Silent Reflux... Alternatives to Carobel... suggestions/experiences please!

[stardust599]

Hi girls

My DS has terrible silent reflux. His main symptoms are huge difficulties with feeding. He gulps, chokes, gags during his feeds then arches his back and screams, refuses anymore although hungry then demands the bottle back and the cycle goes on. He wants to eat every 1hour - 1hour 30 and can't manage more than 1 - 1.5oz. He also spits up watery sick ALOT and only occasionally projectile vomits a whole feed. After feeds he is incredibly unhappy, won't be lay down and keeps screaming and throwing his head back and limbs out and grunts and groans and squirms all the time. Winding him is particularly distressing as he really protests at bringing his wind up (he often brings milk up with it) and screams at me and goes rigid and arches his back and headbuts and claws at me. With lots of cuddles and holding upright and rubbing he eventually settles about 15-30mins before he wakes for the next feed. I'm not coping with the nights as he's so bad and I'm not getting any sleep.

He also has awful congestion in nose (almost so bad he can't breathe at times) and a rattly chest which I wasn't sure if it could be caused by the reflux. He has some dry blotchy red skin on his face and occasionally a rash on his neck/chest but I'm not sure if it's related to a milk intolerance as he has none of the other symptoms. He's terribly constipated and only had 6 bowel movements since he was born and they are hard/formed and he spends 1-2days straining to pass them.

My DD had the same symptoms and was medicated with omeprazole and on Neocate formula. We have been urgently referred to a consultant paediatrician to get DS assessed and hopefully get Omeprazole started. Our GP has said she can't do anything with him and we need to see the paediatrician and I hope it doesn't take too long.

Anyway, yesterday morning I found Carobel and decided to try it and the difference in his feeding has been amazing. I've been making it quite thick with 1.5 scoops per 3oz bottle. It's like feeding a different baby, he calmly drinks 3oz every 2-3hours, gently brings his wind up (it takes time but doesn't seem to bother him) and is floppy and relaxed and sleepy between feeds like a normal newborn. He has even been happy to go straight into his basket after his feed and sleep until the next one which is unheard of. We've literally not had more than 35mins sleep with him since he was born. And there's no choking etc. and screaming during his sleep. Up until 4/5am it was great and thought we'd found something that really helped.

But since 4/5am he's had terrible smelly, painful bottom end wind and been colicky screaming with it like the Carobel doesn't agree with him. It comes in bouts of 10/15mins until he passes lots of wind and he is quite content inbetween. After particularly bad wind about 11am and a distressing poo for him (not hard for a change but really thick and pasty and lots of straining) and then a projectile vomit I decided that it wasn't fair to keep him on Carobel and when he fed around an hour ago I left the Carobel out and we went back to square one. He was awful during his feed and only managed 1.5-2oz and can't be put down and has been gulping, choking and screaming out and just won't settle And now of course he has awful wet hiccups (and keeps choking and screaming at each one too) that are really upsetting him, he had hiccups with every feed before but none with Carobel feeds!

What do I do? If I don't use the Carobel his feeds are awful and he constantly refluxes and chokes and screams. But if I do use Carobel he seems to have trouble digesting it and is getting this awful colicky wind

I've thought about Gaviscon but DD had an awful time with it, even with Lactulose it caused so much constipation her bum was split and bleeding and it never helped the reflux anyway.

So then there's Aptamil Anti-Reflux but that's thickened with carob bean the same as Carobel so probably going to cause the same problems with wind and digestion. Or SMA Staydown which again made DD so constipated and never mixes right and constantly clogged our teats. Or Enfamil A.R. but I'm put off as DS only drinks his milk really warm and this apparently clogs and won't come out when you warm it Plus I really don't want to change his milk as he was on Aptamil first (well breastmilk for the first few days) and he had issues with wind and digestion and since changing to Hipp Combiotic it really seems to have agreed with him so much better.

So what alternatives are there to Carobel for thickening?? Any suggestions?

 

[floofymad]

Gosh, we had the same issues with how to thicken the feed. Gaviscon didn't work. We changed milks to prescription Nutramigen and saw an improvement, but then deteriorated again, then Aptamil Anti-Reflux (don't do it!) which gave her the worst constipation ever! and now back on Nutramigen with carobel added. I must say she's been better with the carobel. We changed to a faster flowing teat. She isn't anywhere near as constipated and she was on the Aptamil Anti-Reflux but passes pasty type poos. Last two days, I think the stinky wind has been bothering her however. Maybe it's a combination of the carobel and right milk that works?... Have you been offered a prescription milk to try?
Not sure what to suggest? Maybe his digestive system will get used to it? Maybe add a smaller amount to the feed and gradually increase if it's helping?
We started with 1 scoop per 6oz bottle, then 2 scoops, and now on 3 scoops per 7oz bottle.

 

[sapphire1]

I think it sounds like he has a milk allergy/intolerance, Holly had CMPI and she had awful silent reflux, terrible wind and trouble with pooing. The congestion, rash and other things you mention are indicative of CMPI too. I think it sounds like enough symptoms to suggest CMPI, they don't have all the symptoms necessarily. Once Holly was on Nutramigen AA (same as Neocate) her symptoms went. Hopefully the paed will let you try him on Neocate, especially if your first LO was on it. In the meantime though, the only other thickener I can think of is gaviscon. When Holly was on gaviscon though it made her symptoms a lot worse, and we were told that in cases of silent reflux a thickener can cause problems too. Hope you find a solution soon

 

[fairykate]

I think you're making it waaaay too thick hun. I use 2 level scoops in a 9oz bottle!!! Now we're trying to cut down down and wean him off it after 3mths of use (he's 6mths old) seeing as he's been having solids for 6 weeks or so.

It carries on thickening in the tummy so what you think is thick in the bottle is nothing compared to how it is inside him!! He may also need some time for his body to adjust to it. I found Gaviscon made him constipated after 1 day but never ever had an issue with Carobel.

ETA: We use Hipp too - best thing we ever did

 

[ClairAye]

My LO has reflux, but not silent.. We had Gaviscon in normal formula, then when Jay was in hospital they gave us Omperazole, Domperidone & Lactulose.. Just started using Cow & Gate anti-reflux milk.. God send! I love it, only dribbles we bits of sick, his tummy isn't making odd noises either! I also massage his tummy before bed & do the leg pushy thing He seems soo much better in all

 

[stardust599]

Ahhh.

The last 2 feeds with Carobel he has prjectile vomited back at me. The last 2 feeds without Carobel he has screamed in awful pain and refluxed and choked badly - his Angelcare monitor went off again and is only taking 1oz then screaming and refusing and arching his back etc. He is blotchy after his feeds now and really congested, definately an allergy!

He needs the thickener to be able to feed but Carobel really doesnt seem to agree with him Will try less, he has a 2oz bottle I'm going to try now so will try a half scoop of Carobel and see how we get on xxxxxx

 

[stardust599]

And will get back on at the doctors as he definately needs Nutramigen or Neocate ASAP!

 

[sapphire1]

Or just take him to A&E, you might get it quicker. Poor little thing

 

[stardust599]

I thought about A+E but I took DD there with the same problems but got a row as apparently.its notan emergency if hes not dehydrated etc.

Well I gave half a scoop in 2oz which was still too thin for him. So the added another quarter scoop and let it thicken and he finished the feed no problem and hasnt vomited! And the little bugger is hungry again!
I just realised I gave him Dentinox today at the feeds he brought back, could that have caused thenprojectole vomit? I thought it would.counteract the carobel wind!

He definately needs thickened milk to cope with the reflux but I need to make sire his stomach can tolerate it xx

 

[Lyo28]

Don't worry about an argument- poor little guy needs to be brought to a and e I think. You need the milk. It really sounds like allergy, I could have written your post months ago. Went through the same with ds. It was a nightmare, tried everything medication wise for reflux and the only time we really saw him get better was on nutramagin. He has been on it a few months now, his reflux wasn't silent so on nutramagin he was still bringing up lots. But it made a huge difference to how he drank- went from drinking like you LO to drinking normally with no screaming or arching. we were even able to take him off omperazole and he was fine for ages, although he seems to be having a bad day with it today but he has more good days than bad- I think he would be even better on neocate really. Anyway my point is, it sounds like you should just plonk yourself in a and e and insist on getting what you need, it is an emergency if a baby is that distressed. xx