Infantreflux.org | Help! My 3mo is crying all the time!

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March 1, 2009 at 9:54 pm #61341

Anonymous
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Hello all! This is my first post on this board. After searching around I found this board and after reading others, it is nice to know that others are in the same boat as my wife and I currently are with our 3 month old son.

Our son was born one month prematurely. Since almost day one he has been a difficult baby. He cries all the time and seems to be in pain an awful low. After going to our pediatrician countless times, she finally put him on Zantac. She prescribed .5ml twice a day. After being on this for about two months, it did not seem to be doing much of anything.

Again our pediatrician said it was just a phase and that things would get better eventually. However, my wife and I were convinced something more was wrong with our boy. He was miserable and in turn we were miserable.

Finally, we set up an appointment with a pediatric gastroenterologist. After meeting with her for an hour last Monday, she came to the conclusion that our son was allergic to the protein found in both milk and in soy as well as having a reflux problem.

My wife is breastfeeding some and giving him formula as well. The GI had us switch to Enfamil AA Lipil and also she prescribed Prevacid. Thus far, the new formula seems to be helping our son out.

The first three or four days things seemed to be getting better. Our son would drink all the formula and sleep well at night…only waking two times for feedings. However, over the last three days, things have seemingly gone downhill. While he is still sucking down the formula, he is having big problems with the reflux. He is spitting up a lot, and when not spitting up, you can hear the liquid in his esophagus or even see it in his mouth. He is back to crying an awful lot and cannot sleep more than 10-15 minutes without waking up in a panic, screaming and yelling. It is very tough to watch and to deal with as a parent and it is tough for our little guy as well.

Does anyone have any experiences similar to this? Is it possible that the Prevacid is not right for him or that the formula, despite positive results thus far, is not good for him? His problems originally centered on the stomach, but it seems to be more the reflux now. I have read that other than Zantac and Prevacid, some doctors prescribe Prilosec for infants with reflux issues.

How long does it take Prevacid to work? After seven days should we be seeing results. Is it normal that after a few good days, things have gotten worse for our son taking this new formula and prevacid?

Any insight or information that anyone might be able to pass along to us would be greatly appreciated. I am going to call the GI nurse tomorrow and let her know what went on this weekend with the constant pain, lack of sleep and numerous bouts of spitting up. I am hoping she can give me some answers. This has been a frustrating three months for my wife and I and all we want to do is help our son feel better.

Thanks for reading our story. Anything you might be able to help us with would be appreciated.

ChicagoTom

March 1, 2009 at 10:33 pm #61344

Anonymous
Inactive

Hi there and Welcome!

A couple of thoughts…

1. I would ask for Neocate. How premature was your baby? I know with preemies their tummys and GI tracts can take a bit of time to mature and catch up that this formula was a life saver for us.

2. BFing, Your wife might have a lot of success making your baby more comfortable with the elimiation diet. We were not successful breastfeeding, but there are a LOT of moms here that were, so they will have lots of great advice on the elimination diet, etc….

3. Prevacid is a good med, but can take up to two weeks or so for the old damage to clear up in the throat and fully shut off the pumps to make your baby more comfortable. many of us have done the zantac while the prevacid was “kicking in” so to speak. They have to be spaced approx. 4 hours apart, though, but may help a bit.

4. what is the prevacid dose? could be too low…

5. Is the crib elevated? this can help at night…

we did have several of these “honeymoon” periods with new formulas for a few days after we started something new and thought it was the “miracle” answer for us, but Neocate was very gentle on their systems and allowed my babies to be much more comfortable.

Hang in there! You have found a great place with a wealth of experience and information~

Ann Marie

March 1, 2009 at 10:34 pm #61345

Anonymous
Inactive

sorry, just saw the one month, for how long… still could be an immature gut and Neocate could definitly help….

March 1, 2009 at 11:16 pm #61346

Anonymous
Inactive

First of all, thanks for the reply. We really appreciate any insight people can give. As for the questions.

monty123 wrote:

1. I would ask for Neocate. How premature was your baby? I know with preemies their tummys and GI tracts can take a bit of time to mature and catch up that this formula was a life saver for us.

One month premature. He was born on Thanksgiving 2008. My wife’s water broke inside Babies R’Us of all places.

monty123 wrote: 2. BFing, Your wife might have a lot of success making your baby more comfortable with the elimiation diet. We were not successful breastfeeding, but there are a LOT of moms here that were, so they will have lots of great advice on the elimination diet, etc….

I had just done some research about the “Elimination Diet” when we saw the pediatric GI last Monday. We also talked to a nutritionist that day who gave us a sheet of things to avoid and things to eat when trying to avoid the problems caused by allergies to the protein found in milk and soy. So, my wife has been sticking with that for the past six days. She is following the diet well. She is not eating anything bad. Thus, I would like to think her diet is not the current problem.

monty123 wrote: 3. Prevacid is a good med, but can take up to two weeks or so for the old damage to clear up in the throat and fully shut off the pumps to make your baby more comfortable. many of us have done the zantac while the prevacid was “kicking in” so to speak. They have to be spaced approx. 4 hours apart, though, but may help a bit.

This is something I am going to ask the GI nurse about tomorrow morning when I call there and let her know about the past few days. I want to see what she says. If she gives us the green light we will be sure to space out the doses by at least 4 hours.

monty123 wrote: 4. what is the prevacid dose? could be too low…

Our GI prescribed our son to take 7.5mg of prevacid once a day. She advised us to have him take it first thing in the morning. She mentioned nothing about taking it with or without food. Does this dosage seem low to you? Mind you, our son is three months old.

monty123 wrote: 5. Is the crib elevated? this can help at night…

Unfortunately, the crib has not been used yet. He hates it and has from day one. He basically sleeps in our bed. We have a nice propped up place for him to sleep. It is the only place he is willing to sleep since he was born. I know it is not normal for babies to sleep in the same bed as the parents, but I am at the foot of the bed and my wife is next to him. The little guy takes up more space on the bed than any of us. We do have him elevated on the bed quite high. We have the wedge as well as a few more things to keep him elevated.

I cross my fingers and pray everyday that we find a solution to our problem soon. As I said in my initial post, it has been a very tough three months for us so far with our son. He eats well and he does some smiling. With the new formula things seem to be getting on the right track, but there is still something not quite right. I have read that with reflux and food allergies that it is a matter of finding the right combination of formula and medication.

Thanks again for your post. We appreciate it greatly.

March 2, 2009 at 7:46 am #61347

Anonymous
Inactive

ok, prevacid dose does seem low…what form? solutab?, Compound? also babies metabolize faster so once a day may not be enough…..

Laura here on the board has a great intro file with great info on all of this…

hey, no apologies on the sleeping thing….you do what you have to when your baby is in pain!

this is all so hard! oh, the diet thing…may take a couple of weeks as well for your baby’s system to feel better if it has only been 6 days, so great job! to your wife as the diet can be really tough!

hang in there! i’m sure others will chime in with more info today

March 2, 2009 at 9:10 am #61348

Anonymous
Inactive

monty123 wrote: ok, prevacid dose does seem low…what form? solutab?, Compound? also babies metabolize faster so once a day may not be enough…..

Our son is taking the solutab right now at 7.5mg per day.

I will let my wife know about the diet. As I wrote in my post last night, I am going to call the GI nurse this morning to get her take on things thus far.

Our son slept okay last night, but it was rough getting him not just to sleep, but to stay asleep. That seems to be the big challenge right now as he is clearly tired, but the reflux that we can hear seems to awaken him suddenly and he is in a panic and it is back to square one getting him to calm down and eventually fall and stay asleep. Lot of work to get this done. It is a two person job if not more.

Thanks again for the advice and info.

March 2, 2009 at 11:36 am #61354

Anonymous
Inactive

the prevacid can take up to 3 weeks to see a difference because it can take a while for damage to heal. i think it was day 12 for sylvia when she finally slept for 4 hours in her bassinet one night.

i know it goes against everything they tell you about SIDS these days—but reflux babies do better if they sleep on their stomach. HOWEVER—i would never consider putting him on his stomach if he is in your bed—only if he was in his own crib and on a firm mattress. laura probably has the link to the college of pediatrics article that actually says tummy sleeping is better for reflux babies. alot of people that have been on this board have used an angel care monitor when they put their baby to sleep on their tummies. this is something you might talk to your ped gi about.

his dose of prevacid does seem too low.

March 2, 2009 at 3:21 pm #61359

hellbennt
Keymaster

hi & welcome!

I’m the aforementioned Laura & I have a LOT to say & (most of) it’s here:

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

Please PLEASE take the time to read/scroll/skim through the info from this link, as it truly will help you!

if your wife would like to continue breastfeeding, then she can eliminate ALL milk & soy protein from her diet and thus her breastmilk will be like a milk & soy protein free formula…just wanted to throw that out there- however, it takes a good 2, or even 3 weeks, of eliminating these proteins from one’s diet before the milk is truly free of these proteins- and it also takes a good 2, or even 3, weeks for the proteins that have built up in baby’s system to clear out…so, regardless of formula or milk/soy free breastmilk, it can take a good 2 or 3 weeks to see any kind of changes…

as for prevacid: http://www.marci-kids.com is THE SITE to research

when baby is on PROPER dose and it’s a PROPER form AND it’s ADMINISTERED properly, it can take up to 14 days to see it’s full effects.

solutabs need to be given on an empty stomach, follwed by a ‘meal’ 30 minutes later to be effective.

in the meantime, you can safely give the zantac, too, just make sure to give it spaced 4 hours from the PPI. here’s to calculate PROPER zantac dosing:

Zantac dosing- my/other’s question (has axid & pepcid dose, too): https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

one more thought: of COURSE you want your ped GI on board!!! however, many of us, myself included, have found that they (ped GIs, peds, doctors, even some lactation consultants) are not always as up-to-date as we are here, on this board (thanks to http://www.marci-kids.com we have all done our research)…you are your child’s advocate. please research all you can and advocate for your baby…for example: my baby was on zantac and switched to prilosec (longer story- it’s in ‘groupie intro, link is above in this post) but we were never told we could keep on w/ the zantac- well, until PPI starts to be effective, it’s as if baby isn’t on ANY meds at all! I certainly did not know this until my poor baby howled/shriekd for 24hrs straight and LOST HIS VOICE…so I called & demanded that something must be done, as this could NOT be normal, and we were given the go-ahead to give the zantac, too. another example: I had to give marci-kids info to my (open-minded, willing to learn/listen, thank G-d!) ped GI for a prevacid increase…

all of this to say that EVEN ped GIs currently do not have all the answers…NOT saying this to scare you! but to ENCOURAGE you

michelle’s post about pushing for the right dr: https://www.infantreflux.org/forum/forum_posts.asp?TID=1002

another link:https://www.infantreflux.org/forum/forum_posts.asp?TID=10133&PID=87611#87611

and this just to top everything off, LOL!

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

hellbennt2009-03-02 15:42:12

March 2, 2009 at 3:58 pm #61361

Anonymous
Inactive

Thanks Laura! This is a lot to read but as a parent looking for relief for his child, there is no such thing as too much reading. I want to learn and know as much about this as possible.

I will keep everyone posted on things with my little guy. It is great to know and have others that have dealt with this before. It is a lonely feeling for my wife and I to deal with this. This is our first child and dealing with our son has been the most difficult challenge in our lives thus far. I hope and pray things get better sooner rather than later.

Thanks again everyone.

March 3, 2009 at 4:44 pm #61374

Anonymous
Inactive

Well, I talked to the doctor and nurse and they are not sure if the incessant crying is a result of the reflux or the formula change to the Nutramigen. They both said the Prevacid should have kicked in by now and be working although it does not seem to be doing much as our son is still crying a lot and we always hear liquid in his esophagus and even see it in his mouth.

Thus, our doctor has prescribed a medicine called Karasate. This is supposed to be taken twice a day an hour after feedings. It is in liquid form and it is supposed to help eliminate any of the acid that the Prevacid has not gotten rid of. What are people’s thoughts on Karasate?

I mentioned taking Zantac in conjunction to the Prevacid and not giving it within four hours of the Prevacid but they want to go the Karasate route. Does that make sense?

In two or three days I will be calling the nurse back to give her a report on how things are going. She said the Karasate should take effect rather quickly (a day or two) and if our son is still having problems that she thinks we will need to change to Neocate formula.

What are people’s thoughts on this way of going about things? Does it seem right to you? I cannot complain about this doctor and nurse. They are the first people to take our problem seriously and they are always nice and patient with us both in the office and on the phone which is a welcome relief. I am hoping the Karasate helps. Once again, my fingers are crossed.

Tom

March 3, 2009 at 5:17 pm #61375

hellbennt
Keymaster

carafate is a good band-aid medicine…we used it…it is meant for short term. it helps heal the esophogus.

They both said the Prevacid should have kicked in by now and be working although it does not seem to be doing much as our son is still crying a lot and we always hear liquid in his esophagus and even see it in his mouth.

how long has he been on the prevacid? from everyone’s experiences it is not unusual for it to take a good 14 days to see it’s full effects

solutabs need to be given on an empty stomach, follwed by a ‘meal’ 30 minutes later to be effective- is this how you are administering it?

personally before stopping breastfeeding

(unless that is what your wife wants to do! please clarify, so that we (I!) do not go on and on about this! I certainly do not want to broach this sensitive subject if formula is your decision!)

I would address the MEDICATION. have you checked http://www.marci-kids.com ??

March 3, 2009 at 6:29 pm #61376

Anonymous
Inactive

i think your doc is doing well….it can be a bit of a road to figure it all out and so far sounds like they are working well with you…..

I agree that bfeeding is great if it works for your wife, then that is awesome! I think, though, you guys are already doing both (bfing and supplimental formula) so if that is the case then I would go to Neocate if they offer it to you for your suppliment.

I do agree with laura that if you change too many things at once, then it can be difficult to figure out what is going on. A lot of babies here once they were on the right dose of meds, that was the biggest piece of the puzzle for them. For us, it was more a reflux was a result of teh MSPI, so then the formula/(diet if I continued to BF) was a bigger piece for us, so it will just depend on what works out for your baby.

Hang in there!!! You guys are doing great!! It is a long road with some trial and error, but I do think you are doing all the right things!!!

March 3, 2009 at 10:13 pm #61380

Anonymous
Inactive

My wife is still breastfeeding and is on a strict diet per a nutritionist we met in conjunction with the pediatric GI at the University of Chicago. Our son is once again crying an awful lot tonight. I just got back from a 60-mile ride in the car. He usually can fall asleep soundly so when we get home we can put him to bed, but he woke up in the car tonight and cried for a bit. Now, back at home my wife is trying to get him to sleep as I write this.

As I look more into this situation, I am starting to think the formula is the issue. He took to it very well the first few days, but now he cries when he eats it and such. Additionally, the reflux was never as bad as it has been since he started the Nutramigen AA.

I have a few questions, my wife and I have talked about going to emergency room a few different times in the last few days. Is it worth it to go in there? Is a pediatric GI going to be there to help us? Or are they just going to do some basic tests and refer us to a doctor the next day to be checked out?

Also, our son has issues sleeping. For those of you who had your child sleeping in the bed with you, do you have any suggestions or pointers that might help us? We have his little area propped up well and I would think it would be sufficient but he just does not like sleeping anywhere other than in someone’s arms. I have no idea why, but that is the way it is. Did anyone else out there have this problem and how did you deal with it?

Lastly, I just want to say thanks to those who have replied and read about our ordeal. We are doing our best and it helps that others out there like you have some thoughts and suggestions for us. We really appreciate it.

Thanks again!
Tom

March 3, 2009 at 10:14 pm #61381

Anonymous
Inactive

Also, what does the acronym MSPI mean? Is that the protein intolerance?

March 4, 2009 at 6:48 am #61386

hellbennt
Keymaster

Milk Soy Protein Intolerance/Allergy

telling us about gas – foul smelling & frequent

and also about stools can help us tell you our thoughts re: mspi

if baby has regular breastfed baby stools (now might be hard to tell)- mustardy & seedy that is a good sign (that it might not be diet related)

frequent green stools (an occasional green diaper here & there is perfectly normal), foamy stools like shaving cream, watery stools, mucousy stools (look like ‘banana strings’ or like actual mucous from your nose), frequent fouls smelling gas- these are all tell-tale indicators of a reaction to a protein in the diet

please let us know about the prevacid dose and what it is in relation to marci-kids…I AM NOT one to PUSH for medication! I am one who, out of desperation, brought my infant to an alternative person (turned outto be a QUACK, but I was desperate!) and even DID pursue chiropractic care (along with medication)- I am only pursuing this, along w/ the mspi thought, bcse the two go hand-in-hand…as for taking to the formula- this is called the ‘honeymoon phase’ and seems to happen often w/ changes in formula- this is why so many report that it is best to give each formula change 2 weeks- of course if it’s making baby miserable (sounds like you are ready to stop this perticular formula), then you’d stop- but if/when you get to neocate then it’s best to give it a try for a full 2 or 3 weeks…same w/ diet change…

Im all over the place- sorry- trying to get out door to work- so anyway, it’s all really hard to figure out- mspi, ‘just’ reflux, etc. I did the elimination diet out of desperation (I was very desperate at the beginning! my son was in the nicu from his gerd- he was home on a monitor- ack! so that’s how I ‘landed’ here and havent left since, bcse so many people still need help…and that’s how I found dr philips (of marci-kids) & his research…you can even contact him yourself and have him speak w/ your dr…he’s great about that- he’s not a ped gi but has a pharm D and is at the forefront of researching all about the use of PPIs in infants…)

Mspi/allergy info(‘main page’): https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=1&TPN=1

from the above link look for 2 things: 1) page 2 after ‘google cache’ is the BEST explanation re: intolerance vs allergy & 2) look for link entitled something like ‘Misconceptions about ELemental Formulas’ this is really very helpful and explains about the various formulas, etc

hang in there!

hellbennt2009-03-04 08:01:26
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