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This post is long, but I’m so confused I just put everything out there hoping those of you with experience in reflux babies can tell me whether my son’s behavior is typical of a baby with reflux or food intolerances or just colic and gas. My husband and I are first time parents and we, especially me, are at are wits ends with our situation. Since this is our first child and we really know no one who has dealt with reflux we feel like we are grasping at strings making choices for our son and we just want to make the right choices.
I have done extensive research on reflux, food intolerances, colic, baby gas, medications, etc. and because of this have been able to predict the Dr.’s course of action before each appointment, but now our Dr. has prescribed Reglan and I’m extremely hesitant to give it to our son, as I have been about Zantac, which made no difference, and Prevacid, which may be helping him a bit…Our son is just 2 months old and while he is gaining weight steadily he is not what one would call a “happy chucker”. He was born at 6.14 and now weighs 11.15, and though he is gaining weight well he is extremely irritable among many other symptoms.My question to all of you parents out there is multifaceted because I’m so lost and just want to make the best, educated choices, for our son.First of all, I want to know what all of you think of my son’s habits and symptoms.Crying: We are lucky to get about an hour of happy awake time in the morning and again in the afternoon, but for the most part our son spends the majority of his awake time crying. And, no matter what we do, most of the time, we cannot get him to stop. What worked yesterday never works today. He also wakes from his sleep crying, during the day, all the time. I think I’ve seen him wake peacefully maybe a handful of times. At bed time, he has crying jags that can last anywhere from 30 minutes to 3 hours and at those times it is impossible to stop the crying.Sleep habits: When we 1st brought him home he was much easier than he is now. He slept fine in his bed, in his pack and play, our arms, wherever…and alot, but that is understandable. Now, he sleeps best on someones chest. He will actually sleep soundly, when laid down on the couch, which I feel is unsafe, but anywhere else he rouses in a matter of minutes. Even the couch is not failsafe. If I want him to get any sleep I pretty much spend my day sitting with him glued to me. Even then his naps last 45 min on average tops. At night, after his crying jags I usually can get him down for about a hour to 3 hours but it varies and is only about 25% of the time. The other 75% of the time he will only sleep on one of our chests. After his initial sleep spurt it is impossible to get him to bed on his own and I am resigned to sleeping with him on top of me. Otherwise, I’m up every 30 minutes getting him back to bed. In our bed I can get a 4 hour stretch and a 6 hour stretch. But, sleeping is miserable for me and I worry about him rolling off me onto the floor so my husband gets a sliver of the bed and I create a pillow fort, but that too makes me nervous because our son could roll into one of the pillows and smother. My only consolation comes from an apnea monitor he is on, due to family history and the Dr. has now kept him on due to reflux, because it will alert if he has not taken a breath in 20 seconds.Vomiting/spitting up: We go through burp rags and clean shirts like there is no tommorow. He will spit up to some degree without a doubt after every feeding…Also between feedings. He projectile vomits at least 1 time every day. Then there are many instances when he is upright after a feeding, on my shoulder, where food is coming up in abundace but I’m unable to say definatively whether he is vomiting or spitting up due to his face being against my body. I don’t know what is common spit up/vomit wise among reflux babies. Our Dr. is concernded over 1 vomit a day and no great response to Zantac or Prevacid and that is why he’s advanced to Reglan.Other symptoms: Hiccups multiple times a day, wet burps whenever we can get him to burp, lots of painful gas which he will wake from screaming, hates tummy time, constant stuffed nose, ocassional chest congestion, back arching often while crying, lots of drool, breastfeeds well at night and maybe 2 times a day, but fusses at the breast more often than not and feeds for a max of ten minutes most of those times,and then back on the breast in about an hour, ocassional red eyes he rubs, spit uo is ocassionally like curdled milk and mucousy, really runny poops 1 time a day since intro of Prevacid-where pretty normal previously. I think thats it.As a food intolerance precaution I’ve had no dairy for almost 2 weeks now and trying to stay away from soy, but need to reevaluate my diet much more to accomplish that as soy is in everything that is not organic.I know I have a LOT of information here, but I don’t know what is typical for a baby with reflux or food intolerances or colic or gas or whatever it is making our son soo unhappy. I’m just looking for those of you with experience to evaluate what I’ve said and tell me what your opinion on our situation here.I don’t want to force medication on our son when I feel like they’re making little difference and I certainly don’t want to give him Reglan without feeling one hundred percent certain it would be benificial. Our Dr. is great, but he is a big “reflux” Dr. and jumped to prescribe meds each time we had a discussion over our son. I’m planning on visiting a different Ped before giving him any different medication just because I want another opinion.This may be my first child, but I’ve had a lot of experience with babies and newborns and I know my son’s behavior is not what is considered normal.. and I know I am a good mom, but I feel like a miserable mother when I have to put him down because I cannot handle a second more of his crying or having absolutely no personal space at any time during my day. I just want to get this situation figured out so we can have a happier baby. I don’t want him to be miserable because it is beginning to make me pretty miserable as well.Please help me with your opinions and advice. I greatly appreciate any input any of you may have.SarahHi all
Hoping that someone out there might have gone through what we’re going through and have some advice about what worked for them??
Our daughter developed severe silent reflux at 5 and a half months – around the time of weaning her. She is now nearly 11 months and her silent reflux is still terrible.
She wakes up almost every hour through the night – has done for the last 5 months – she sits bolt upright with a cry of pain and wheezes badly, passes wind, swallows constantly, sticks her tongue in and out and left to right in a strange pointy way, arches her head back, rubs at her eyes and nose and claws at her ears and hair.
Gaviscon made no difference – just constipated her, Zantac helped a bit but stopped working after a few weeks and she’s now on Losec mups tablets, 10mg a day and has been for nearly 2 months but they’re not working either. We had 2 good nights 2 weeks after starting Losec where she only woke a couple of times and went back to sleep easily – and I got so excited thinking there was light at the end of the tunnel – but then things went downhill again.
Without the medication she’s in a lot more pain and it takes much longer to settle her, but with the medication she still wakes constantly and I’m ending up breastfeeding her about 5 times a night as it’s the only thing that comforts and gets her back to sleep – most times nothing else works even though I try all other options first.
I’m pretty sure she’s milk protein intolerant so neither of us have had dairy for about 6 months as she’s exclusively breastfed. I also cut out soya, citrus and wheat from both our diets for about 3 months – reintroduced soya and it didn’t make much difference, then reintroduced wheat and after a few days she started having really bad trapped wind so have cut it out again. I’ve also noticed she gets bad tummy pain/trapped wind after grapes, blueberries, potato, pepper, aubergine and houmous…. it’s becoming a total nightmare trying to feed her a range of food as she reacts badly to so much – she’s mostly just eating apple, fish, rice, spinach and avocado at the moment.
Just don’t know where to go from here – can’t go on like this though as the lack of sleep is really taking it’s toll, every night is just torture. It’s been hard to get anyone to take the reflux seriously as DD is the happiest, friendliest baby ever in the daytime and the reflux doesn’t seem to bother her so much then. She’s also a very big healthy baby in all other respects so it was a huge struggle to get the GP to refer us to hospital and they kept trying to tell me it was behavioural and she was being naughty and not wanting to sleep even though I told them when she wakes up in pain she desperately tries to get herself back to sleep again and doesn’t want to wake up, but is just too uncomfortable.
She’s had a barium swallow test and a lung xray which didn’t reveal anything and is due for a follow up with the London Lewisham hospital consultant at end June and appointment at the Kings College London allergy clinic at the beginning of August but I can’t wait till then…. would be soooo grateful for some advice from anyone that’s been here and found a way to make it better.
I’m wondering whether I should increase the Losecs Mups dose (currently 10mg and DD weighs about 25lb), or try a different PPI or stop breastfeeding and put her on a formula? Or something else I haven’t thought of?? Any suggestions would be soooooo gratefully received. Oh have also tried putting her to sleep on her front, raising the bed etc etc – all the usuals but none of this makes any difference.
Thanks in advance for any advice!
Miriam
hi & welcome!
research all you can!yes, there are those who go ahead & medicate on their own, but this is only as recently as everything becoming available OTC.Are you going to a ped GI? I would start there.If ped GI won’t listen/rx how you like, then there are those who have found that a General Practioner is a good doctor to listen, etc.In the meantime,What I might do is this:(and, who am I? I’m ‘just’ a mother who has been on this board for going on 8 years! I am NOT a medical professional! I do not work for marci-kids, refluxsolutions or dr philips, though I wish I did, and I do not work for a drug company. Here’s more about me:I have a LOT to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong 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)1) after makihg my way through Groupie Intro, I’d make sure to read through 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=12) I would inquire about Zegerid or Bufferbabies or caracream max- this is all explained from the link- PPIs can take up to 14 days for you to see it’s full effects…so stay w/ the zantac when you start a PPI making sure to give it 4 hrs seperate from the PPI3) About being ‘off dairy:’this means you need to read ingredients and stay away from ‘hidden’ dairy, too. Is there a reason you’re trying this? If you think it’s helping then great, but many have found that they want to try the TEDTED Total Elimination DIet (in fact, I did do it!
). Reasons a breastfeeding mother might think her baby is reacting to something in her milk:*poop that is not ‘normal’ mustardy yellow, seedy breastfed baby poop*mucous in poop; mucous can look like: snot, jelly, cottage cheese, stringy like the inside of a banana*foul-smelling poop*stinky, foul-smelling painful gas*straining and grunting to poop and, when baby finally does poop, it’s softthe TED takes two weeks and then you start adding foods in to see what you CAN eat. (so you should see the results of you being completely milk-protein free after about 2 weeks. however, it might not be milk, it could be soy or other things- that’s why the TED is good)…Research all you can! You are your baby’s best advocate!Look for all posts by Erinntx! (be SURE to read her ‘sticky’ – the link is below)here’s some more light reading for you
:
MSPI ‘Main’ page:
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
Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
THIS IS REALLY IMPORTANT:
More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395
Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576
Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993
Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638
Another Sheri explanation- intolerance/allergy post:
https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442
Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1hellbennt2011-04-28 17:52:33
hi & welcome!
research all you can!the grunting & straining sounds like MSPI so personally I woud try the TED Total Elimination DIet (in fact, I did do it!)
the TED- total elimination diet– takes two weeks and then you start adding foods in to see what you CAN eat.Research all you can! You are your baby’s best advocate!Look for all posts by Erinntx! (be SURE to read her ‘sticky’ – the link is below)here’s some more light reading for you:
MSPI ‘Main’ page:
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
Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
THIS IS REALLY IMPORTANT:
More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395
Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576
Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993
Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638
Another Sheri explanation- intolerance/allergy post:
https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442
Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1Topic: Sad with feeding issues
I feel so bad for writing this but today I really have had thoughts about stopping BF’ing. It’s heart breaking as I did imagine feeding until Mckenzie was a year old, but it just doesn’t look like it’s going to happen. It’s been a long, rough day of Mckenzie refusing to feed – screaming and clawing me (I have the marks on my breast to prove it), in pain from gas ‘episodes’ etc. I expressed and seem to have about half the supply had a few weeks ago. Ugh. Just wanted to vent, feeling a bit low… I don’t see the pedi for 2 weeks. It’s gonna be a long 2 weeks…
Mckenzie is losing weight and I can’t seem to help her mckenziesmum 2011-04-22 06:37:53 hi & welcome!
breastfeeding?how are poops? regular mustardy-colored, seedy breastfed baby poops?or do you see mucous (can look like jelly, like cottge cheese, like the stringy part of a banana, like snot)?how is gas? painful?foul smelling?does baby strain & grunt to poop & then when finally does poop its soft?research all you can!I have a LOT to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong 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=853when you get a chance:please go to the top of this page, click on Settings and please then click on Edit Profile, then scroll down toSignature & put:baby (name if you want or nickname), age (can put month & yr of birth), meds, doses & forms of meds, breastfed or formula fedthanks!so glad you found us!
lauraTopic: Reglan woes
Reglan Questions
Hi,
My 4 month old has been on Reglan exculsively since 2 months old. His 4 month pediatric appointment was just a couple days ago. Since he’d been doing so much better and at this point his weight was beyond the dosage initially prescribed, doc suggested stopping Reglan alltogether. He then suggested switching to Prevacid (due to spitting up issues still) and also introducing solid foods.
Needless to say, I am posting b/c I now have a very upset, sleepless spitter and am back to square one. Doc has now put baby back on Reglan exclusively at correct dose for weight. I am no longer feeding solids (didn’t think it was a great idea for a baby w/ gi issues to begin with) and he is no longer on Prevacid.
I was so hoping I could stop all meds.
1) Anyone have a similar experience and have to re-start a med?
2) Have other docs recommended stopping meds cold-turkey or titrating instead (my older son also had reflux and his specialist titrated him off Reglan)?
3) How will I know if he truly doesn’t need the meds anymore?THANKS!
AlisonP.S. Also breastfeeding exclusively (baby won’t take Nutrimagen like older son) and torturing myself by depriving all dairy, citrus, acidic foods etc.
why do you need to stop breastfeeding?
I just want you to know that you do NOT have to quit breastfeeding if you don’t want to.you can alter your diet to make your breastmilk like formula. It’s called the TED Total Elimination Diet and it’s not so bad, it’s only two weeks – I did it 🙂of course if you want/need to do formula & quit breastfeeding, then of course you have support for that, too!whatever you decide!everything takes two weeks so if you were to switch you’d have to give it two weeks and then there are no guarantees- if you’re breastfeeding, you can also modify/alter your diet to make your own milk into an elemental formula of sorts- this is called the TED- total elimination diet-this also takes two weeks and then you start adding foods in to see what you CAN eat.here’s some more light reading for you:
MSPI ‘Main’ page:
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
Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126
More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395
Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576
Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993
Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638
Another Sheri explanation- intolerance/allergy post:
https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442
Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1Topic: Painful gas episodes!
Hi all. I would love your ideas… My Daughter has always had trouble with gas and has ‘episodes’ where she goes as stiff as a board, writhes in pain and screams so much she loses her voice. the episodes can last frrom a few minutes to hours. Some days are worse than others, but the days ae awful when she’s bad! She is miserable being awake, but can’t seem to stay asleep or get comfortable enough to get to sleep. I have cut out major dairy sources for the last few weeks and I am still breast feeding her. She has just started on Nexium for possible silent reflux as she is losing weight because she won’t feed for longer than 5-10 minutes (10 minutes is a big feed!!) without going as stiff as a board, screaming, pulling on & off etc. This morning she was so uncomfortable that she clawed my breasts and I have scratch marks all over my breast!!
So… I’m thinking it’s a dairy intolerance causing the gas but I am waiting to see my pedi in a few weeks…. Ideas? Thanks for reading!!
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