Twins at 3.5 months old – wits end

[Anonymous]

Ethan and Logan, twins, almost 15 weeks old. Here is our story:

Ethan and Logan were born at just under 6 lbs each @ 37 weeks. Not too bad for twins. Ethan was fine but Logan went into the NICU after a couple hours from birth due to low blood sugar (just below their ‘normal’ level), so he was tube fed for 2-3 feedings, then bottle fed after that. Hospital NICU will not let you leave until after 48 hours of successful bottle feeds, so 3 days after their birth we were all home. Breastfeeding was attempted, but milk didn’t come in right away, so bottle feeding commenced to supplement, 60 ml every 3 hours was the standard here for the first week, and about 80 the second week pretty consistently – Breastfeeding was hurting really bad, so we went to a lactation specialist on day 7. Mom started on Motilium as milk wasn’t coming in that great after a week, as recommended by the lactation consultant. Lactation consultant also checked for a tongue tie (as breastfeeding felt almost identical to our first child, before she got her tongue tie clipped). Both boys appeared to have a posterior tongue tie, and had a clip done under their tongues to try and allow their tongues to come out better and improve their suck (from more of a biting suck, to a fluid suck). Breastfeeding was immediately better feeling, but then as days went on it degraded more and more….oh ya, and they were on Similac advance ready to serve formula for the first week….and then the saga begins.

Week 2 – 4 – Moved to Similac concentrate (same exact brand and type, just mix the cans with an equal amount of water, and it saved us probably 50% on the ready to serve). On week 2 breastfeeding became better after the clip as mentioned, and milk came in pretty good with motilium, but still needed to supplement with formula (they just couldn’t get enough). Ethan had a second clip done at 4 weeks from the lactation specialist (the tongue still felt tight to the lactation specialist, and she said his suck wasn’t that great, we might not have been ‘sweeping’ under his tongue well enough, or he just didn’t get clipped enough the first time). Logan didn’t need a clip at 2 weeks, as she said his suck seemed ok (pretty much fluid and not biting), and most of their problems now will just be related to their high pallet – which will get better over time they said. They were starting to get a little hard to feed at this point, giggling or walking around and ‘shushing’ was needed to start on the bottles, they would fall asleep after a couple ounces, and we could give the bottle another jiggle and they would such some more and continue, and then take in another couple ounces (dream feeding). Their weekly average intake was around 450-600 ml for these weeks (pumped breast milk and formula), but this was with breastfeeding on top of it all, so who knows how much they really got – assume it was A LOT, as pumping normally produced 75-150ml on each side depending on the time of day.

Week 5- 6 – Breastfeeding got so bad (painful) that we took them to a different lactation consultant (one with more experience, and the same one that we took our first one to when she had problems). She checked them and said they were very tongue tied, very tight to the bottom of mouth….and did the ‘most aggressive clip advisable’. This looked like little triangles under their tongues, about 1cm wide. Breastfeeding improved for about 2 days, and then became very painful. Bottle feeding was about the same, difficult to administer – about the same intake as it was in weeks 2-4.

Week 7 – 8 – three days after the ‘aggressive’ tongue tie clips, treatment for thrush began (they didn’t have the white spots in their mouth that is associated with thrush sometimes, but it was based on moms symptoms – shooting pains in breasts), doctor thought the feeding difficulties were related to thrush. Thrush medication was not effective, stopped breastfeeding after this, and only pumped – too much pain. Pain continued in pumping, and mom was now diagnosed with Raynauds syndrome, got drugs for it, pain went away after a couple days, and pumping was fine, but nursing still caused pain (probably due to the boys not being all that great at nursing – biting more than sucking properly). Quit nursing – else mom would have gone insane. The boys had dropped from eating about 350-400ml a day by this point, and as soon as we ended the breastfeeding and went 100% bottle, intake increased dramatically.

I’ll stop now and explain this all a bit – through the first 8 weeks, getting them to breastfeed was ridiculously difficult – took sometimes up to 20 minutes to get them to latch (with them loosing it a lot of the time), and when they did, they would push off after a little bit (3-4 minutes), scream, cry, we then would have to calm them down, and try again. It progressively got worse and worse. The bottle feeds that we supplemented them with were 100% easier than the breastfeeding (still took some work, but nothing like trying to breastfeed them) – which also led to the decision for cancellation of the breast offerings to these 2 dudes. I should also mention that by 8 weeks that had almost doubled their birth weight – 11.5 lbs each, so all in all we thought things would get better with bottle feeding. Well – they didn’t as it would turn out.

By week 8 they had slowly but surely also started refusing the bottles more and more, and we suspected a milk intolerance had been building in their system causing the refusal of the formula (they had ridiculously bad gas by this point as well), so we swapped to similac sensitive by week 8 thinking it might be a sensitivity to the formula (their farts were like a sour gas leak from a refinery to give you a better idea of this). This formula worked for a couple days (we thought we had found the magic bullet). They started taking in 500-600ml at this point, so a far cry better then the 350-500ml in the recent previous weeks. They loved this formula (or so it would seem). They peaked out at eating 700-800 ml a day for weeks 9 and 10, but we worked HARD to get this in them, we had to resort to swapping the soother out for a bottle, wetting their lips with Oval, giggling, sleep feeding etc…etc…. We stuck this formula out for 3 weeks (see below at 11 weeks where we swapped again).

By 9 weeks old we explained what was happening to Dr. and were prescribed Zantac. I should also mention that there was pretty clear symptoms of reflux, not a lot of puking/spit up (the odd full bore projectile vomit, and spit ups every couple feedings with a burp), coughing, choking, and waking from sleep all of a sudden screaming blue murder (looked like silent reflux, vomit up their throat and swallow it again, and then lose their minds). The Zantac worked for a bit, and the feedings went up, fussiness and crying went down, and then about a week later it stopped working, so we got a dosage increase, and this didn’t work worth a damn.

Week 10 was a blur, but the feeding charts we maintained showed a massive drop down to 500ml a day.

Week 11 was something we could definitely remember, as we had so much hope for this new tactic. We swapped in desperation to Similac Allimentum (hypoallergenic formula), as we heard of it working for others in our situation. We were struggling with getting them to take more than an ounce in a feed during the day, 2-3 at night, so this had to be the right solution. Again, we had a couple of good days with the new formula, and then back to the bad habits. Makes us wonder if we should rotate between 4-5 different formulas, changing them out from one to another every couple days – although we never did follow through with this plan on advise of the boys doctor.

Week 12 about 4 days after starting the Allimentum, we got in to the see the Doctor again, and got prescribed Prevacid, it was a low dose (that we ignored based on our reading of what sort of dose it takes to be effective on MARCI kids website, and infantreflux.org). I think they said to give 1.5ml a day or something stupid. The Prevacid compound was a 3mg/ml concentration, and we gave them 2ml 3 times a day to start with – it seemed to really take effect and help for the first few days (probably all just in our minds though as we really wanted things to improve). Went back to the Doctor after 5 days of Prevacid to get it increased (as we were running out of the bottles that were intended to last us 2 weeks), and got a recommendation for a pediatrician, and booked ultrasounds. I should mention that all the silent reflux symptoms are still prevalent at this point, almost textbook from what we’ve read.

Week 13, went for an ultrasound (abdominal) and an ultrasound for pyloric stenosis – both boys came up with no problems as a result (happy about this, but it was a bit of a disappointment in a way – not knowing what is causing the problems is frustrating). Week 13 was actually a good week in terms of intake of formula, up at the 700ml mark on average per day, but still a pain in the a$$ to feed them, and daytime feedings whilst awake low (I think we just got REALLY good at dream feeding).

Week 14 I think we started to become zombies, and weren’t trying so hard to get them to eat (it was tiring), formula intake down to the 600ml mark for this week, still same issues with feeding, still reflux symptoms, but we did see some small improvements in the reflux symptoms at this point.

Week 15 has been 100% better, but week 15 started with them having about 2 weeks of Prevacid complete, so we think it’s really starting to take effect. I should also mention that we are dosing about 3.5ml twice a day now of Prevacid (which seems to be working for them), and it’s a 3.3mg/ml concentration. Administering the Prevacid is completely ridiculous, first 2 weeks was like trying to make someone without teeth crunch on a carrot. We tried very small doses with the syringe (like 0.25 ml at a time in the corner of their mouth) and they just will not take it straight. We probably had 7-8 instances where they lost it so bad they had Prevacid coming out of their nose. You could definitely hear when they swallowed it the ‘belly bomb’ from the sodium bicarbonate buffer in the mixture, and I think this is what freaked them out the most.

We had our pediatrician appointment yesterday afternoon – about a week ago I said that I’ve never looked forward to a doctor’s appointment this much in my life – getting in with a pediatrician requires a referral here, and getting in within a week is even more difficult (probably because our doctor put a rush on it for us). Yesterday though, things don’t seem all that bad, we think we have the reflux under control with the Prevacid, and now we’ve moved on to working them up to sleep through the night better. We had them both on the main floor of our house, and would take shifts watching both of them. Mom would go to bed between 8-9pm, and dad would take the first shift until sometime between 1:30am to 3:30am, and then swap – this worked well for a lot of nights, and ensured we got sleep that wasn’t interrupted (all that much). When it didn’t work out so well was when they both woke up at the same time. About a week ago (after a really bad night of dad not being able to handle both kids, and they both escalated by 4am to losing their minds because you can only hold one kid at a time) we decided to split them up and each of us takes a kid – less uninterrupted sleep, but it has been working WAY better (less anxiety about the 2^nd kid waking up whilst feeding the first one).

Today we are at the end of week 15, and this week has been the easiest in terms of administering the Prevacid – we had really good luck putting the dose in a bottle with a small amount of apple juice to trick them, or mixing with gripe water (prime ingredient being sodium bicarbonate, so this shouldn’t be an issue). But they caught on to these tricks after a few days (and it was really hard to give this to them when they weren’t hungry). Pretty hard to make a baby drink something after eating just 2-2.5 hours previous so that they would have the half hour to an hour wait while the Prevacid got absorbed before we fed them their regularly scheduled feeding at 3-3.5 hours. Feeding got a lot easier this week, no jiggling, they seemed hungrier (which is probably what helped the most), only had to wet their lips a few times to get them interested – all in all things have improved, except for last night – feedings were really difficult, sleeping wasn’t happening, and we think it was due to resorting to mixing the Prevacid compound in with ½-1 oz of formula rendering it useless – has to administer the 3.5ml dose via syringe while they were losing it (and you could hear this big reaction in their bellies, and then massive burps afterwards, and then there was calm for a bit – but almost feels like back to square one with the feeding issues).

Any ideas ?

[hellbennt]

heading out of town!

I’d love to help! & I will!

PLEASE READ EVERYTHING YOU CAN!!!

PROPERLY compounded prevacid CAN be given w/ formula! you MUST either buy ‘the products’ OR TELL phrmacist exactly HOW to compound it- it’s in Prevacid 101!

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

Gripe water:

https://www.infantreflux.org/forum/forum_posts.asp?TID=3438

I have a LOT to say and most of it’s here, in a link called ‘groupie intro.’

it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

rather than gripe water or colic calm, maybe try probiotics?

I think if you would like to pursue the ‘colic’ route, then read here:

Wondertime article, Colic Solved:

http://web.archive.org/web/20101226170946/http://wondertime.go.com/learning/article/interview-colic-expert.html

page 2 of the article tells what probiotics help babies

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

hellbennt2012-11-23 12:09:30

[Anonymous]

We’ve been reading through this site for a couple of months now, and the MARSI kids site. We actually printed off the information meant to give to your doctor from the MARSI site and gave it to the boys family doctor – it’s largely why he allowed a larger dose of Prevacid we think (he started us off really low – like 5mg total per day – which was useless).

We’ve been using probiotics for about 2 weeks – after reading about how reduced stomach acid results in needing to supplement with probiotics – about the only one we can get here in Canada easily is the Bio-Gaia stuff ($30 for a one week suply with twins) – seems to be working on Ethan now (no more 6-7 days between hard poops, no more suppositories after he pushes and nothing comes out! Now we have the opposite problem, he has 1-2 soft ones a day). I haven’t had a lot of time to research this probiotic stuff….really just spent more time on PPI’s lately.

As far as the Prevacid, we are on a dose of 3.5ml twice a day, compound is 3.33mg/ml, so they get 11.7 mg per dose, so 23mg per day each kid. Not exactly as high as we’d like, but I think it’s finally working – after 2 weeks it kicked in, and even though we had a bad night a couple days ago – it might have been due to the compound loosing effectiveness (it was 1.5 weeks old when we had the bad night) We just got a new batch yesterday, and it seems to have kicked in this morning like usual, so it’s so far, so good. London drugs will not do a compound of 16.8% sodium bicarbonate, they will only do 8.4%. They did give me flavoring on the side, but like 4ml of it, so not sure how this would work (probably have to mix it with 100ml of water, and use it 50/50 with the Prevacid?). We might try that tonight – this mornings dose was given with formula, which seems to be the only way to ensure it gets in them 100%, really hoping that it isn’t a big deal to do this.

The pediatrician appointment was actually pretty useless now that we reflect back to 2 days ago – we mentioned the MARSI kids site for dosing, and how they need more frequent dosages, higher than what people might think as well, and the ped basically rolled his eyes, and said he was very aware of the site, and disagreed with it – he also mentioned the he knows GI’s that completely disagree with giving babies Prevacid. When asked why, he said something about long term use affecting calcium absorption problems. When we asked about modifying the dose given they are heavier now (2 days ago weighed in at 13.3lbs), he said we should go back to the family doctor who prescribed it to begin with. What a waste of an afternoon. The only thing he actually seemed interested in was a referal to an oral therapist for the oral aversion – even though we tried to explain that it was only bad when the reflux was bad – as long as they are hungry and not in pain, they eat really well. He thought the tongue tie clips were a contributing factor, and brushed us off with the reflux side of things. Useless.

We are going to call the family doctor today and see if he will give us a new prescription, and see if he will specify 16.8% sodium bicarbonate, 2mg/ml compound, and bump us to 15mg twice a day dose. Then we will go to the compounding pharmacy and get it filled.

Oh, and giving it [Prevacid] to them is still ridiculous, 2 weeks ago we ordered the belly buffer intro kit from the states, and it just made its way through customs (horray, only took a week to get through customs), and should be here on Monday – plan was that we hoped we could use the Part B for the flavoring to mix 50/50 with our compound here. If that fails, my inlaws are returning from Arizona in December 13^th, and we’re getting them to bring Prevacid OTC (we might mix our own compound!), and the CVS brand of mylanta cheery supreme. Maybe we should ask them to get some Zegerid OTC ? I think I saw mixing instruction w/Zegerid on the BB site….

Here are the ingredients:

BellyBuffers® Part B
Ingredients: Magnesium Hydroxide, Guar Gum, Sodium Starch Glycolate, Xanthan Gum

We’re still a bit worried that our recent trick of mixing the Prevacid with an ounce of Formula might have messed us up, so will the BB part B work for the flavoring side of the dose ?

We’re also a bit confused about whether you have to wait half an hour after giving the dose before feeding, or can you feed straight away – there is so many conflicting things on this, some say you HAVE to wait, some say you don’t. Even, as an example, on the Zegerid site (which is effectively the same thing as compounded Prevacid) it says to take on an empty stomach an hour before eating ???

From what I’ve read on enteric coated PPIs:

“The problem is, if they are exposed to the stomach acid right away, they will be degraded by the acid and never be absorbed or passed on to the proton pumps, thereby being completely ineffective. In order to get around this problem, most PPIs are given an enteric coating that will only be dissolved in a high pH environment. This coating protects the drug from the acid while it is in the stomach until it can pass into the first section of the small intestine known as the duodenum. In the more alkaline environment of the duodenum, the enteric coating is dissolved and the drug is absorbed into the blood stream and is carried to the proton pumps in the stomach lining where it begins to block the proton pumps.

This whole process takes approximately 30 minutes. “

So, questions:

1. I understand that the sodium bicarbonate in the compound is meant to neutralize the stomach acid such that the drug itself isn’t degraded when taken in orally, and thus ensures that it can reach the blood stream before being degraded – so, where does the compound form of the drug enter the blood stream (in stomach itself, or does it also need to pass to the intestine (first section) to be absorbed ?

2. And now, based on answer to # 1, how long does the process take for the compound solution to reach the blood stream? It’s not 30 minutes like the enteric coating, but surely it’s not immediate – strange that the zegerid site says to take it an hour before – I wonder why….

My wife takes Logan at night, and I take Ethan, and my wife had quite the night! Logan ate 100ml at 7pm last night, went to bed at 7:30, slept right through to 2am, ate 150ml at his wake up – went back to bed (put in the crib awake) and then woke up at 6:30am. Bloody amazing! I had feedings every 2.5-3 hours – but at least Ethan is eating more – it was 30-50ml a feed, and now he is consistently (for the past week) taking in 100-130ml a feed through he night and even some during the day like this – he;s still cluster feeding every night from 5-9pm, eating every 1-1.5 hours – which is fine as long as they stay happy.

[Anonymous]

Welcome to this site! Laura is the knowledgable one on dosage so I will let her answer those questions. My oldest boy was on Prevacid for 3 years and my younger for a year. At the time I didn’t know and wasn’t told about other med options and until I came to this site, I had never heard of Tummy Care Max and by then my boys weren’t struggling anymore.

I have done a lot of researching about probiotics so I hope you won’t mind me sharing some of what I have learned.

Probiotics are the good live bacteria (also known as gut flora) that line, coat, and protect our entire digestive tract. If a nursing mom or the baby takes antibiotics it will kill their probiotics. Also probiotics are killed by acid that comes up the esphagus and goes down into the intestines when too much acid is produced in the stomach. When probiotics are depleted then there is nothing protecting the digestive tract and it will become raw, inflamed, painful and even bleed sometimes.

Here is a copy of an article I found about babies and probiotics….

Whilst in your womb, your baby’s intestinal tract is sterile – and so its free from bacteria. From birth though, your baby begins the process of acquiring the friendly bacteria in the gut that play such a critical role in health and wellness.

How your child is born, strongly influences what kind of bacteria your child will acquire. Infants that are born vaginally begin accumulating beneficial bacteria including Lactobacillus, Bifidobacterium, Escherichia coli (commonly abbreviated to E. coli) and Enterococcus in the birth canal with the very process of birth. These bacteria form the foundations of a healthy digestive flora and originate from healthy maternal vaginal and fecal flora.

Babies born via cesarean on the other hand, receive a different mix of bacteria at birth. This comes from the maternity hospital itself, notably from nursing staff and equipment and includes Clostridium and Streptococcus.

Following birth, the acquisition of digestive flora continues until your baby is around two to three months of age with most of this beneficial bacteria coming from the mother via touch, suckling and kissing.

The way in which you feed your baby also has a strong influence on his or her digestive flora. A breastfed baby tends to have greater numbers and types of beneficial bacteria than a formula fed infant, notably Bifidobacteria, Lactobacillus and Enterococcus. These bacteria, specifically those belonging to the Bifidobacteria clan (genera) thrive in the presence of breast milk proteins and constitute up to 90% of a breastfed infant’s micro flora. They help prevent harmful bacteria colonizing the infant’s intestine.

Newborns have an immature digestive system that has never processed food. The gastrointestinal system is literally just learning to function. Muscles that support digestion have not developed the proper rhythm for moving food efficiently through the digestive tract. Furthermore, newborns lack the benevolent bacterial flora (probiotics) that develop over time to aid digestion. This explains why a lot of infants outgrow colic within the first six months.

We also found that my boys were very low on digestive enzymes. The pancreas is what makes digestive enzymes and puts them in our stomach to break down the food we eat. All foods have enzymes in them but anytime a food is cooked or processed it kills the enzymes. With our diets today of mostly cooked and processed foods it’s hard for our pancreas to be able to produce enough enzymes. Without enough enzymes in the stomach to break down the food the only thing our stomach knows to do is produce more acid to try to break it down. Too much acid in the stomach will cause heart burn, acid reflux, indigestion, irritable bowel syndrome, etc.

If a parent has a pancreas that isn’t producing enough enzymes then it is possible that their children can be born with a pancreas that doesn’t work well either. If the mother will take a supplement of enzymes and probiotics while pregnant she will pass these on to her baby and have a baby with a healthy digestive system.

For my children, a supplement of digestive enzymes and probiotics helped them tremendously. What we use is called Digestive Health sold by Core Health Products. It contains 13 different strains of probiotics in it and over 20 different types of digestive enzymes and also some soothing herbs prebiotics which are food for the probiotics. The company is based in the US here but they will ship to Canada. For 60 pills it costs $30. For some babies, 1 pill a day is enough but for some they might need more. I know of someone in Manitoba that orders these pills in bulk and sells them to some of his friends and family. I am quite sure that he would be willing to send you some to try and your shipping would surely be less. If interested, I will contact him and ask him about it.

When first taking probiotics there can be some adverse side effects. It is called the Herx Reaction. Here is an article about it.

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

What Is The Herxheimer Reaction?

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

Also when first taking enzymes they can cause the build up of indigested proteins to be broken down and the way to get them out of the system is gas! But it normally only takes a few days!!

Well, I hope I haven’t given you information overload! Feel free to ask any questions you would have!

[hellbennt]

the PROPERLY compounded meds -(or the meds w/ belly buffers, or zegerid or tummy care max, etc) CAN be given with formula, no worries!

look around this site- the Medicine Forum, the ‘stickies’ there (posts that re ‘stuck to the top’), Prevacid 101, etc. You’ll see

[Anonymous]

Well, we thought we found the solution on the Prevacid – compounding pharmacy made us a solution that the boys would actually take without spitting up, they said they have never had a problem with stability, and have really good results using the Prevacid solutabs (I don’t think the other pharmacy was using solutabs). It does have flavoring, and our boys take it much better than all the things we have been trying before. I’m still not convinced that it is working all that well after about a week, their pain seems to be under relative control though, but the first batch we got from the compounding place you could clearly see the little beads in it (so we think this was working well), and after about a week we decided to go to the doctor and get a new prescription to allow us to fill it again and replace what we thought was a compound that started to lose its effectiveness (we got an increase up to 12mg twice a day as well), and this new batch from the compounding place you can’t see the beads in it as much? Not sure what that is all about. First batch was like a sticky orange color and this new batch is a bit darker ?

Anyways, we’re on to focusing more on their issues of not eating unless asleep. It is the most frustrating thing ever – they are obviously hungry, but will only take in 1/2 – 1 ounce for the first feeding after they take their Prevacid (even after burping from the Prevacid compound). Doesn’t matter if they wait 15 minutes after meds, or an hour – they will only take a small amount. Almost makes us want to pull them off the Prevacid. Dream feeding is pretty much the only way they will take in anything more than 1-2 ounces. Yesterday actually they both had a really good nap in the mid-day (2.5 hours for one, and 3 hours for the other), and they both ate 6-7 ounces in one sitting (we fed them AS SOON as they woke up) – albeit their eyes pretty much closed as soon as we put the bottle in their mouth, it still was pretty amazing that they took that much. Almost wish they didn’t in a way, as it gets your hopes up.

We’re going to ask for a referral to an OT, and ped GI referral….we think the OT is the way to go now – not sure what a GI will do – they are gaining weight fine, just the most frustrating thing to have them absolutely not take a bottle unless you trick them with a soother, or rock them to sleep before they eat. It’s so ridiculous to care for twins that are constantly tired, hungry, and crying. Such a vicious cycle. We’ve decided to not jiggle them to get them to eat any more – we think that we are just reinforcing a behavioral issue with eating. They don’t like this much, and it just adds to the crying.

Any advice ?

Anyone been to an OT that helped them ?

Shelley and John

[Anonymous]

I am sorry that your little ones are still not doing so well. 🙁 I can only imagine how hard it would be to have twins in general but then to have twins with digestive/feeding problems…. that would be REALLY hard!!

We never had to use OT but I have read that it really helps with some kids but others not so much.

Have you tried digestive enzymes along with probiotics yet? I know they aren’t the cure all but might give some relief. And I know that when my children were suffering, any little bit of relief was AWESOME!

I hope you can SOON find answers and help for your little guys!

[Anonymous]

We’ve got the pro health probiotics/digestive enzymes on order – should be coming through Canadian customs shortly….we’ve also found an OT that does this sort of thing, and she’s willing to consult with us over Skype (as she’s 3 hours away from where we live). We’ll have to pay for that, and get a referal to an OT through our peditrician in the meantime. Mother in law is coming back from Pheonix in a week and she’s bought the Prevacid OTC there for us – we’ve got the buffer babbies in hand ready to mix our own as well – we’re not giving up, and we’ll continue to try everything we can, but we’ve basically accepted the fact that the best thing for us is to accept it and the only real cure for us likely time to pass.

It was nice to hear our family doctor tell us last week that if we can get through this, we can get through anything.

[Anonymous]

To bad your mother-in-law couldn’t have gotten the probiotics and enzymes while here too. The company is based in and ships from Mesa, AZ and I assume when you say she is in Phoenix you mean AZ? Anyway, glad you could get some and hope they help at least a little. Just don’t forget that they could make your little ones worse for a day or two at first.

I’m glad you found someone to help with OT. Hope it works!

When my boys were sick I often told myself (and still do this often with other things) that rather than ask God to make my baby stop crying, I needed to ask Him to help me to be calm and know what to do. Acceptance will get us a LONG ways in life but sometimes it is really hard! I’m glad you are being so strong!

[hellbennt]

hopefully the bufferbabies will help!

please don’t be afraid to dose according to the marci-kids dosing…

(I cannot ‘tell’ you to dose on your own – this is a decision you must research for yourself…)

also: look into CARAFATE

(Carafate isn’t intended for long-term use)

You must space it 2hrs from the PPI…

Carafate spacing from PPI:

okay I did a quick search and here is what I found… 3rd post down from Sheri who unfortunately isn’t on much anymore… says space it 2hrs apart.
https://www.infantreflux.org/forum/forum_posts.asp?TID=10620&KW=carafate

and read here:

https://www.infantreflux.org/forum/forum_posts.asp?TID=13904&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13876&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13875&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13866&KW=feeding+aversion

[Anonymous]

We went to a GI specialist who gave us lots of hope. It took weeks to get in. Cassie is about the age of your twins.

My ped doc was concerned that she was going to become food adverse if we didn’t get the reflux under control. Instead, Cassie seems to comfort eat. But if the food adversion is caused by reflux, a GI doc might be really helpful. It’s only been a week since we saw ours, but we are starting to see some improvement in Cassie’s symptoms. She’s waking only once sometimes twice a night instead of every couple of hours.

I’m glad I’m not a shy person. I’m finding I really have to push at times to make sure that her symptoms aren’t dismissed.

[Anonymous]

What did the GI do for you ?

We had our OT meeting last night, we showed her our story on this website, and send her some videos of them eating (we had a skype appointment). She definitely agreed that reflux was the cause of the aversion. She gave lots of good advice on how to avoid the aversion getting worse, and how to make a shift in terms of helping them associate eating with a pleasant experience. We think the pain is under control now, we even had the one that is worse (Logan is the one that spits up frequently) start to not throw up his meal at all in the last couple days (still spit up, but not a lot, just small amounts), and he went 7 hours last night sleeping between feeds! So we definitely think their reflux symptoms are not worsening. But that might also have something to do with the sleep training we started 2-3 days ago (crying it out has actually worked, and they are learning to self soothe).

But, what the OT helped us understand last night was how to shift our mindset from being one of ‘I must make sure they eat enough’ to ‘we need to watch their cues and listen to them’. If they don’t want to eat don’t ‘force’ it. If they cry at the bottle, don’t keep trying. If they turn their head away, don’t follow it with the bottle in their mouth. Basically, if they give any sign that they don’t want to eat, listen to that sign 100%.

She wasn’t suggesting we let them starve (because if we did this for every feeding things wouldn’t be all that great in terms of daily intake), but she just wanted us to introduce one or two feedings a day where we are consciously trying to make the feed less about feeding, and more about a pleasant/bonding experience.

Seeing the pediatrician today again….hoping to get a referral to a GI, and to an OT (so that the OT will be covered by gov’t health care).

[Anonymous]

Our peds doc wouldn’t raise the dose of the prevacid anymore and she wasn’t getting relief. Her pain definitely was not under control.

The GI doc based on her symptoms feels that she is an acid producer and therefore we need to get her acid under control. Because the stomach contents are coming up into her esophagus and then going back down (without coming out her mouth), it’s burning her throat. Basically, we’d just be starting to make progress on her comfort level and she’d gain weight and the meds would be ineffective again. This means that her throat and stomach don’t have time to heal before the medicine loses it’s benefit. He put us on a different medication and he upped the dose.

So instead of starting low and trying to keep up and never succeeding, he put her on a dose that’s more than she needs right now to buy her some time to heal which he said can take a long time. She should be able to gain 3 lbs now before we need to adjust the medicine. That should get us maybe 2 months to heal.

What Cassie does when she’s in pain for reference: She arches her back and goes stiff, she cries while eating, she’s at times inconsoloable an hour after eating, she wakes frequently or at least cries out during her sleep (not a coo – a cry that sounds like she’s uncomfortable), she can’t be flat on her back for more than about 15 to 20 minutes without crying.

He told us as well that 4 months is typically the peak for reflux (so basically, it might still get worse for the next few weeks). A lot of kids begin to feel better around 6 to 9 months. Those that don’t typically outgrow it by 18 months. We’ve had hour long screaming fits daily that are not only miserable for her but impacting our well being at times. He feels that we can manage this and make her comfortable. It was helpful to me to understand the type of reflux she has (acid producer) and what helps that situation.

I think it sounds like she gave you some good advice. When Cassie screams and doesn’t want the bottle, I put it down for a bit. For her, usually she’s going to finally get hungry enough to want it and her cry changes a little bit – maybe 30 minutes to an hour later she wants it.

I haven’t had to do the self soothing or crying it out with Cassie. I had 24/7 duty when my hubby had the flu. I started by putting her in the swing while awake and me still touching her, then just sitting in front of her talking to her, then sitting where she could see me, then finally just walking out after putting her down. The only time it doesn’t work now is when she’s hurting. It definitely helps to be able to tell when it’s reflux vs I don’t want to go to sleep. That’s a big step.

And since Cassie is eating for comfort, we’re more concerned that she’ll be eating too much which is the opposite of your issue. The GI doc thinks getting the reflux under control will slow her weight gain (on avg 2 lbs per month).

I’m really not sure what an OT is, in the states the next step after the peds is the GI doc.

So excited for you that you got a 7 hour sleep! YEAH!!! Don’t get discouraged if it doesn’t happen every night and there’s some back and forth for now. For Cassie, we have good nights and bad nights. I cherish those good nights. 🙂

Edit to Add: And when Cassie is struggling, she eats smaller amounts more frequently. So she might eat an 1 or 1.5 oz every hour or two rather than 4 to 6 every 3 to 5 hours.dmariehill2012-12-12 10:42:37

[Anonymous]

What meds did she go on ? What dose ? Ours are now on 12mg twice daily of Prevacid.

OT – Occupational Therapist – more for the behavioural side of things, the ‘hard wiring’ that occurs in their heads associating eating with pain (even when the pain is gone), which can be hard to break that connection they have formed.

[Anonymous]

I wondered if that was what OT meant! I need to trust myself more. 😉

He put her on Nexium. She takes 10 mg twice a day.

On the Prevacid she was on the 15 mg solutab, using 3/4 of a pill a day. It helped but didn’t fully resolve it and once she hit 11 lbs, we were back to miserable. She was helpful though and had one of her meltdowns in the docs waiting room. Every single person in that office, including the doc, heard her. lol.

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