Help- Twins with reflux

[Anonymous]

Hello,

This is my first post here and I wanted to see if anyone could have any suggestions.

We have 10 week old twins (Boy/Girl) who have developed acid reflux. For history, our first son, now 3.5yrs old had reflux and projectile vomited 3x day for 15 months before it resolved itself. His started the day he was born. We had prayed that our twins wouldn’t get reflux but here we are.

The first 5 weeks for the twins were great. They had no signs of reflux. No pain, no crying, ate really well. Slept well.

Around 6 weeks, everything went down hill.

Twin Daughter:

• Smaller of the twins
• Eating alumentum formula now after my wife did some formula/bm for a few weeks.
• Tried switching to Neocate last week but water viscocity was a problem. Projected vomited every feed for the one day we tried it.
• Went from eating 5 oz down to 2 oz if we are lucky.
• Takes 1.5hr to get 2 oz Alumentum in her
• Doens’t suck bottle anymore. Only chews on nipple. Sometimes we are forces to put a #3 nipple on the bottle and basically drip it into her mouth.
• Sometimes takes 1 hr to give 1/4 oz. Often just won’t take anything.
• Crys the whole time when she feeds. Non-stop stuggle to get her to eat. At times, we need to restrain her arms to get her to take antyhing.
• Passes gas often
• At times (1x day) projectile vomits now which just makes that much worse.
• She was on 7.5mg prevacid solutab 2x day. Most of the time didn’t do anything as far as we could tell. Strangely, 1 out of 4 days they seems to settle down, the others are hell. Wife and I were maticulous with getting the bb’s of solutabls down her throat. On on occasion, we say the bb’s, nowpurple come up with throw up one time
• Switched to Nexium powder, 10mg 2x day. Very hard to get the thickened mixture into her. She has been on this for about 5 days with no noticible improvment
• Added Carofate 2 x day, 4hrs away from Nexium. Doesn’t seem to make a difference.
• Inconsolable crying for hours with nothing that can help her.

Twin Son:

• Eating Alumentum formula now after my wife did some formula/bm for a few weeks.
• Went from eating 6 oz down to 3-4 oz..
• Takes 1.5hr to get 3-4 oz Alumentum in him
• Crys the whole time when she feeds. Non-stop stuggle to get her
  to eat. At times, we need to restrain her arms to get her to take
  antyhing.
• Loose stool, almost every diaper change it diarrhea.
• He was also on 7.5mg prevacid solutab 2x day. Most of the time
  didn’t do anything as far as we could tell. Just like my daughter, 1 out of 4
  days they seems to settle down a little, the others are hell. Wife and I were
  maticulous with getting the bb’s of solutabls down his throat.
• Switched to Nexium powder, 10mg 2x day. He has been on this for about 5 days with
  no noticible improvment
• Added Carofate 2 x day, 4hrs away from Nexium. Doesn’t seem to make a difference.
• Very hard to burp him. Leads to excessive feedings.

We don’t like the Nexium by the way because it makes them sleepy after they take it.

The GI doc has told us that there is not much more they can do for us if the switch to Nexium doesn’t help. He said they are/were on the max dosages of Nexium and Prevacid mentioned below. He would not increase dosage.

Are there other options here. My wife and I are at our wits end. My poor wife cant’ basily leave the room given 1.5hr feedings each and a feeding every 3 hours. At times, we need to walk away from the crying for a few minutes because it’s torture to see them like this and having nothing to help consol them.

We really need help and don’t know what else to do. We hired a night nanny to help us at nights. She had been specializing in twins and trips for 17 yrs and told us our kids are the worse she has ever seen.

Are there any good docs to see in the Connecticut or Westchester NY area? Something needs to give, we can’t keep this up and need help.

Do you think higher dosages would help if we could find a doc?

Please help,

Joe

[Anonymous]

I am so sorry your LO’s and you are going through so much. I am not the expert on reflux but I can say there are other options as far as meds and formulas. It can take some time and some trial and errors to find the right combinations. Also know it can take up to two weeks to see any difference. So as hard as it can be you need to give any chance at least 2 weeks.

Other formulas you can try are Elecare and Nutramigen. They are hypoallergenic. Your son sounds like he is having a formula issue because of the BM’s.

As far as medications….there are H2 blockers that can be added to the current meds…they decrease the acid production in the stomach. It won’t stop the vomiting but it will make it less acidic. zantac is a popular one to use but there is also pepcid, tagament and axid.

You might have to also try them on a different PPI other than Nexium. There is Prilosec and Zegerid. Zegerid has a fast acting and long acting ingredients in them.

I am not sure about the dosing, I don’t remember how to calculate that, so if they are on the highest dose, changing GI’s won’t make a difference in that, however…if you can find another GI I would go get a second opinion. Every GI has their way of treating things, so what one does…another may not do. At least that way you can maybe get a different opinion that may work for you.

Make sure you are also keeping them elevated after feeds and while they sleep. Some parents end up having to let there LO’s sleep in car seats, swings or bouncy chairs because it is the only way the babies can sleep.

I would maybe start with the formula, but you also have to give a formula change a couple of weeks as well and you may end up giving them each something different.

I hope things get better for you.

[Anonymous]

Thank you for the good tips. I also failed to mention that my daughter has consitpation issues (4 days between BM). We recently added pear juice to help loosen her up. We shall see how well that works.

I agree about a second opinion. We’re seeing follow up GI Dr next week. I didn’t realize that it takes 2 weeks for any formula or drug to kick in. I will keep that in mind since we switched nexium only a week ago. I will also ask them about adding an H2 Blocker on top of the PPI.

Thanks again. I hope we can come up with a good plan when we meet them next week for the follow up.

Joe

[Anonymous]

I hope you find a good plan too. GL

[hellbennt]

sorry so late responding!

I have a LOT to say…most of it is found in Groupie Intro

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

and also Prevacid 101 (there’s nexium dose now listed from the link called marci-kids dosing chart)”

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

for the one having trouble pooping, try some

mylanta cherry supreme? it’s the one variety of mylanta that does not contain aluminum. it’s hard to find, but you can find store brand equivalents try rite-aid, cvs brand, walmart, target, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.

this must be given 4 hrs from the nexium

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

there’s so much! but you can do this! research all you can & continue to advocate for your babies!

about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES 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

ALSO:

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

there are recommendations for ped GIs in your area…

[Anonymous]

I’m so sorry you guys are struggling! Nutramigen and Alimentum or both hydrolysate formulas, meaning that they are milk based formulas made up of partially broken down protein chains, making them easier for babies to digest. However, some more sensitive babies still cannot handle the partial protein chains found in hydrolysate formulas and end up needing an elemental formula, like Neocate.

I know you said your daughter was on Neocate for a day and did not do well. A formula change can be hard on a LO, did you try transitioning her onto Neocate or did you switch cold turkey? I would try going slow with the formula switch by adding only 1 oz of Neocate to 3 oz of Alimentum, and then slowly increase the amount of Neocate until you reach 100%. And then once you’re at 100% try to stick with it for two weeks before switching again. It takes time for your LO to adjust. And are you currently using Alimentum powder? I have heard other parents have had success with Alimentum RTF.

I will also add that you may see a chnage in stool consistency and stooling pattern when transitioning to an elemental formula. Often times you will see a decrease in stool, and that is because the formula is broken down to free amino acids, with no protein chains to break down, and the amount of time it takes your LO to produce enough waste product for a bowel movement is longer. This may be a welcomed change for your son.

You also mentioned that your daughter is having trouble with constipation so you’ve added pear juice to her diet, speaking only from personal experience, since my LO has multiple food intolerances, he has never be able to handle pears. It seems so strange because pears are low on the allergy list, but I think they are too acidic for him? Just something to consider when adding things to their diets.

I hope your LOs start feeling better soon!!!! Hang in there, you guys are doing such a great job trying to figure out what’s best for them.

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