desperate for any tips!!

Casey - posted on 01/26/2009 ( 32 moms have responded )

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Hello,
My name is Casey. My son, Austin, is 8 weeks old today. On Thursday, January 22nd we rushed Austin to the ER because he couldn't hold down ANY fluids. After calling the children's clinic we use, and them having us switch formula so many times and none agreeing with him, we decided it best to take him. Once admitted we learned b/c of them making us switch formula so much, and from not agreeing to let him have an earlier appointment than his 2 month one, which was already set, he was so dehydrated he almost died.
They did several tests on him including an upper GI we were informed that he has moderate/severe reflux and they put him on Zantac and Reglan and switched his formula yet again to Isomil Soy Formula. He doesn't seem to be agreeing with it either, nor do the meds seem to be helping much..what should I do? I'm so scared cuz I don't wanna lose my baby! He cries so bad cuz he's in so much pain in his stomach yet the docs refuse to let us give him anything but mylicon gas drops.
Is there anything anyone else out there has tried that has worked? A certain formula? We've tried Parent's Choice, Enfamil Lipil, Enfamil Gentlease, Enfamil Lacto-free, Similac Advance, Similac Alumentium, and now Isomil Soy Formula. I have a very severe nut allergy and am soy intolerant so idk what kind of formula I can use. Plz somebody help! My husband and I are desperate for advice and cannot find a single doctor to help us in any helpful way.

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[deleted account]

I feel you! Mason screamed in pain his first 7 weeks! He was on 3 meds at once when he was 4 weeks. His pediatrician referred us to a PGI because he tried everything and it was out of his hands. we had a 24 hr ph study done and mason was diagnosed with both acid and non acid reflux. the meds that ended up working with him were erythromycin and axid. One of the side effects from the erythromycin helps with the reflux. Dont let the dr's tell you to just give him mylicon. Ask them to refer you to a pediatric gastroenterologist or find a dr who will! A ph study will help determine how bad the reflux actually is. Mason is 10 mos and we're still battling it bringin him to the PGI at least every 3-4 mos for a reevaluation

Julie - posted on 02/01/2009

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My son is on Alimentum and doing well, but I have a friend who's daughter wouldn't tolerate any formula (including Alimentum as well) but did great on Enfamil Nutramagen. Zantac did not work for us either, but once our GI switched him to Prevacid he became a different baby within 24 hours, and within a week he was eating fantastically! I have several friend's who's babies were on Prevacid as well and it is like the miracle drug for reflux.

Shanna - posted on 01/26/2009

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Honey, I feel your pain.  After doing much research myhself, I found that Nestle Goodstart with comfort proteins (Whey proteins) helped many babies with reflux and colic.  Spoke to his dr and she said it was worth a try.  We tried it, litterally within the first feeding, we could see a change.  He wasnt fighting to eat, he just ate.  Liam is also on Prevacid for reflux.  Sounds mainly like my colicky baby.  Babies are stomach oriented for the first few months.  Thats all they know.  I hope this helps.  They have soy and milk based.

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32 Comments

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Marisol - posted on 09/16/2013

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my baby was diagnosed with reflux and he is only 5 weeks old. Our doctor recommended nutramigen by enfamil. It worked for my son from day one.

Sarah - posted on 01/12/2013

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Gerber gentle or smooth. Keep going to the doctors now if it is the sames one doing this you may need to go to a different hospital and see what they do. Other then that I do not really now. But just get other doctor opinions.

Christina - posted on 01/07/2013

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I have heard enfamil a.r is the best its made for reflux and works better than adding rice cereal to formula

Refluxmomme - posted on 11/10/2010

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I agree with the others I would really research the Reglan. Reglan is not fda approved for pediatric use. Actually no ppi or h2 blocker is approved for kids under the age of 1, but I would rather give my baby something safe that at least I know the fda approved for children just a bit older than her than something that has horrific side effects. Also we had to use soy for our lo when she was an infant we also thickened with rice cereal. Now that she is older and still has reflux and aspiration (among others) we thicken the milk with rice cereal and water with simply thick.

Christina - posted on 11/08/2010

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I agree...Lilly spits up 50% of the time during tummy time. She gets plenty of tummy time on MY tummy though lol she likes it much better and isn't so flat as I'm in a recliner and strengthens her arm and neck muscles this way. I do give her regular tummy time as well starting mostly when she hit 4 months old (and she is only almost 5 months old) but she still does not like it much.

Christina - posted on 11/08/2010

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People need to give babies tummies time to adjust to new formulas! You're not going to know if they're working if you switch right away. Now I cannot tell you about formula as I breastfeed but my daughter was put on Cimetidine(Tagamet) and that helped out soooooo much. She stopped the crying in pain, gagging and choking on the spit up and so on. AND there are basically NO side affects! She never go any at all! She's not almost 5 months old and so I did a trial and took her off of them, so far so good other than a bit more spitting up but she seems happy enough! Good luck hon, also if you have not done so already, do do your research on all the other ways to help with the reflux! Before Lilly was on meds I would hold her in a straight up and down position as this seemed to calm her down best. I also never laid her down after a meal, I gave it at least 20 minutes (even at night when I wanted/needed sleep) and when I did lay her down it was always at about a 30 degree incline. Either a swing or a bouncer bent to be at a higher incline. I only laid her flat change diapers which I tried to do quickly and if possible would roll her to the side to wipe rather than lift legs up and squish belly. Also avoid tight diapers and tight pants etc that would squish belly! I'd rather have to do extra laundry than have my Lilly in discomfort that could be prevented. Oh and make sure to hold your lil one so that he's not laying down while eating as well as afterwards. And DO burp!! This is all I can think of at the moments. Good Luck!

Sarah - posted on 11/07/2010

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Hi,
My 6 month old too has suffered since 2 days old first we were told it was colic then lactose intolerant. Now he has many intolerances. my son has been on Nutramigen and neocate which are both lactose free milks, they didnt work for my son as he didnt like the taste but they may work for yours. my son is currently on SMA WYSOY without any complications. After 6 months of misdiagnosis he is now waiting for an appointment to see a GERD specialist. He is on gaviscon in his milk feeds and Ranitidine 0.8mls twice a day> He also needs movicol to eleviate constipation from the drugs, paracetamol and neurofen to take away the pain from his persistant sore throat. he has wrongly been diagnosed with bronchal asthma twice due to the wheezing that is persistant> We are lucky enough to live in the UK and have the NHS so its not costly for us. We have a dietition and are eliminating foods that aggrevate the condition. my son has only been on medication for 2 days and for the first time he has slept for more than 2 hrs> Try the 2 formulas i have suggested they may work> good luck

Terri - posted on 10/05/2010

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My son is on a product called Simply Thick. It is added to his milk/formula. it works like pablum/rice but is easier on their tummys for the realy young ones. He has been on it since he was a week old. He also has to sleep elevated (30 degree angle) and can never lay flat...even to change diaper.
Im in canada 9PRODUCT IS AVAILABLE IN THE usa)and the meds the doctor put him on are Domperidone and Ranidine both 3X daily.

Barb - posted on 09/03/2010

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have u tried losec or opermizole? talk to a pediatriion 24hr childrens stollary in edmonton thats where my son got diagnosed he still has problems but at least heseating im taking him back there on sept 13\

Victoria - posted on 07/14/2010

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Carnation Good Start worked well for my first GERD girl, though she was mild and grew out of it like a "normal" baby. My youngest, Ava, still takes Prevacid, Zantac and Miralax to manage her GERD and we used Similac RS with her and it worked well. Please be VERY cautious with the Reglan, my Ava had horrible side effects from this medication, it can be very dangerous, monitor him very closely for any changes. In my experience, this is a last resort and as soon as you think he is controlled you should work with his doctor to try to get him off it, please do not take that medication lightly. Also try Gentle Naturals Homeopathic Teething Drops once he is old enough, they have ginger and chamomile and really work to calm them down. Also, be sure he never has a chance to be on his back. My girls slept in their swing, bouncy seat or car seat all the time and whenever he is held it should be upright or at least at an angle, the more you let him lay back the more the acid rushes up. The doctor always said tummy time would be ok because they don't reflux on their belly but I actually did not find this to be true. Be sure everyone knows how to hold him and don't lay him flat for any reason, that's when they tend to really have it hard. My thoughts are with you, I know all too well the trials of finding the right mix of medications, diet and lifestyle modifications that will help. Remember, new babies only cry if they are hungry, messy or in pain so don't settle for a constantly fussy baby, knock on as many doctors' doors as you need to until you have a happy little guy! With my first one I made the mistake of settling too quickly, I learned from that lesson. Your baby should be content and happy, anything else and his regimen is not right. I hope this has helped, good luck!

Kelly - posted on 07/05/2010

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My son is a preemie 7 weeks early. He has reflux very bad. We have at least an episode of projectile vomit every couple of days plus the excessive spitting up daily & arching his back & screaing. My doc put him on zantac 2 ml twice a day, it helps some. She also has us put a tablespoon of rice cereal per 4 oz of formula. We have tried Similac sensitive, similac sensitive rs, enfamil gentlease, good start gentle, we are still looking for advice for this. I am thinking of trying Isomil sensitive... He does seem to do better or ready to eat types though..

[deleted account]

After 6 months of misery, I finally did my own research and found a really great pediatric GI doctor. Her advice did not match up with our pediatricians advice at all. I would advise you to find an excellent pediatric GI doctor that can follow up with your son regularly until he is doing better. Also, I would have to agree with a previous post about researching Reglan. I don't think that you need to panic, lots of babies have been on it, but you need to research it and find a good doctor as soon as possible.
And just know that even though 10 months from now seems like an eternity, chances are that he will be perfectly happy, healthy and normal by his first birthday.

Tori - posted on 03/23/2010

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My son also has reflux after having an upper GI to figure it out, but our pediatrician has been great! She put him on Similac sensitive RS and it has really helped him as far as spitting up and choking from spitting up! It did constipate him for about the first week though. I used mylicon drops, but also they told me I could put half a teaspoon of dark carose syrup in his 3 oz of formula and that seemed to do the trick for his constipation! He is also on Zantac but I started it after the new formula n it seems to be making him worse so im stopping that! Hope this hels someone!

Leah - posted on 01/24/2010

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my daughter was on those medicines as well but her GERD wasn't as bad as most she didn't do the arching in her back or the painful cries for hours but she bing ate like crazy and spit up all the time i put her on the gentlease formula and worked out ok for her but i took her off the meds after reading that long term use of reglan caused tremors and CA's medi-cal wouldn't cover the cost of her zantac and it was almost $100 for only a months supply her spitting up never went away until she was about 1 1/2 when i switched her milk to acidophilous milk but then WIC stopped paying for that kind so now she's on lactose free but she's not lactose intolerent cause she eats cheese ice cream yogurt and every other dairy product fibne just for some reason she can't digest the lactose in milk and that was probably why she kept spitting up her formula! hope you find the right formula for your baby but the mesd don't really help they didn't help Aurora much either one reason i opted not to continue. hopefully your baby will be more agreeable with lactose good luck!

Mary Lynn - posted on 01/08/2010

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Most reflux babies have a milk, soy protein intolerance. Our little guy did not start to improve until we put him on Nutramigen ready to feed formula. thickened with beechnut (soy free) oatmeal. He is also on prevacid twice a day and we stopped the zantac b/c it was not helping at all. Hope this is helpful.

Misty - posted on 12/09/2009

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enfamil thickend formula the soy based formula still has milk protines in it. the babies formula should be thicker the the other formula if u cant find the thickend formula put a little of the baby cereal init and that will make it thicker.

Rachel - posted on 11/11/2009

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my son is 17 weeks old and has gastroesophegal reflux disease he often screams in pain and brings up his knees hes stopped breathing 3 times i changed his formula to sma staydown and its worked wonders hes still sick a little but not as severe as before hope tha helps if you have any more questions please ask me because i know how hard and frustrating it can be

Katie - posted on 10/22/2009

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if the price of the formula is a problem you can try to get a prescription for it from your doctor and either get it through a company or take it to the WIC office. We have done both for my son who gets the majority of his calories from Pediasure. I would say try to get it through a company first because they will ship it right to you're house, which is much easier than getting it through WIC.

Emily - posted on 10/22/2009

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Hi my name is Emily, my son was a preemie and has severe milk protein allergy and severe reflux....you should talk to your doctors about either Elecare or Neocate, they are both hypo-allergenic formulas, but unfortunately they are extremely expensive and I believe may only be available through prescription ( we have to order ours from a medical supply facillity) There is also an over the counter formula made from Enfamil called Pregestimil, this is a previously broken down formula that is ment to be easier on you babies stomach (although we had no luck with this formula because of the milk protein allergy) it may work for you and is a little less costly. I hope maybe this can help you and your family a bit!

Katie - posted on 09/13/2009

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I can certainly empathize with you. My now 18 month old almost died due to dehydration. After a week and a half in the ICU it was determined that he had to have a Nissen Fundoplication. Unfortunately we didn't have a choice, the surgery does keep everything down but it also causes many new problems. I would definately reccommend getting into a pediatric GI. I also have heard of a homemade formula, although I'm not sure where to find it. Maybe google homemade formula for GERD babies. I'm told that works quite well. My son was also on zantec and reglan, that didn't really help his symptoms. He is now on Prilosec and is doing much better than before. Don't be afraid to tell the doctors what you think your child needs. Mommies always know their children the best and sometimes you have to demand things. I would also suggest getting in to see a speech or occupational therapist just so you can stay on top of any oral aversions your child may start. It's never too early for that. Good luck and try to relax, being stressed out will not help your baby get better (I know easier said than done).

Deb - posted on 05/13/2009

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Zantac worked really well for us but we also added cereal to my daughter's bottle. The Dr. told us you could add as much as a tablespoon per an once. It helps keep it down. We started with rice cereal but that made her constipated then we switched to oatmeal, that worked well.

April - posted on 04/01/2009

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My now 3 yr old was a GERD baby. I have been where you are sweetie but you gotta keep trying. We had luck with Alimentum and Zantac. Try smaller, more frequent feedings and do not lay the baby down right after eating. We had to put William in a bouncy seat for 30 mins after he ate and then we could put him to bed. Good luck to you and little Austin! =D

Anna - posted on 03/02/2009

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Many children that are intolerant to milk are also intolerant to soy. You can consult w/ your GI about changing over to a milk/soy free such as Nutramigen or Alimentum. They are pricy formulas, so have your GI or Ped. write a letter for your insurance company to cover costs as it is medically necessary. If those don't work either, b/c they have a small amount of casein in them, your child may need a prescription formula like neocate. Also Zantac is weight sensitive, so as your baby grows the does may need to increase. If that doesn't work you can talk to your dr. about switching to a PPI (proton pump inhibitor, such as Prevacid or Prilosec. Reglan is prescribed to empty the tummy faster, but please do your research on it. It is only FDA approved for use for 12 weeks and can cause side effects. I chose not to put either of my refluxers on it, just fed smaller amounts more often. Good Luck, hope your little one is feeling better soon.

Lucinda - posted on 02/08/2009

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Enfamil AR works good too.  My 3 year old had reflux as an infant as does my newest daughter, the AR (added rice) worked for both of them.  They also both were on Zantac.  My older daughter tried the reglan but it didn't help in fact it only made thigs worse.  Another thing to try is the type of bottle Dr. Brown or Avent actually helped because it created less gas and therefor burping wasn't as painful and didn't cause the reflux to be quite as bad as with some other bottles.  There is also a wedge pillow I bought that gave me a safe place to lay them down, just search tucker sling on the internet.  I know it is frustating and very scary to go through, I stayed up many nights just to make sure my daughter was still breathing.  If I can be of any further help or if you just want someone to talk to please feel free to contact me.  Hope some of this helps you and your little one.

Lucinda - posted on 02/08/2009

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Enfamil AR works good too.  My 3 year old had reflux as an infant as does my newest daughter, the AR (added rice) worked for both of them.  They also both were on Zantac.  My older daughter tried the reglan but it didn't help in fact it only made thigs worse.  Another thing to try is the type of bottle Dr. Brown or Avent actually helped because it created less gas and therefor burping wasn't as painful and didn't cause the reflux to be quite as bad as with some other bottles.  There is also a wedge pillow I bought that gave me a safe place to lay them down, just search tucker sling on the internet.  I know it is frustating and very scary to go through, I stayed up many nights just to make sure my daughter was still breathing.  If I can be of any further help or if you just want someone to talk to please feel free to contact me.  Hope some of this helps you and your little one.

Wendy - posted on 02/03/2009

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Casey, sorry to hear about your baby's inability to keep food down. My son's reflux is not as severe, but it has definitely been hard getting him to gain weight. I've tried all the formulas you mentioned and none worked....unitl I tried Similac Sensitive RS. The difference was amazing!! It can be pricey. I get it at Target at 2 for $11. He takes about one bottle a day. It comes ONLY in pre-made liquid formula. No powder. Apparently powder and liquid make a huge difference in formula. I also have my son on Colic Calm. It's a homeopathic medicine. www.coliccalm.com

If you try any of these things I would love to hear if it works. The Similac Senistive RS was definitely a big help. By the way, the RS means Rice Starch......which makes the formula thicker and helps stay in the stomach. Let me know if you have any questions.

Shanna - posted on 01/26/2009

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Honey, I feel your pain.  After doing much research myhself, I found that Nestle Goodstart with comfort proteins (Whey proteins) helped many babies with reflux and colic.  Spoke to his dr and she said it was worth a try.  We tried it, litterally within the first feeding, we could see a change.  He wasnt fighting to eat, he just ate.  Liam is also on Prevacid for reflux.  Sounds mainly like my colicky baby.  Babies are stomach oriented for the first few months.  Thats all they know.  I hope this helps.  They have soy and milk based.

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