Reflux, MSPI or something else??

[Anonymous]

Hello all –

Having read these forums for some time I decided to post myself.

DS was born on 12.31.12. He is adopted, so we formula feed only. We know that his birth mother is allergic to shellfish and tetracycline. We have no info on his biological father. DS also had a “difficult” birth – vacuum, forceps, vacuum again, and his umbilical cord was wrapped around his neck twice (I’ve read some posts suggesting that hard births might be related to reflux issues due to damage to the vagus nerve.)

I won’t go into the full saga of how we pushed for a dx of reflux (I can post that at a later time), but he was diagnosed by his ped at 5 weeks, and this was confirmed by a GI doc at 12 weeks. He was dx with silent reflux and the GI doc mentioned that he might also have a possible MSPI.

DS has been on zantac since february with varying degrees of success. GI doc put him on the max for his weight (dosed according to MARCI/Reflux rebels at 3mg per kg.) He suggested that when we start to see DS exhibiting signs of reflux again, we can bump up the dose a little. For the past few weeks, those increases in dose have kept his issues under fairly ok control (wont say its GREAT, but better). In the past week, he has completely backslid, leading me to think the zantac is no longer doing anything. I also now have him on a dose appropriate for an 18-20 pound baby, even though he is only 15 pounds at 15 weeks – which further leads me to believe he has finally developed a tolerance to the zantac.

We have switched him from Gentlease to Nutramigen 3 days ago to explore the possibility of MSPI. I have not seen any improvement yet but I understand that can take up to two weeks.

Overall – DS’s symptoms of reflux have been fairly mild in comparison to what other’s have posted about, but still bother him. They include:

1. Fussing/crying/pulling off nipple halfway through eating and overall difficult feeds (however, he doesn’t do this at every bottle). We have also changed nipple sizes so he is not fussing because he can’t get enough formula.

2. Resists burping. When you DO get a burp it is often wet and has a tiny bit of spit up.

3. Hiccups after every bottle, sometimes wet

4. Constant congestion

5. General fussiness off and on through the day – however, he DOES smile and play.

He does not exhibit any of the more serious reflux or allergy symptoms. He does not spit up in volume, does not vomit, does not have bloody stool or diarrhea (his poops are generally army green and pasty and he goes once a day). He does not have skin rashes or eczema. While he will fuss and cry on the bottle, he is fine once he finishes eating (he will sometimes fuss a little but a pacifier quickly fixes that). His sleep is relatively ok (hour long naps, and will often sleep for 6-7 hour stretches at night).

He tends to also not be a fan of tummy time for long periods. He HATES his car seat – unless he is moving.

Any ideas on what this could be? Silent reflux? Formula intolerance? Both? Neither?

I have a follow up GI appointment next week and wanted to hear other opinions before then.

Thanks all!!

SIDE NOTE: I have noticed that after we moved him to Nutramigen, his wet burps seem to come more often with more formula being brought up. I’m thinking this is because this formula is significantly thinner than his previous one. Anyone else experience this? I don’t want to have to thicken his food if I don’t need to – he’s just too young for that.

[Anonymous]

Forgot to add – he does have frequent gas, and it tends to smell pretty bad.

We put gas drops in most of his bottles still, just in case he is still having some tummy issues

[Anonymous]

Brief update: On day 3 of Nurtamigen. He is fussy on bottles (not really crying so much anymore) but now is not finishing his bottles. He has religiously drained 8oz bottles for the last 3 weeks with no spit up. Now he is taking between 6-7, and his last bottle he spit up quite large once he was done. Hoping this might just be his body getting used to the new formula.

Any insight to this and my first post would be a relief.

[hellbennt]

if he’s not liking the nutrimigen, make the change slowly- it’ll take longer than 2 weeks, though to see the full results- but anyway- mix the old formula w/ the new and then slowly increase the new & decrease the new until he’s only on the new- hope this makes sense?

zantac can go up to TEN mgs per kilo, but DO NOT just take my word on this!

Zantac dosing- my/other’s question (has axid & pepcid doses, too):
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

Here’s a handy chart to convert lbs to kilos:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=3

hellbennt2013-04-10 15:25:37

[Anonymous]

Sorry – I posted so early that I got his meds wrong. He is already well over 10mg per kg. I give him 2.6mg 2x a day, for a total of 5.2mg a day. he is only 15 pounds – that is enough for a much bigger baby.

I might try to make this transition more slowly. Yesterday he was on half and half and seemed to do ok. Today he is on 3/4 nutramigen and 1/4 gentlease. Doesn’t seem to be handling it very well. He’s had a few spit up episodes and now his sleeping is erratic when it’s been solid for the last few weeks.

[Anonymous]

Here is our story on what we found to help our children. https://www.infantreflux.org/forum/forum_posts.asp?TID=16038

[hellbennt]

how is everything?

[Anonymous]

No change at all.

I don’t think the zantac is doing anything anymore because I think he grew out of his reflux.

The only change I see from the nutramigen (been on it for 9 days now) is that his poop went from green to brown and that he brings up more of it throughout the day. Not full blown spit up, more like drool. Doesn’t bother him at all. My guess is that it keeps coming up because it is so thin.

STILL fussy on his bottle. VERY fussy. Stiffens when you put a burp cloth on him. Takes the first few ounces ok and then starts to squirm and kick. Doesn’t want nipple in his mouth. Doesn’t want to swallow. Sucking funny. Struggle to get him to finish his bottle. Checked his mouth – no thrush, no teeth coming through.

Still has CONSTANT congestion. No cold, no fever, use saline and aspirator and humidifier – no change. Been constantly congested since 3 weeks old and no one seems to think its a big deal.

At this point he only has fussiness on bottle and congestion. Other than that, he sleeps good, plays, smiles, etc.

Other day I tried putting rice in his bottle to thicken it a little to see if he would keep it down. It worked. But I also noticed he took his bottle with less fussing.

That led me to think maybe this is a swallow issue – that he can take a thicker consistency better. Possibly dysphagia?????? he seems to have all of the symptoms (only fusses on bottle, eats fine when hes asleep, congestion, swallows funny/gags/sputters). Either that or we have a massive bottle aversion starting.

Have follow up appointment wednesday morning. Hopefully GI doc will actually CARE enough to examine this further. This has been going on since February and I am sick and tired of hearing “try this for 2 weeks”. FIX THIS!!!!!

[hellbennt]

TELL them he needs a Swallow Study

[Anonymous]

Took my little man for his follow up GI yesterday. Gi no longer suspects MSPI because there has not been a change (been on hypo for over a week), but wants us to continue for full 2 weeks just to see. I personally don’t think this is MSPI at all but I will humour him since I already bought the formula.

Told him that I was already increasing the Zantac based on the fact my baby gains 1/2 a pound a week, so I adjust it accordingly. He didn’t seem to thrilled , but I don’t really give a crap. I already have my child maxed out (in fact, overdosed) for his weight. Still have fussiness on bottles.

Doc mentioned that reflux DOES peak at 4 months. That’s fine and dandy and a nice bit of trivia, but doesn’t solve the issue. I insisted on a new medication since the zantac is now useless.

He gave me prevacid 15mg solutabs. He wants me to only give half a tablet (7.5mg) ONCE a day. He WAS smart enough to say it needs to be given at least 30 minutes prior to feeding.

I think this dose is extremely low. Little man is 13 pounds even and will be 16 weeks on Monday. Based on my calculations from Marci chart I found on a post here, he should be getting anywhere from 22-26mg a day, divided into 3 doses. Is that right??

GI doc would not order swallow study because he doesn’t fuss on every bottle and is gaining weight. And of course, he took all his bottles SO well that day too. And he was giggling up a storm in the docs office. Doc did mention this could also be a bottle aversion too but that he will “grow out of it” once we manage the reflux and he starts on solids. I doubt that to be true.

Time to find a new Gi. Oh well – at least I have new meds.

[hellbennt]

best EXPLANATION OF FOOD ALLERGIES/INTOLERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

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

I don’t have the dosing chart handy, but it sounds like you’re doing the calculations correctly- you convert lbs to kilos

then take the recommended dosage and multiply by the kilos

this gives you ONE dose

you give this amount three times a day…

you can buy prevacid otc and give that – get the capsules, if there’s a tablet in the capsule throw it away (it might just be the prilosec that has a tablet in with the beads of the capsule?) – so you give the capsule on an empty stomach- you give the beads w/ a /2 tsp of apple sauce and then you follow w/ a ‘meal’ 30 minutes later…

please review your dr here, and look for a new one:

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

[Anonymous]

It really sounds to me like your little one isn’t able to properly break down his food properly.

By adding in a supplement of digestive enzymes it could possible help your little one quite a bit.

https://www.infantreflux.org/forum/forum_posts.asp?TID=16038

I am not the only mom that has found probiotics and enzymes to help their little one’s digestive problems. Many many moms have found them to help.

[hellbennt]

please update!

[Anonymous]

Decided to take him off of the meds completely on the 22nd of April. He was already one week into his trial of Nutramigen. I didn’t see any change once he was off of his meds (better or worse) so decided to keep him off them for good.

Kept up with the Nutramigen untilthe 28th (about 18 days). It wasn’t until the very end of the trial that I started to see marked improvement.

Just to be sure, I put him back on his old formula, and with his very first bottle the symptoms came back (fidgety, green poop, general fussiness). Given that, I can pretty much confirm he has MSPI.

He’s now back on the Nutramigen and doing well so far – no reflux, eating fine, calm. We still have sleep issues but he has always been a lousy sleeper. There’s also some major crankiness going on, but it seems to be related to his 4 month growth spurt and not pain.

[Anonymous]

SO glad things are going better!!

[Author]

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