Screaming 2 month old not gaining weight

[Anonymous]

I’ll try to get all the details in here without writing a novel.

My first two children had reflux issues that were easily solved. Baby #1 we switched to formula that came as concentrated liquid (dilute 1:1 with water) and for some reason it helped. Baby #2 we switched to formula with added rice starch and that was thick enough for her to keep it down.

Baby #3 (DOB: Feb 1st, 2013) is entirely different. He’s a silent refluxer and he’s absolutely miserable. He screams and writhes in pain for 2-3 hours after each feeding. I say “silent” reflux because he doesn’t spit up much at all, but I can actually hear him refluxing. Sometimes he chokes on it. Sometimes he is gasping for air and making a noise that sounds like the whoop of whooping cough.

Formula we’ve tried: Similac, generic brand soy (Parents Choice, Walmart), Similac Sensitive, Gentlease, Enfamil AR (added rice starch), and for the past 4 weeks he’s been on Nutramigen.

I quit all breastfeeding 4 weeks ago when we started the Nutramigen, because the pediatrician said he may be allergic to dairy that he was getting through the breast milk. Yes I know I could have done dairy elimination in my diet, but I did not want to wait for him to get better while it cleared out of my system. I was hoping the Nutramigen would eliminate his pain, and it didn’t. He’s actually worse, because now he’s not gained any weight in the last 4 weeks. He is only 8 weeks old.

Meds: Started on Zantac at 6 days old. 15 mg/mL, 0.75 ML twice a day. He was exclusively breastfed at this point, and we already knew he was refluxing. He was nursing every 2 hours, getting plenty of milk (had only lost 1oz body weight at hospital discharge when he was 28 hours old), and very screamy for a newborn. At about 7 days old he started getting a little bit of formula. I was exhausted by a screaming, unhappy baby that wanted to nurse every 2 hours, so my husband would take him after a sleepless night and feed him a couple ounces of formula while I slept. The Zantac didn’t help, and the pediatrician suggested we switch to soy formula when he was getting formula. He started spitting that up. Prior to the soy formula, I don’t think he’d spit up much of anything. By 4 weeks we’d tried soy, sensitive, gentlease, rice starch, and he was still an unhappy baby. At that point we had an office visit with a different pediatrician who put him on Omeprazole 2 mg/mL, taking 3mL once a day, and suggested using Nutramigen when using formula. The 3mL dose once a day wasn’t helping, and was increased to 3mL twice a day on March 20th (6.5 weeks old).

March 28th I took him back to the pediatrician because he’s just miserable. He eats, then 20 minutes later he starts screaming. He’ll scream for 2-3 hours, until he is exhausted and falls asleep. He stiffens his body straight like a board and is completely inconsolable. He screams until he can’t breathe. Pediatrician said to add rice cereal to his bottle, and might as well go back to regular formula since the Nutramigen wasn’t making any difference. I asked about Prevacid, and she told me that it isn’t on the Kaiser (insurance) formulary and has to be approved. She said she’d consult with a pediatric GI doc and get back to me today. She also noted that he had only gained 4oz since the previous visit 3.5 weeks prior.

April 1st: Today he is 2 months old and we had his “well baby” appointment. He’s dropped 3 ounces since last Thursday. Actually he’s lost more than that, because today he had on a dry diaper during his weighing. Maybe that is another ounce? He’s still been on the Nutramigen (I was using the last of it) taking 4oz per feeding and adding 3tsp of rice cereal to that. So between March 5th and April 1st he has gained exactly one ounce. I asked what do we do now, and she said the GI doc said no reason to switch to Prevacid. I asked about going back to the Zantac, in addition to the Prilosec, and she said that was fine to try. Of course, the pharmacy was out of the Zantac today, so I have to pick it up tomorrow. She also wants me to feed him more frequently or more ounces per feeding to gain weight.

I can’t feed him more often. He currently eats 4oz every 4 hours, and screams for 2-3 hours after most feedings. He falls asleep around the 3 hours after feeding mark, totally exhausted from screaming and writhing in pain. I’ve tried giving him 6oz (thinking maybe he was still hungry and that’s why he is screaming) and he will vomit it all up during burping. I’ve tried giving him 2oz extra in the middle of the 2-3 hours of screaming, and that prolongs the screaming, and often causes him to vomit it all. Tonight I gave him 5 ounces and he kept it down. I do think adding the rice cereal to the bottles has helped a tiny bit in terms of getting him to scream less.

But now that we know he’s not gaining weight I’m suspecting it is not just the reflux that is causing the screaming. The pediatrician said she wants to check his weight again in a week, and if he hasn’t gained a few ounces then we may need to switch to Elecare, and she’ll want to do “lab work”. She didn’t specify what she meant. I don’t know what she could check via blood test. I’ve read that allergy testing this young isn’t reliable. What else is there to check via lab work?

Any insight? Anyone have/had a baby that screams in pain, doesn’t spit up much, and doesn’t gain weight?

[Anonymous]

Forgot to add: Pediatrician wanted to blame “colic” last week. Tried to talk me into “well at least it usually gets better around the 3-4 month age mark if it is colic”. She didn’t mention colic today. I think the weight problem may have lessened her opinion on colic.

Diapers: Prior to Nutramigen I felt like the diapers were on the mucousy side. This is also when I was still breastfeeding, and baby was also getting formula, so the diapers were neither typical BF baby nor typical “formula” diapers. I had one “mucousy” diaper examined on March 5th by our non-regular pediatrician, and she thought it was normal. I also felt like they stunk like rotten eggs. Poop was happening about every 2 hours, and we had bouts with terrible diaper rash, so bad that sometimes he was bleeding no matter how often he was changed, no matter what cream I was using, etc. I was using Huggies Pure & Natural diapers with organic cotton, no perfumes, etc.

Since the nutramigen the poopy diapers have become less frequent, and often only once a day. Poop is a firmer paste, with very little odor. I think the bad diaper rash has been completely gone since the Nutramigen switch.

Today I used the very last of the Nutramigen we had, and baby received two bottles today that had a mix of Nutramigen and Similac Sensitive (since pediatrician said go back to “regular” formula). Tonight the diaper was “stinky” according to my husband (who dealt with the diaper while I was making dinner). I didn’t think much of it at the time, so I didn’t investigate.

[Anonymous]

Anyone?

[hellbennt]

silent reflux.

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

It’s looOong 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

about the formulas:

https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

[Anonymous]

I’ve read a lot of those links while waiting for a reply here. I also stayed up all night to read this book: http://www.amazon.com/Colic-Solved-Essential-Infant-Difficult-/dp/0345490681/ref=sr_1_1?ie=UTF8&qid=1365110967&sr=8-1&keywords=colic+solved The title is “Colic Solved” but has nothing to do with colic and everything to do with reflux. It is highly informative and was a fantastic read.

That said, I still have a few questions:

1. How do you determine MSPI? Are there specific tests that will point to MSPI, or do you simply switch to EleCare to see if that solves the problem? Does EleCare ever end reflux for babies with MSPI? If we were to try EleCare, how do you know if it is the formula or the meds helping?

2. My baby is 5.875kg, and on a 1x daily dose of Zantac at 18.75mg. From the reading here, it sounds like the dose is too low, and should be twice a day, not once. How do I convince our doctor to prescribe a higher dose? “I read it on the internet” is probably what they hate to hear most.

3. My baby didn’t gain any weight between 4-8 weeks. Could that be due to MSPI? He spits up very little, so he’s not losing a lot of volume.

[hellbennt]

excellent book, Colic Solved!

no tests for mspi – it’s how baby reacts to the formula – pain, gas & poops

mspi doesn’t affect weight gain, unless it’s painful for baby to eat and then s/he doesn’t eat enough…

you might have to try switching to elecare and give it a good two weeks to see how/if things improve

how will you know about the meds? once baby is on the new formula for a good two weeks then try cutting back on the meds & see what happens…

so much of this is trial & error

how do you increase dose?

you inquire about dose from pharmacist – it’s here:

Zantac dosing- my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

hang in there!

[Anonymous]

Hi Ryan’s Mom…

When I read posts like yours it always brings mixed emotions. The first I feel is my heart crying and often my eyes literally fill with tears… because… I know just how you feel. I sometimes get disgruntled with myself for always being able to “feel” so well for other people. Like…. after having 2 brothers and my dad all tragically killed at 3 seperate times, I will/can NOT attend funerals unless it a very close relative or friend. Funerals bring back so many memories and feelings and I feel so bad for the people involved because I know just how they feel. And then I am depressed for days after the funeral even if I hardly knew the person….

OK… sorry for getting side tracked. This is NOT a thread about funerals. Although I did fear at times when my little one was in pain so much of the time and he screamed for hours and hours and didn’t gain weight… that maybe he had some kind of terminal illness that I was unaware of. 🙁

Anyway while feeling so bad for the mom and baby, I also start feeling upset at the doctors. Time and time again I have to just tell myself… “The doctors are doing the best to their knowledge”. But what frustrates me the most is that although doctors have a ton of knowledge and go to school for years to learn all about the many illnesses etc… some of them really know very little about the cause of many of the diseases. They are taught to treat symptoms and know what med to prescribe for what symptom. They are reactive. They react to problems. The are not proactive in trying to prevent problems or figure out the root cause of problems. In reality I can not be upset at the doctor himself but I do sometimes feel upset at the medical world as a whole. Don’t get me wrong… I use doctors and am very very thankful them. They save many many lives and serve an absolutely wonderful purpose. But I just wish that pediatricians would be taught more extensively about baby’s digestive problems.

The book Colic Solved… I love it! Although I was frustrated with my ped GI I was very pleased that she recommended this book to me. I made me breath a sigh of relief…. THERE IS NO SUCH THING AS COLIC!! I was so impressed with this book that I bought 8 of them and gave them to all my friends and family. 🙂

Sadly there isn’t really a test to determine MSPI except trial and error. If you decide to change to Elecare then I would not do it at the same time as med change. Because then you won’t know which one helped. But then again if the doctor prescribes both at the same time and you want results NOW (actually yesterday) then you can do both at once and if/when your baby feels better you can change either the meds OR the formula back to what you were doing before and see what happens.

Yes, I suppose doctors don’t like to hear “I read it on the internet” so you don’t have to say those words. 🙂 Say “I’ve researched…..” 🙂 “Research” sounds a little more sophisticated. 🙂 I often felt that if my peditrician would’ve spent a max of even just one hour doing some research he would’ve benefitted many of his patients GREATLY. He had never even heard of MSPI before and didn’t know how extensively dairy had to be cut out of a nursing moms diet.

The internet and other moms are GREAT!!! Once when my little one barfed up dark blackish flecks in the middle of the night I was prepared to take him the ER. But instead called the doc on call and she said to wait till morning. In the morning I could see that the specs were dark purple. I was so worried it was blood. I took the baby’s blanket he’d barfed on in to the lab and also the dr had him have a test done where they have to drink white stuff and watch it on an xray. (Can’t think of the name of the test). It took them all of a few seconds to say.. “WOW he certainly has reflux”. After the test we waited around for the results from lab. Finally the doc called us in to tell us that they didn’t know what the flecks were. They were of a sugary substance. “Was it possible that big 2 year old brother could’be given him a hard candy?” Ummmm doctor… my baby is only a couple of months old and only takes formula. Eat a hard candy??? I don’t think so… So we were sent home without any answers. We didn’t have internet then but when I got home I called my sister that did and asked her to google it. Within seconds she was reading to me… “If your baby is on Prevacid, be aware that it can cause purple flecks in baby’s vomit”. I was so upset that we had just spent hundreds of dollars at the doctors office!!! I decided right then that unless I had an emergency… always research on my own first.

Not gaining weight… there is a saying… “We are what we eat”. Well take that another step further.. “We are what we digest”. So although you baby is eating, if he isn’t able to properly break down and digest his food, then he is not absorbing it or able to use it to grow on.

Nutramigen has the proteins in it extensively broken down. Where as with regular formula the proteins are still quite large and for some baby’s they can have a really hard time breaking these proteins down, digesting them, and being able to properly utilize them. So when a baby drinks Nutramigen, they are better able to digest, untilize, and absorb it. But for some babies the proteins in the Nutramigen can still be too big and too hard for them to break down. Elecare has the proteins completely broken down. So thus why some babies can thrive better on Elecare. They are better able to utilize it.

An interesting fact is that undigested food is extremely acidic to the body. And another interesting point is that much of undigested proteins just hang out in the body. Beings the system can’t break them down, then it has a very hard time ridding them.

So even though a baby may be drinking Elecare where the proteins are completely broken down, there is most likely undigested protein built up in the system.

Isn’t the body supposed to be able to break down protein on its own? Yes, it is! What is needed to break down protein? Digestive enzymes!! But for some babies (and many adults) their pancreas (which is what makes digestive enzymes)just doesn’t make enough.

Beings you have spent a lot of time reading and looking around on this forum you have probably come across my replies about probiotics and digestive enzymes helping my children so much. So I don’t want to bore you with details that you have already read.

But if you have not read my blog… I highly recommend you taking a look at it. (see my signature below).

I am so so terribly sorry that your little one is suffering so much. (((HUGS))) to you both! I hope very much so that SOON you will find the right answers and help for him!!!

[Anonymous]

Thank you for the lengthy reply.

The Nutramigen has some sort of probiotics in it. I’m not sure if they do much. We stopped giving him Nutramigen a few days ago, since it didn’t seem to be helping at all, and went back to a milk-based formula, Enfamil Newborn. It also has some probiotics in it. I’m not sure if those are what you would consider enough.

We’ve had good days and bad days this week. I’ve been charting each feeding and meds. I can’t make any associations with formula/meds and fussiness. Today was a bad day. Very fussy, and very short naps. Very restless.

We go back to the pediatrician to weigh him on Monday. We don’t have an actual appointment with the doctor. The nurse will weigh him and report it to the doctor and then they’ll contact us if they feel he hasn’t gained enough and something else needs to be done. I had asked her how much he should gain in a week, and she said between 1/2 and 1 ounce per day. It seems like it would be extremely difficult to measure 3.5 – 7 ounces of weight gain in a week’s time. I imagine his bladder could hold that much alone. And I’ll have to try to time his feeding the same as when he was weighed last week (he was nearing feeding time). So unless he has lost or gained a significant amount, I’m not sure how they can tell if there has been any change at all.

Another thought I’ve been having: I had gestational diabetes during my pregnancy (actually with all 3 of my kids I’ve had it). It was fairly well controlled this time, with diet and a once daily Glyburide pill. Ryan’s sugar levels were low for a couple hours after birth, because his pancreas was used to making extra insulin to compensate for higher glucose levels. I’m beginning to wonder if his lack of weight gain could have something to do with this. I’m not hopeful that his pediatrician would be terribly knowledgeable on this. I may have to advocate for a visit with a specialist. Endocrinologist?

[hellbennt]

now that you’ve changed formulas, stay with it –

every change should be given a good two weeks…

as for the zantac- calculate and give the highest dose- how to explain?

You researched, a friend’s baby was on zantac and tell MY story (link above) of how I learned there are TWO dosing guidelines- one for pediatricians and one for ped GIs…once you give the highest dose, split in two, you can always just TELL you did it. and it’s working! (I hope it does!)

again, DO NOT just take my word on this! read the link in the post above…

~~~~~~~~~~~~

I’ve linked below some reading for you to help you determine if it’s mspi-related reflux.

reflux can be ‘just’ reflux, due to an immature LES (lower esophogeal sphincter)

and it can also ‘go along’ with protein intolerances (the ‘main’ ones are milk and soy, thus the mspi term)

and, it can also ‘go along’ with Delayed Gastric Emptying –

there’s a test for this – called the Milk Scan (sometimes)…

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

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

interesting about the pancrease…it also produces enzymes to help digest/break down food/proteins…

I happen to believe it’s worth it to explore ALL avenues- that includes (but does not particularly EXclude anything): chiropractic care, cranial/sacral massage, probiotics, digestive enzymes, altering diet (formula), aloe vera juice & I’m sure there’s more I’m forgetting

HOWEVER, from MY OWN experience:

I BELIEVE IN WESTERN MEDICINE, TOO, ALONG WITH WHATEVER ELSE SEEMS TO WORK…I believe in PROTON PUMP INHIBITORS at fairly ‘high’ doses.

This is ME. Who amI? A Mama who had a baby with SEVERE GERD; a Mama who tried the Total Elimination DIet, tried chiropractic care, went to a QUACK (do NOT try the trademarked ‘Bodytalk!!!’), a Mama who RESEARCHED and found this board and the ‘University of Missouri (then it became Marci-Kids)’ dosing and compounding…that’s where I’m coming from. I’ve been on this board TEN YEARS and I’m sorry to say it’s RARE that a baby, whose parent finds this board (mainly out of desperation), was helped ONLY by ‘methods’ OTHER THAN MEDICINE…

this being said:

posts that mention enzymes:

https://www.infantreflux.org/forum/forum_posts.asp?TID=12781&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12610&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12227&KW=enzyme

Post from me:

https://www.infantreflux.org/forum/forum_posts.asp?TID=12200&KW=enzyme

hellbennt2013-04-07 16:40:29

[Anonymous]

Hi RyansMom – i feel so bad for you and your baby!!! 🙁 I was there a year ago this time – and man, i never thought we’d get through it – and to be honest, we are still struggling. Although our children’s dx’s might be different (my daughter has Sandifer Syndrome due to severe silent reflux – she has been on Elecare and then Neocate since 6 weeks old. She is on 15 mg of prevacid twice a day – that’s a huge dose, she’s on 5mL of Reglan 4 times a day – that’s also a HUGE dose and we STILL struggle) – maybe we can help each other through this forum. So, although that’s not what you want to hear, I just want you to know from experience, i’m still searching for answers and relief for my baby – although i think we are doing the max medically we can do – i think TIME is all that can help her at this point. it does get better – SLOWLY. Here’s my story – i just posted it last month but have been reading this forum for a year. The ladies on here are soo informative and wonderful. I’m glad you found this site!

https://www.infantreflux.org/forum/forum_posts.asp?TID=16253

[Anonymous]

Thank you purllow182 for coming back on to help out!! Since every child is different and reacts differently to formulas and meds… the more experienced moms we have on here the better!

[Author]

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