Posted By Posting
Mar 22, 2009
tamaraann1978
Nothing Seems to be Working!
This is our first child & we discovered he had reflux when my dad (who's been staying with us) said he didn't think the baby was acting right after his feedings. We didn't know & thought it was just something babies did or that he was stretching. He'd arch his back & his muscles got very tight (esp his leg muscles), and he'd pull his legs almost to his chest. No spitting up or throwing up formula (he gets breast milk once every few days, as I'm not able to pump enough to produce enough for him right now), though. One night my dad was with him doing the midnight feeding & the baby arched his back so hard it popped. Pediatrician put him on prilosec which worked for about a wk but when we found out it could hurt his stomach, we took him off it. We didn't really want him on prescription meds so early (he's 2 months old) so we put him on Colic Calm gripe water. We also raised his mattress to a 45 degree angle; we swaddle him; we keep him upright for at least 30 min after each feeding; we switched his formula to soy...we've tried everything everyone has told us to do & he's still in pain-it's nothing like it was, but is it supposed to continue like this? It seems to be really bad at night & not so bad during the day...the other night he had twitches/spasms from 1:30am-6am while asleep. He sometimes cries while eating. Not getting much sleep as he needs comforting all night then is up all day. That is one reason I can't spend all the time I need to pump (and he's a biter, so breastfeeding wasn't working). What more can we do?
Mar 22, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I would try Nutramigen or Alimentum formula. Katie did horrible on regular formula and worse on soy.

Who told you that the Prilosec could hurt his stomach. It is really quite the opposite - reflux left untreated can seriously damage a babies tummy and esophogus. If it were me I would put him back on the medicine. I know it is hard to give little one prescription meds and we all felt strange about it. The fact is that these meds save our little ones.

I would go back on the meds and change formula and see how it goes for a while - at least three weeks. If there is no improvement I would see a pediatric GI. They are much more knowledgeable about how to treat this.

Sorry you are going through this - it is so hard - but it will get better.

Mar 22, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
There are other meds if you are not comfortable with Prilosec. Did they mention Zantac? I agree with Julie, untreated reflux can be bad news. If you are sure it is reflux then you may want to ask your pedi if there are other things you can try. I also agree that looking into one of the other formulas like Nutramigen could help. It was a lifesaver for our Ella. :)
Mar 22, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
Abigail started on Zantac at 2wks. I agree with Julie that reflux is really bad if left untreated. I know that it is hard to medicate a newborn but sometimes it is def needed. Abby did great on Prevaicd solutabs 7.5 mg 2x's per day and Neocate b/c she had a milk soy protein intolerance. She was so very gassy and congested on milk and soy based formula. I would def give Nutramigen or Alimentum a try and see if it helps. If you go back on the Prilosec check out this link so that you are sure that it is getting compounded correctly http://www.infantreflux.org/forum/forum_posts.asp?TID=4505
Mar 22, 2009
mommato3
So sorry your having to go through this. I know you hate to give him the meds but most of them are very safe and untreated reflux can and eventually will cause severe damage to their esophagus, FTT, food aversions. I would def. change to Alimentum or Nutramigen. My son is on Elecare (a super hypoallergenic formula) 50% of babies that have milk allergies or intolerances are also allergic to the soy as well (the proteins). Plus they are so much easier to be digested. It may take a little while on the new formula before you see a difference but it should help tremendously. Also beware the poop will change on the hypoallergenic formula. Ours became very runny and very frequent. It's OK. It is because their is not much to break down. After about two weeks on the formula my son's poop became a little more normal. i would get back on the medicine. I know it seems weird and you hate to give it to them so young, but they are pretty safe and is MUCH better than the pain and damage that can occur not on them. Sometimes the meds have to be changed around too and can be very weight sensitive. A pediatric GI is the way to go. I would ask for a consult. They are up on all the latest medicine, testing, etc. and can help reassure you. It sometimes takes a while to get into one so I would start looking for one now. Also an Upper GI test should prob. be done. It is very noninvasive and easy. It will detect any abnormalities in the esophagus, stomach, etc. My son had one at 4 weeks which showed significant reflux, slow stomach emptying, but no abnormalities. The women on this board are great for advice or questions. Glad to see you on here.
Mar 22, 2009
mommato3
So sorry your having to go through this. I know you hate to give him the meds but most of them are very safe and untreated reflux can and eventually will cause severe damage to their esophagus, FTT, food aversions. I would def. change to Alimentum or Nutramigen. My son is on Elecare (a super hypoallergenic formula) 50% of babies that have milk allergies or intolerances are also allergic to the soy as well (the proteins). Plus they are so much easier to be digested. It may take a little while on the new formula before you see a difference but it should help tremendously. Also beware the poop will change on the hypoallergenic formula. Ours became very runny and very frequent. It's OK. It is because their is not much to break down. After about two weeks on the formula my son's poop became a little more normal. i would get back on the medicine. I know it seems weird and you hate to give it to them so young, but they are pretty safe and is MUCH better than the pain and damage that can occur not on them. Sometimes the meds have to be changed around too and can be very weight sensitive. A pediatric GI is the way to go. I would ask for a consult. They are up on all the latest medicine, testing, etc. and can help reassure you. It sometimes takes a while to get into one so I would start looking for one now. Also an Upper GI test should prob. be done. It is very noninvasive and easy. It will detect any abnormalities in the esophagus, stomach, etc. My son had one at 4 weeks which showed significant reflux, slow stomach emptying, but no abnormalities. The women on this board are great for advice or questions. Glad to see you on here.
Mar 22, 2009
mommato3
Sorry it posted twice. It wouldn't post for some reason then all of a sudden it posted twice. I have also not figured out how to break my post into different paragraphs (skip lines).
Mar 22, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Please reconsider the meds. I'm one of those organic vegetarian, whole foods shoppin' Birkenstock wearin' mammas so I completely understand not wanting to medicate your tiny little baby, but..... Reflux can be the gift that keeps on giving. Damage to the lower esophageal sphincter and to the esophagus can set your baby up for a lifetime of reflux ( painful eating, food aversion, etc. ). I was upset doing it, but we started zantac at 6 weeks and prevacid at 7. I had to stop BFing because she is sensitive to so many things. She didn't do well on either alimentum or elecare, but we are grateful that the prevacid stopped her pain. The ladies here are a wealth of knowledge and have been through it all. Good luck.
Mar 23, 2009
tamaraann1978
Thank You
Thank you to everyone who has replied. You've all been super helpful & so supportive. It's been hard, esp since we're new to the area & don't have much of a support group here. I'm calling the pedi tomorrow & they do same day appts so I can get some answers, hopefully. Thanks again to everyone. Big hugs!
Mar 23, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
I agree with the other mommy's too about the medication. I never in a million years thought I'd have my baby on 3 different medications before that age of 6 months but it is absolutely necessary to help her. It's true that the long term damage caused by reflux can be devastating, especially to the esophagus causing erosion from the constant contact with acid. Not to mention it hurts! It took us a LONG time to find a combination of medications that works for our baby so hang in there. Also the back arching symptoms you are describing could be Sandifer's which is a type of neurologically based posturing that some reflux babies will do to cope with the pain. Our baby did it (still does sometimes). It is not permanent and will subside/go away with the right meds but as long as he is doing it you can be pretty sure you're baby is in pain. Some other non-medicinal options are: wearing your baby during the day. Our Baby Bjorn carrier has been a lifesaver. Also when he's a little older an exersaucer is the BEST toy for a reflux baby. It keeps them upright and gives you some hands free time. Some mommies have had great success with the Amby bed (http://www.ambybaby.com/) or the Tucker sling (http://www.tuckersling.com/). This is surprisingly common so there are a lot of products available. The formula change is a good idea - I think most of us are using hypoallergenic formulas. Good luck and keep posting to update on your progress. There is a wealth of experience, knowledge and support here.
Mar 23, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
By the way... what an amazing father you have willing/able to do night feedings with your baby!!!!
Mar 23, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
ALL of us hate medicating our kids so young, but most likely all of our kids need it BADLY. The acid going up and down several if not hundreds of times a day is REALLY hard on the esophagus and if left untreated puts kids at a really high risk for other things. Blocking the acid with a PPI is the safest way to handle it. The drug works only on acid producing areas, so it doesn't cross the blood brain barrier...it works only in the tummy. Silent reflux (no vomit) is even omre dangerous than plain old puking reflux as it goes up and down the esophagus...the puker only gets it on the way up... I hope it resolves itself soon...most kids do grow out of it, so think good thoughts!!
Mar 23, 2009
tamaraann1978
UPDATE!!!
A nurse at my pediatrician's office gave us 4 bottles of Similac Sensitive R.S. to try (LOVE my pedi-this will be the fourth formula we've tried now & with only one income, it's getting expensive). We've gone back to the prilosec as of today, and we got a small bottle of Axid to try. We were told not to use the Axid until Friday...that is when we go in for his first set of shots & if things haven't improved, the dr will decide the dosage then. Also, if things haven't improved by Friday, we were told we'll be sent to a pedi GI. I'm so happy I was told to look for a reflux support group, as it's not something I would have thought to do otherwise. I saw the AR Pillow ad last night & this morning propped him up in our bed (after another long night of no sleep) against my husband's firm pillow so he was swaddled tight & sitting upright. Got about an hour's worth of sleep. Nurse today mentioned the pillow so I think we're def going to get one. Does anyone have experience with the Numi Med pacifier med dispenser? We got one a couple days ago & I tried using it with the prilosec tonight but he wouldn't take it. Maybe I'm doing something wrong? I was putting the meds in his bottles which works great except when he falls asleep before the feeding (like he did tonight) & then I have to toss the formula plus medicine. But if he won't take the medicine in the pacifier, I have no choice. Sorry...I'm running on two straight days of no sleep & I realize I'm rambling a bit. I just have no one else to talk to, really...my saint of a dad is going back to Arizona tomorrow & my support system is going with him. Thanks again everyone!
Mar 24, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Never tried the dosage bottle, but used a syringe which, as long as you can hold them down, works fine. The PPI's must be given on an empty stomach in order to work (at least on ehour after last feed and at least 15 min prior to next), so putting the meds in bottles of BM or formula pretty much means you might have just saved yourself the trouble and money. And no other meds for 2 hours either side of the PPI dose.

Have you tried dreamfeeding? Most kids will latch on the to bottle asleep, eat very slowly (no air intake = no burp needed usually) This also can help mom and dad catch up on sleep!

Ramble away - we all fully understand - we ran on no sleep - literally - for 6 months at least, then we started to be able to sleep in shifts.

Mar 24, 2009
tamaraann1978
Prilosec on an empty tummy?!?!
I had NO idea the meds had to be given on an empty tummy. It doesn't say that on the bottle-just that it needs to be refridgerated & the pharmacist at Walgreen's said we should put it in the formula. AAAARRRRGHHHH!!!! Is that why the medicine didn't seem to be working the first time around???? THat really p*sses me off...why would no one tell us this? The pediatrician didn't even say that! Finally got him to take the pacifier-he just didn't like that it was cold. He spit it all out the first time.
Mar 24, 2009
mommy2k
I just found out that prilosec had to be given on an empty tummy too. We've been giving our lo it for about 6wks now right after feeds and at night but not making sure it's on an empty stomach so we've been having problems with it working. Found out on here to give it to him that way. Lots of useful info on here that is going to be a life saver. Hang in there and keep chatting with everyone for support.
Mar 25, 2009
tamaraann1978
Jerking?
Sorry if this is full of mis-spellings but it's been another long night (currently 5:15am), am sitting in the dark & i can't find my glasses. Just wondering if it's a normal part of reflux to have severe twitching/muscle spasms. Not sure if that's what they really are, but that's best way i can describe it. I know babies twitch naturally, but thse are not that. He does it during feedings EVERY time; if not all the way thru feeding, then 90 percent of it. Sometimes, he jerks so hard the bottle goes flying. His legs & arms jerk like spasms...reminded me of an interview i'd seen w/ michael j fox a few months back where it's just involuntary jerking. More like flailing, really. This continues thru the feeding to 45 min afterwards. Since he's been on the new formula (since monday) he's "only" been doing it for about 20-30 min aftre feedings (but still all during too). Seems to get worse at night, as everything else does. Even tho we swaddle him at night, he continues to flail, pushing really hard against the swaddle blanket. We've rigged up his bathtub since it has the incline & an insert to keep his knees bent so he's upright now & that seems to help...ordered the AR bed which should be here friday. But he continues to flail & cry in his sleep...just wondering if this is all a part of the process or if something else is going on? THought it might be Sandifer's as one mommy suggested but he's not really doing the head & back arching thing naymore. He does a little bit but nothing like he was.
Mar 25, 2009
mommato3
My son did this all during his feeds. He would almost go crazy, flailing, jerking, etc. I showed the pediatrician she put him on Prevacid. It didn't stop that. Evtually we got our Prevacid dose upped a BUNCH and started Elecare. All of this bucking, flailing, jerking during feeds stopped. He still cries during feeds and refuses the bottle. He still arches his back after feeds though but those seizure type things while he's eating have stopped. I don't know what they were. No one ever told me but they did get better as we got him on a better dose of med and formula. He is still in pain and we are currently waiting some testing. I would say this is all part of the reflux/and or formual intolerance issues. Best of luck too you. Those movements scared me to death and it is so hard to watch them in pain.
Mar 25, 2009
mommato3
We also use to swaddle him while we fed him so he wouldn't knock the bottle out.
Mar 30, 2009
tamaraann1978
Update
Dr said he does not think jerking, etc is Sandifers...said GI not necessary yet as we haven't tried "everything"...new formula seems to be working (Similac RS) & started Axid (1 ml) along w/ Prilosec (same dosage of 2.5 ml) on Friday, THINK it is working as Hunter has been sleeping a lot better but part of me thinks this is too good to be true & maybe he's just catching up on all the sleep he missed due to reflux. Tho I doubt that's the case, but I just am afraid to get my hopes up again that maybe we've found what works. Also, anyone have any experience w/ that AR pillow? Got ours on Friday & did not realize he wouldn't be able to be swaddled w/ it...due to his spasms, he can't not be swaddled & b/c of the safety straps, that's not really going to work so well...they're out of that sleeping bag thing they sell as an accessory but not sure we could even afford that, after the $60 spent on the pillow. *sigh* So tired.
Check with your
doctor first!