Triplet Son has reflux (new member)

[Anonymous]

First time posting here. I’ve posted on other forums (babycenter, inspire.com.) about my son, and gotten good advice, but looks like people here “specialize” in reflux. Here’s his bio:

My son is a triplet born 28 weeks and weighed less than 2lbs. Currently he’s 7 months
actual, 4 month adjusted. Current weight: only 9.5 lbs.

He’s been eating less and cries at almost every feeding (except night feedings). At his best he was eating
90 ml/3 ounces per feed. In the last month, he eats between 30-80 ml per
session. The minute we sit him up, put on a towel, and put a bottle in his mouth, he cries. He cries
at times before, during, and after feedings. He used to arch his back, but no longer.

Note: at times, my wife has resorted to “forcing” him to drink.

On a bad feeding session,
he’ll nibble 30-40 ml, stop, cry, and refuse to eat anymore. We wait, try again
10-45 minutes later; he may eat another 20-30 ml, or
not at all. If he ate only 30-40, we try again in 2
hours.

If he ate 60ml/2 ounces, we try again in 2.5 to 3.5 hours. Sometimes he wont eat till 4-5 has gone by, which by that time he is hungry and fussy.

Sometimes he does not cry, but just plays with his
nipple, rolling it around his tongue, thrusting it back out. He would also nibble, like nibbling on a pacifier, but not “suck” and draw out the formula.

Note: we will be seeing an OT to see if he has mechanical issues.

On a good “good” feeding session (usually when he’s asleep
and not crying) he’ll drink 60-90 ml in less than 15 minutes. In order for him
to drink this amount, we have to constantly rotate the bottle, gently tug
bottle in and out of his mouth, etc. After 15 minutes though, he shuts down. No more sucking, just playing with the nipple, AND he raises his tongue to the roof of his mouth and BLOCKS the nipple. WTH?!

We’ve experimented with different nipples, definitely medium
flow–maximize the flow without chocking him. Slow flow is too slow. Currently using evenflow slow flow
nipples (which are more like medium flow). Also tried Dr. Browns level 1 (no
go) and 2 (ok) nipples.

On average he eats between 350-550 ml per day. Since he eats
better at night (no crying), we dream feed him at 3 am and 6-7 am. And feed him whenever he’s asleep–within 2 hours from last feeding.

Met GI Dr. for the 1^st time last week, and he said
that although our son small (9.5 lbs), he’s not super skinny or emaciated. I
asked about tests (DGE, Endoscope, Upper GI, barium, etc.) he said NO tests for now. We’ll see him in another month.

He did prescribe Zegerid packets. Have not given it to him yet, and don’t recall the dosage.

The only medication we’ve given him is Ranitidine,.5 ml, 2X,
sometimes 3X per day.

Son is also taking LACTULOUSE due to constipation (round
hard balls diameter the size of a quarter). GI Doc thinks this will help him with his appetite.

Stools: usually green color, no mucous, no blood.

No skin rashes.

Formula: we’re on Neosure, 22 calories. Have NOT tried any other formula
because my wife, pediatrician, and GI Dr. do not believe he has a milk allergy, and at times he’s taken 2-3 ounces with no problem. I’ve tried giving him Alimentum but it was on a “bad” feeding day, and we have not tried again.

We have not tried other formulas also because on some “good”
days my son drinks the 3 ounces with no problems.

Spit up: used to spit up daily with some projectile
vomiting. This has mostly gone away starting with his 3^rd month. Now, he spits up 2-3X per week, usually if he eats too fast, if we don’t stop to
burp him.

He still gags, chokes, and coughs and has the occasional wet burps.
Sleep wise, hard for him to nap. Takes 2 naps throughout the day lasting
anywhere from 30 minutes to less than 2 hours. At night he sleeps from 11:30 pm to around
7, 8 am. Wakes up once or twice a night, but usually falls back asleep using a
pacifier or rocking him in our arms.

Any help is greatly appreciated.

[Anonymous]

WOW!! I like all your detail! You sound like a true advocate for your child and want to do all you can to help him!!

Few children have a true milk allergy. Normally when allergy testing is done, the test comes back negative to milk. What many children have (like mine) is called a milk intolerance. But I decided to search that further and see if I could figure out WHY they couldn’t tolerate milk.

My children screamed in pain for hours, were on antacid meds, drank special formula, had bloody stools, and had very bad reflux.

I have written up my entire story of what all we went through and what we found to help and created a blog (see signature). It is my goal to be able to help other parents find relief for their children like we found for ours. Although I can not promise that what helped mine will help yours… it does seem to me as if your child would benefit. On my blog there are several stories of other children who were not eating enough that have been helped with what helped our children. Here is link to their stories…

http://help4acidreflux.wordpress.com/lorraines-story/

http://help4acidreflux.wordpress.com/federicas-story/

http://help4acidreflux.wordpress.com/others-stories-of-finding-help/

The thing that we found to help our children the most is a supplement of probiotics and digestive enzymes.

When my first son was a baby and suffering severely from digestive problems, the pediatrician recommended that I give him probiotics. I knew very little about them and hardly knew what they were. I did try them though but they didn’t help him. When my children were ages 2 and 4 I called a nutritionist that someone recommended and he explained very plainly what probiotics were and his main focus is digestion. I have since learned a ton from him.

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.

Probiotics (also known as gut flora) are the good live bacteria that line, coat, and protect our entire digestive tract. People with digestive problems are often low on them. This can be due to several reasons but one of them can be if the person has taken antibiotics. Antibiotics not only kill bad bacteria but the good also. When a person is low on probiotics, their esophagus, stomach, and intestines are left unprotected and can become raw, sore, painful, and even bleed sometimes. So by taking a good quality probiotic supplement, you can build back up your probiotics and have less digestive problems.

When looking for a probiotic supplement, look for one that has at least 10 strains of probiotics in it. Many brands have no more than 4 or 5. Some only have one.

There are powder forms, capsule forms, refrigerated ones, etc… I believe that stabilized (meaning they don’t have to be refrigerated) work better than refrigerated ones because if they have to be refrigerated to stay alive then how long will they stay alive in our bodies? But many people like the refrigerated ones so the bottom line is that they work. If you don’t get results with them, then try different brands until you do.

It is also really beneficial if the probiotics have prebiotics in them. Prebiotics are nutrients that that act as food for probiotics. They help your body to make more of its own probiotics.

Another extremely important thing I learned about from the nutritionist is digestive enzymes. Digestive enzymes are what play a major role in breaking down our food. All foods contain enzymes in them to break down the food but when a food is cooked or processed, the enzymes are killed. But our pancreas also produces digestive enzymes and places them in our stomach to aid in breaking down our food. The bad problems is… that us Americans eat a diet of mostly cooked and processed foods. For many people, their pancreas gets tired and wore out from making so many digestive enzymes that it starts to slow in production.

It is also possible for a baby to be born with a pancreas that that doesn’t produce enough enzymes. This can be an inherited problem.

When food enters the stomach, the stomach excretes a small amount of hydrochloric acid to activate the enzymes in it to start breaking down the food. If the food contains no enzymes and the pancreas produces very little then the only thing that the stomach knows to do it excrete more and more acid to try to activate enzymes. Because there is such an excess of stomach acid then it can be forced up into the esophagus causing heart burn or acid reflux. And it can also be forced down into the intestines causing many problems there too. This excess acid also kills probiotics.

When there are no or little enzymes in our stomachs to break down our food we wind up with undigested food. This undigested food is them forced out of the stomach and into the intestines. While it is sitting in the stomach it can cause bloating. And beings it isn’t broken down properly then it can cause constipation for many but diarrhea for some.

So by taking an enzyme supplement it could most likely help break down the foods your child is eating better.

When looking for an enzyme supplement, look for plant based enzymes. Some people recommend animal (or pancreatic) based ones and from my understanding, the animal based enzymes (derived from an animal pancreas) are maybe stronger than the plant based ones and so therefore might have more instant effect. But beings animal based enzymes are the same kind of enzymes that our pancreas produces, then our pancreas can become dependant on them and completely quit producing its own enzymes at all. Whereas the body recognizes plant based ones as food and instead of the body becoming dependant on them, they can enable our pancreas to start working better on its own.

How to find good quality enzyme supplement? Look for plant based. Also a digestive enzyme formula should include the full spectrum of enzymes necessary to break down all types of foods completely. To completely break down a food, all the enzymes for each component of the food must be present. This means that a digestive enzyme formula should not only include the major enzymes (e.g. protease, amylase, lipase and cellulase), but the formula should also include the enzymes for the next steps (e.g. peptidase, lactase, glucoamylase and malt diastase).

Where to find good quality probiotic and enzyme supplement…. I doubt stores like Walmart will have them but I believe you can find them at whole food stores, raw food stores, etc or on line. A lot of brands will have the probiotics and enzymes separate but some have them together.

I have found Core Health Products’s probiotics and enzymes to be extremely helpful for my children and I. It is called “Digestive Health”. You can google Core Health Products to find them and then if you want to see the ingredients look under “close up” and they have them written in detail.

I am not a doctor or any professional of sort. So I am not claiming to cure or di
agnose any problems. It is possible that some of what I wrote is incorrect and any one is welcome to correct me. I have just written from my personal understanding on what I have learned through listening and researching.

[Anonymous]

I had to reply when I read your message – I could have written it myself.

I have twin boys, both suffer with reflux. I know how difficult it is to deal with a child who will not eat and still have another one that you have to care for.

My one son has developed oral aversion, and it sounds very similar to your child. He will only eat when he is tired or asleep. He cries during feedings and arches his back. He will only drink 1-2 ounces at a time now and will refuse the rest. When he is eating, he tounges the nipple too and pushes it out of his mouth.

We saw a GI spec who would have nothing to do with us since he is still gaining weight (only because we spend hours feeding him!). We have an appointment with an occupational therapist next week to see if they can help.

We switched formulas from Neosure to similac sensitive. I really want to move them to a hypoallergenic formula in case their reflux is really an allergy (they also have eczema which makes me think they have an allergy), but this formula tastes terrible and it made feeding time even more stressful. So now we manage their eczema by keeping them ‘lubed up’ and continue the sensitive formula.

He is currently on compounded 3mg/ml prevacid twice a day. I have read that the prevacid is no longer stable after 1-2 weeks so I experimented with it, and I can attest that this IS true! After 1-2 weeks, BOTH of my boys start refusing the bottle.

I asked my dr to call in an order for prevacid solutabs and this seems to help. For two days in a row my very problematic eater is doing better (not great, but much better). However, this has to be given on an empty stomach and 30 min. before a meal. This is impossible for me since I have two kids – holding them off for 30 min. in the morning makes me want to cry just thinking about it.

I have just ordered Tummy Care Max to mix with OTC prevacid to see if this will help in administering the Prevacid. I will keep you updated!

I really just wanted to offer support. I know this is a very stressful time for you.

I would definitely start the Zegerid. It’s important that you get the reflux under control. After several weeks on the zegerid, hopefully he will start eating.

[Anonymous]

Thanks Chemmom. You have twins, I have triplets. So definitely understand the timing of the feedings. We too are going to see an OT at the end of the month, to see if it’s a mechanical issue.

For forum members, regarding the Zegerid, GI said to dissolve the 20 mg packet in 20 ml of water, then feed 2.5 ml, 2X per day. Feed him before meals, on an empty stomach.

Any advice using Zegerid? First time using it, and from this forum, there’s lots of technical information as to the dosage, how to take it, when to take it, taking it with with other drugs, using the 20mg packet (which was the one given to us) versus 40 mg, etc.

Last, will also give the core health priobiotics a try. GI Dr. recommended Baby’s Jarro-Dophilus. Is this one good?

preemiereflux2012-10-11 17:47:26

[hellbennt]

hi & welcome! my computer fried so, in the meantime, i’m on a borrowed ipad from my mother-in-law. I don’t have all of my links handy, but…

zegerid: the creater of zegerid says to use the 40 mgs packets- it has to do w/ th buffers, etc. It’s explained from ‘prevacid 101’. Prevacid 101 is a link that tells all about all the PPIs, not just prevacid. You can find it by going to the medicines forum & looking there- it’s ‘stickied’ so it’s on the top.

In prevacid 101, there’s a link called ‘Marc-kids dosages’- this is from the team of researchers from the U of Missouri- they know their stuff! I’ve been on this board almost TEN years now & no, I don’t get paid by them or by anyone (well, I get paid for my job, which is an elementary school counselor! but I don’t get paid for anything reflux related- this is my volunteer work!) – I trust their research & followed their guidelines & bought their products- I trust them!! I advocate for babies & their parents!

ok go to the introduce yourself forum- look for a stickied post called ‘groupi intro’ – this page has a LOT if information. skim through it & refer back to it- it’s looOOng but it will help you!

from groupie intro, look for the MSPI link- not that your baby has mspi (milk/soy protein intolerance), but you can get an idea how reflux and allergies and intolerances all (can) go hand in hand…

look for the post called “best explanation of allergies & intolerances and their relation to reflux”

there’s so much information here!

so glad you found us!
hellbennt2012-10-12 07:31:54

[Anonymous]

I haven’t heard of Baby’s Jarro-Dophilus before now but just looked it up. They contain 6 strains of probiotics which is good compared to a lot of products and they also contain prebiotics which is good. I have read though that the best probiotics are ones that have at least 8 strains of probiotics and 12 or more is ideal. Also the Baby’s Jarro-Dophilus contains dairy (casein) and soy (in trace amounts). So if you are concerned about your baby being allergic or intolerant to milk or soy they probably wouldn’t be a good idea.

But if you do decide to try them, I would still recommend that you find some digestive enzymes to add in. I looked to see if the Jarrow company sold enzymes (a lot of companies that sell probiotics also sell enzymes). And they do. One kind is called Jarro-Zymes Plus and it contains 4 types of enzymes. But I personally wouldn’t recommend them because they are animal derived enzymes which are the kind that our body can become dependent on. They also have a kind called Bromelain 1000 and contain one kind of enzyme that is derived from pineapple and is to help digest proteins.

Digestive Health contains 13 strains of probiotics in them and over 20 types of enzymes. These many enzymes are to help break down protein, sugar, carbs, and all the different types of food we eat.

I am not saying that Digestive Health is the only brand out there that is any good it’s just that I have learned that the Core Health Products company’s main focus is digestion. They only have their 5 basic products they sell… daily vitamin/mineral, Digestive Health, Heart Health, Joint Health, and Core EFAs (Essencial Fatty Acids). Many other (not all though I’m sure) companies just have probiotics and enzymes products to add to their many other products but probiotics, enzymes, and digestion is not their main focus so they don’t put a lot of effort and research into that department.

I am sorry for all the long detail. But since finding such relief for my children who used to be so miserable, I feel compelled to learn as much as I can and do my best to help others find answers like we did.

I hope that soon you can find some relief and that your little boy will soon feel better and start eating more! Happy Mom2012-10-12 01:55:23

[hellbennt]

probiotics, brands used:

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

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

there are recommendations for ped GIs in your area…

[hellbennt]

chemmom: welcome! please keep us posted w/ the tummy care

[Anonymous]

I am happy to report that my boys’ reflux seems to be under control using OTC prevacid and Tummy Care Max. Life is good! I hate to say that so soon, but we have had almost a week of good feeds and little bottle aversion.

We had an
appt with the OT this week and they said that one of my boys is having issues
with their suck, swallow, breathe mechanism so we have several exercises to do
to help develop this along with thickening their feeds with rice cereal. We previously
had a terrible appt with the GI spec who said there was little they could do to
help us and that we were NOT candidates for OT! HA! I’m glad I didn’t listen to
them and took the initiative to try my own thing and keep our OT appt.

[Anonymous]

OH WOW!!! I am so glad you did what YOU felt was best! And I am really glad things are going so well!!!

[Anonymous]

Can someone help me with marci dosing? hellbent…Son has been on zegerid for about a week, 2.5 ml, 2 x a day. Does not appear to be working at all.

He is close to 10 lbs. Please give me an idea…

[Anonymous]

Here is the link to dosing: https://www.infantreflux.org/forum/printer_friendly_posts.asp?tid=2668

I started to panic after a week on prevacid too – even took my son back to pedi because it wasn’t working. Then after another week, I saw a night and day difference in my child (this is the twin who does not have bottle aversion, he just screamed his head off due to reflux)!!! Hang tight…give it several more days to kick in. The one with bottle aversion took a bit longer to see a difference – higher dose, thickened feeds with rice cereal and tummy care max buffer.

[hellbennt]

give it 14 days…hang in there, mama!

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