a similar story to yours. I think she was so worried about my frame of mind that she didn't hesitate to implement changes (first was AR formula for a week. Then addition of Gaviscon if no improvement. Finally, cease Gaviscon and start on a low dose PPI like Omeprazole). I think go back to GP and explain you are physically and emotionally at the end of your tether. It's an extremely trying time, you have my sympathies.

Just wanted to add that lactose allergy is extremely unlikely, it’s much more likely to be tt, CMPA or reflux

Thanks so much for all the support, I just have to keep preserving with the GP. I don’t know why but somehow everytime I go and don’t get a step further I feel like they think I’m some kind of over protective mother - argh.
My DS was on nutrimegen 1 and the first week his symptoms really improved (despite the cramps etc) but after a week everything went back to how it was so I’m now not sure it even made a difference.

nutrimegen 1 is a hydrolysed formula meaning that it is made with dairy but the proteins have broken down.

If the GP has prescribed this formula and the symptoms improved initially, it may very well be CMPS but he needs a completely DF formula. If your GP suspects CMPA, which they do if that’s the milk they are prescribing, they should have at least referred you to a Paediatric Dietician and possibly the Allergy team too.

The NICE guidelines are here

Ask your doctor about Infacol. If changed our lives!!!!!

We were the exact same with colic and reflux. Were put on gaviscon but it reacted badly with him.
.he was also on gripe water and infacol.. Switched milk to hipp organic anti reflux and now on nothing else.

It worked a dream. Health visitor didnt reccomend it but dic said it was worth ago and there is nothing dangerous about them... they are just thicker versions of regular.

I should add that although the milk is for reflux it seems to have cured the colic too as it is thicker and has less bubbles!

My DS was similar but never actually had anything diagnosed. Infacol changed our lives too, and we changed to SMA comfort milk. I tried millions of different positions winding him and the best two were the rocking back and forth on your knee (i always felt like i was playing an accordian ha) and when he was small enough lying him on his side in my lap. Hope things improve for you.

Dd wasnt allowed gaviscon and the other stuff had been recalled and i couldnt get it at all. Switched to tommee tippee colic bottles and she was on comfort milk already and seems to work.

We had similar problems with DS. We tried infacol, copied, gaviscon and then finally reflux formula (which I believe has carobel or similar in it). The reflux formula was the only think that worked for us. It didn't stop him bringing up milk but it did ease his discomfort and made him a much happier baby. I did have to use infacol to help him with a bit of constipation. I also used to mix the formula by swilling it round the bottle and not shaking it to avoid adding air.

I would start with trying one thing at a time to see what works for your baby.