reflux

[mapha2]

Hello ladies, I need help. My little one suffers from reflux, my pead suggested adding cereal to his formula or EBM.
So my question is, are there any mommies who has done this before? Adding cereal, I'm a bit unsure as my little one is only 6 weeks old, one week adjusted. Tia

 

[AP]

I know some countries do things differently. Can the paed not prescribe a med of some sort? Are there any reflux formulas available where you live? I'd probably want to try something else first.

 

[mapha2]

I'm breastfeeding, he told me it will thicken the milk not to come out. I just felt its too soon, he didn't want to give me any meds as he said its not severe. He said we jst need to thicken and elevate. Thanx for the reply

 

[Lolly1985]

My little one has gaviscon to thicken his milk, as well as other meds to help with neutralising stomach acid and to control pain. I wouldn't personally be comfortable adding cereal yet either xxx

 

[Linny]

My daughter has Carobel thickener added to her milk and that has really helped stop her being sick. She's also on omeprazole which seem to help the fussing and crying. I personally wouldn't have wanted to add cereal either but I guess things are done differently from place to place.

 

[threebirds]

I was told to add carabel too but in the end we just rode it out as it did improve from about 8 wks on.

I should add, he is still a pukey baby but it doesnt seem to bother him & he has put weight on well (still bfeeding at 17 wks).

 

[myra]

We had a rough time with my son. He didn't have what my guy be considered severe reflux because he wasn't projectile vomiting but he did have it bad even though it didn't fit that traditional definition. He cry for hours in a row and often the only way he'd sleep was if he was upright and we were walking him in a baby carrier. He'd be so exhausted that when we could eventually get him into his crib, hed aleep a couple hours laying down. But lots of spitups all day and night.

Each baby is different so this is just my experience. We tried hanging my diet (eliminating dairy, nuts, soy) but it became so restrictive that I couldn't eat much and we decided to switch to formula. We tried formula prethickened with rice, we tried thickening hypoallergenic formula with rice cereal and oat cereal. For my son, it didn't seem to make much difference. What finally helped was getting him on meds. He ended up on both zantac and prilosec (omiprezole)- he needed to be on high doses for it to help (along with occasional doses of Mylanta in between when he had a flare up) But it finally all helped. Reflux, spitting up and crying didn't go away all together but the medicines made it so much better for him and us. He eventually outgrew his need for the meds as he outgrew his reflux.

Good luck and let me know if you have any other questions re:reflux. We went through a very challenging 8months and do lots of research and reading. We even changed GI doctors when the first wasn't as supportive of treating him with the meds.

 

[Lolly1985]

We are now on dairy free formula, combined with omeprazole which seems to be doing the trick. Thing is he has a very strong gag reflex, so if he coughs mid feed he will still throw up. The dietician is talking about starting to wean (dairy free) and I'm worried that any kind of texture will cause him to vomit. Although I'm equally excited as hopefully weaning will help with weight gain and is the start of his reflux improving. Has anyone any experience or advice? I've never weaned a baby before so slightly nervous, especially with the extra issues. Our daughter came home at 10 months so was already on solids. Thanks guys

 

[Linny]

Lolly - I started weaning my little lady just before 6 months. Started slowly with baby rice once a day. Then added in a bit of pear. About a week later I tried her with pear by itself but she seemed to choke on the thinner liquid - though wasn't sick. (Btw she's on Carobel thickener and omeprazole has just been increased!) I puréed carrot and that seems to do really well. I keep it thicker but no lumps. I'm gonna try sweet potato and butternut squash next. I also tried a fromage frais which worked well too. It's been very slow compared to when I weaned my older daughter. I'm hoping too for some good weight gain but a bit early to know just yet as she is between 2-9 centile for weight. We are having a videofluoroscopy today to rule out any aspiration and check out the reflux

 

[Lolly1985]

Thank you so much! I guess a lot is trial and error with what works texture and consistency wise isn't it? I think I've hoped so much this is the answer to all our problems that I'm scared I'm heading for a massive disappointment. My little boy is under 0.4th percentile so officially failure to thrive It's awful when you're trying all you can and it's still not good enough

Massive good luck with the VF. I've had a swallowing assessment done by a speech and language colleague and she was happy with him. But sometimes I do wonder if we've missed something.

Our neonatologist discussed weaning him off the omeprazole once he is taking solids well. Is this something you will be trying? Also nervous about that! Seems so reliant on it still

Sorry for all the questions!! Thank you again xx

 

[myra]

We had high hopes for reducing reflux with solids but for a while, the only solids my son could tolerate without a reflux flare up or spitting it all back up was puréed pears. So we didn't see much reduction in reflux, but then again the puree was pretty liquidy and my son had it bad (couldn't even drive in the car with him without him screaming the whole time til he started gagging. Didn't drive anywhere for a while)

As for weaning off meds, we didn't wean my son off either (zantac or omiprezole) until long after he was weaned and on solids. We tried a couple times but he just got bad and wasn't ready. The doctor said that most kids outgrow the need for meds by one year- maybe it took my son longer because he was a 29weeker? We were finally able to wean him off zantac at 13 months and then the omiprezole at 16 months. We possibly could have done it at least a month or two sooner but he kept getting sick (series of viral rashes, ear infections and croup) that we hesitated to make any changes in meds while dealing with these other things.

What I found most helpful in dealing with his reflux was a book called "Colic Solved". It really got me to advocate for my son and make sure he was on a high enough dose of reflux meds to actually make a difference. I don't know if any of you are also having issues at diaper changing time- my son would scream when put down for changes. My husband and I had to tag team just to get through. But what seemed to make a big difference was the Gerber Soothe Colic Drops. Not cheap but the only "colic" reflux product (and we tried just about every one out there in our desperation) that seemed to help soothe our son- and of all places, on the changing table. After a couple days of the drops, he was much calmer when changed.

Forgive me if I overshare or give too much info. As much joy as people say a new baby should bring- it ended up bring such a horrible time for us until he was about 8 months old. So if anything I share can bring some relief so other families don't have to experience it all, then I tend to share. Btw, my son is now the happiest and healthy 20 month old. OH and I are still scarred by the experience but he is totally fine.

 

[Linny]

Thank you so much! I guess a lot is trial and error with what works texture and consistency wise isn't it? I think I've hoped so much this is the answer to all our problems that I'm scared I'm heading for a massive disappointment. My little boy is under 0.4th percentile so officially failure to thrive It's awful when you're trying all you can and it's still not good enough

Massive good luck with the VF. I've had a swallowing assessment done by a speech and language colleague and she was happy with him. But sometimes I do wonder if we've missed something.

Our neonatologist discussed weaning him off the omeprazole once he is taking solids well. Is this something you will be trying? Also nervous about that! Seems so reliant on it still

Sorry for all the questions!! Thank you again xx

Sorry - I just realised you are weaning diary free so no fromage frais

I don't know how many oz you feed your little man but I've found trying anymore than 5oz and she throws it up so I feed little and often. She always seems to wriggle and cry more if I leave a bigger gap between feeds but that could just be her.

As for weaning, I would just start slowly. One feed per day and you will see what foods work best. I wouldn't go too runny, but no lumps. So thick and smooth. I tend to steam carrots or whatever veg I'm doing and use a hand blender when it's cooked. I keep the water from the pan and add little bits till it's at the right consistancy.

Try not to put too much pressure on yourself - though I know it's hard. Weight gain for me has always been a huge stress, but we can only try our best.

VF findings were that when she initially starts to drink she takes huge big gulps and the valve that closes over vocal cords to protect airways when we eat/drink has a small delay so occasionally they were seeing milk flick into the top of the airway. What it means for us is she can't have anything thinner than double cream. And there is a technique I have to do at start of feed. As her feed progressed it worked better. Now my little lady has a genetic disorder which affects all aspects of her development so this valve being slow isn't really a massive surprise.

What worries me is when she gags. She will do it randomly throughout the day even when not feeding, to the point she turns purple and doesn't catch her breath till she spits up mucus - do you have this? I'm told it's all part of reflux but it's just weird.

No we've no talk of weaning off omeprazole. In fact it was increased two weeks ago and paediatrician is talking about adding in a second med possibly too.

It really is stressful, and I had nothing like this with my bigger girl x x

 

[Lolly1985]

I really appreciate both of you sharing your experiences. As you can tell I am extremely anxious surrounding feeding and am desperately trying not to be. But when the doctors tell me he needs this many oz in a day to grow sufficiently and each day we don't hit that I get so upset. But like I say his volume and weight are slowly creeping up in line with both new milk and an increase in omeprazole. He can't do big amounts in one go, 4oz is a great feed for him. We average about 3oz a bottle now, but that's great, I remember when it was a massive battle to even get him to take an oz. Our poor babies.

Myra you're so right, everyone thinks the newborn phase is wonderful but I feel like ours was so anxious and stressful. Firstly the Nicu journey, then he went in for surgery and it's this that we think was the start of his awful reflux. Hours of screaming, and vomiting acid and blood, I'll never forget it My reassurance is that he'll never remember it, it's just us that have the trauma to deal with! I'll look into that book, thank you. My son has always been ok at nappy change time although we obviously have to wait a while after feeds. But he isn't regular and the milk he's on gives him horrible wind. It sounds so tough, your poor baby.

Linny I'm glad you have some clear answers and know what you need to aim for consistency wise. Thank you for all the advice, I can see stodgy purees like sweet potato, carrot, parsnip etc becoming my best friend. My son never gags so much but a friend has a daughter also with a genetic disorder and what you describe sounds very similar to what she experienced. It sounds horrific. She is still a fussy eater at nearly 2 but now weaned hasn't had an episode for a long while. So scary :'(

I think I need to try and chill, not have any pre conceived ideas and take it as it comes. We're lucky that we have support from the community Nicu team and I am free to call whenever. So next step dietician and then neonatologist following up 10th Feb. I just want my boy to chunk up a little, hate the gasps when people ask me his age. Going to start lying and then when they comment at how he's smiling, chatting, alert, strong etc I'll just say he's really advanced!

 

[Linny]

Omg I so get that too Lolly. As she is also very small, people can never believe how old she is. The fact that she is delayed doesn't help as she's not sitting or babbling yet so just looks like a much younger baby. Most people assume she was premature (she was IUGR so had to have her at 37 weeks but only weighed 4lb 10oz) It's hard explaining no she was just little at birth cos she has a genetic disorder!

I will never forget this experience and it has been completely overshadowed by all the issues we had. I will never forget those tiny bottle in hospital and being told she HAD to drink 16ml every 3 hours and it was so hard to get that down her. Now she can do 4-5oz per feed so I need to look back at how well she has done.

I guess in all that's what we need to focus on - how far they've come and how there's light at the end of the tunnel. Somedays I'd do anything to just have to worry about no sleep or just something normal!!! Big hugs x x

 

[Lolly1985]

You are so right, think my new answer when they comment on how small he is will be 'no he's not, he's huge, you should have seen him when he was born' and will then proceed to telling them all about how far he's come. Thank you for renewing my perspective on the situation

 

[Linny]

Aw glad I could help. It sounds like you've been on quite a rollercoaster but your on the home straight now. Hopefully things can only get better x x

 

[Lolly1985]

So day 3 on a small amount of baby rice.... While he looks totally horrified he is opening his mouth for more and hasn't been sick!! Dietician said another week or so and then we'll start on some root veggies!! Have just ordered a load of silicone ice moulds for puree freezing!!

 

[Linny]

So day 3 on a small amount of baby rice.... While he looks totally horrified he is opening his mouth for more and hasn't been sick!! Dietician said another week or so and then we'll start on some root veggies!! Have just ordered a load of silicone ice moulds for puree freezing!!

That's brilliant! My little lady spent the first two weeks just poking her tongue out when I was feeding her so sounds like he's doing great. I have to say 5/6 weeks down the line she is eating more than an ice cube full of veg, she's excited by it and opening her mouth and eating really well. I'm getting her weighed thurs hopefully so will be able to see if her weight gain has improved!

Yey for weaning x x

 

[Kiwiberry]

My baby girl has reflux as well. The only medication they will give is to help with the acid and not actually cure the reflux. They told me they won't give anything stronger unless she is losing weight from the reflux. They also explained that refluz is caused because the part of their stomach that prevents food from coming back up is immature and it's something you have to wait for them to outgrow.

The things that have helped me combat her reflux is laying her in her bouncy to sleep after she has been swaddles, keeping her sitting up when breastfeeding or bottle feeding, and holding her upright against my chest for awhile after she eats. If you have a crib you can try elevating the cot with towels underneath. None of these actually cure the reflux for me, they just make it a tiny bit easier to handle sometimes.

I am not sure on the ceresl. I have always heard to wait till their a little older but not really sure on that. If you do use it I would put it in EBM since formula makes the reflux worse. At least it does for us whenever we give her her EBM and formula bottles for extra calories.

 

[Lolly1985]

Glad to hear that weaning is going well Linny! I think I may have spoken too soon, he's really not having any of it today. I've not forced the issue but inside am so disappointed. My other half said not to worry, everyone has off days. He is a bit stiffly and little things like that do throw him off his feeds so we'll see. Looking forward to trying the veg, think he'll like some flavour. Ah, really happy your little girl is starting to enjoy her food! Hoping for some good weight gain, keep us posted!

Kiwi I'm sorry your daughter is also struggling. It's a horrible thing but so common in premature babies for the reasons you state. Glad you've found some techniques to help manage it. That's exactly it isn't it, it's managing it, the only cure is time sadly xxx