Posted By Posting
Nov 23, 2012
jhilliker
3.5 month old twins - will not eat - difficulties with Prevacid
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 2nd 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 -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 ?
Nov 26, 2012
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Your story is an excellent example of why most of us refer to "the reflux roller-coaster." It can take a very long time to puzzle everything together, from triggers to medication combinations that work, and then, just when you get it figured out, something changes and it's like you know nothing about treating your little one's reflux. So often, there are many things going on which exacerbate the reflux -- from food allergies, to sensory sensitivity, to teething....on and on, any stressor has the potential to send a refluxer into a tailspin.

When you refer to going to the pediatrician, are you seeing a general pedi, or a pediatric GI specialist? The benefit of a GI specialist is that they are typically up on the latest diagnostic and treatment options, whereas many general pediatricians are not. When conventional treatment is not helping, it can be helpful to seek the advice of a specialist. How is their weight holding up?

With regard to sleeping better at night, best of luck to you. Until reflux is under control, sleep is usually one of the first casualties, and since I wish someone had told me this from the start, I will tell you -- reflux can cause sleep apnea, so it's wise to educate yourself about the symptoms of it in infants (congested breathing or snoring, gasping, frequent wakings, sweating, insomnia, among others) and report any suspicious observations to your physician right away. Reflux can also be exacerbted by and/or lead to sensory processing issues -- the frequent pain associated with the reflux can lead babies to become overly sensitive to sensations, which causes a lot of stress on them, and in turn, leads to more reflux. Sensory sensitivity can also wreak havoc on feeding, especially if it is combined with reflux and allergies.

I'm sorry I don't have any magic suggestion to help you out -- after 5 and 1/2 years, I've ceased believing that I have an great answers -- but I do have endless empathy and some personal experience with The Roller Coaster.

Check with your
doctor first!