Home › Forums › Infant Reflux Support › HELP!!! › Lost…so very lost…
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November 2, 2009 at 2:18 pm #64412
Anonymous
InactiveI don’t know if anyone can help but i’ve reached a dead end and feel like there is nothing left to lose by asking.
My daughter, Lucy, was born July 15, 2009, 5 pounds 10 ounces. We had feeding issues from the get-go. We went from simalic to soy to nutramigen. She was having horrible gas and pop issues until we got her on nutramigen. Around that time (one month old), she began what I call “flipping out” when she ate. She would be ok for the first ounce or two and then after she would burp and the wheels would fall off the bus. She would thrash all around around, turn her head side to side, scream, arch her back and refuse to eat anymore. We went from being able to feed her about 20 ounces a day to barely getting 10 ounces in her.She was eating from Avent bottles and I switched her to Dr. Browns and that seemed to help. Her ped said she had reflux and put her on zantac (that was a joke and did nothing) so we got a referral to a Peds G.I.Lucy is now on Prevacid (compound) of 1.3 ml x2/day along with Mylanta of 1.5 ml x3/day and we thicken her 5 ounce bottle with 1 packet of Thick It. Things seems to have gone from bad to worse – I feel like nothing is helping this poor little thing. Once we added the Thick It, she’s gotten very backed up and moans all the time. She won’t sleep longer than 4 hours at a time, screams during every feeding and seems like she would rather eat her fist than take a bottle. It’s not like this every single time (there are dangles of hope here and there) but then it ALWAYS comes back and usually is worse.She’s just about 15 weeks old now and weighs close to 11 pounds so she is gaining, just very slowly. The docs all seems like “well, she’s gaining” and I hate that responce because it’s not an answer to all these issues.What can I do? I want to give her the prevacid x3/day after reading MARCI but I haven’t been able to get my G.I. on board. It’s never ending and I feel like I’m crying as much as the baby these days.Oh – and important – she’s not a vomiter, it’s all silent (and by silent I mean just the flipping out and screaming through all her feeding).PLEASE PLEASE PLEASE HELP! I have to believe there’s got to be something that could work!November 2, 2009 at 8:24 pm #64422hellbennt
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hellbennt2009-11-02 20:24:55
November 4, 2009 at 3:25 pm #64438InactiveHi there! Sorry to hear your frustrations, but I am going through a similar situation and I can understand about seeing improvements for a couple of days then shortly there after it is back to square one.
My son was born premature and I realized he had Acid Reflux because after his bottle he would arch his back a lot and start to cry. He never vomited, but when he did spit up (not a lot of that either) he would start screaming like someone was doing bodily harm to him. We have been on several (5) different formulas most of the Simalac and the last attempt was Elecare $36 a can, ouch! The ped told us to thicken the formula with Thick It or rice cereal because he was showing signs of aspiration. We have done all the precautions (keep upright for at least 30 min after feeding, sleep upright, on Prevacid Solutabs) and still he is having irritation issues with formula which also leads to the Acid Reflux. He is very hard to burp, another thing to help with Acid Reflux. He hates the bottle to be taken away from him, this leads to a short burp session of him crying and thrashing around until you just give up in trying to burp him and just put the bottle back in his mouth to calm him. His sleeping habits are pretty good, but the poor thing has never slept in his crib, instead he is in his car seat and we put the car seat in the crib.
We took him to the G.I doctor and she said “yep, he has Acid Reflux” No really!! She said since he was in the 50% range for uncorrected age, which is a good thing, that what we were doing is just fine and this is just going to have to work it self out which could be up to a year +. At this point I looked at her like she had something coming out of her head and thought to myself, “this lady is crazy if she thinks I can go through this for a year”, but then again she knows what she is talking about and I should be grateful that my child dose not have a more sever problem, right?
I decided to take things into my own hands and came to realize that everything I tried with him had a high corn base to it. All powder formulas have corn products in it and of course the Thick It is mostly corn. I did read that although rare some babies can’t process the corn starch just as much as they can’t process milk protein. After reading this I put him back on the Simalac Aligmentum ready to feed liquid and rice cereal (totally taking corn out of the equation) and it seemed to work beautifully for about a week and then came the trouble once again. He started to become really gassy again and got constipated really bad a couple of times (rice cereal to blame) so now I am faced with taking the cereal away and just hope that the pain involved with the Acid Reflux when he spits up stays controlled on the Prevacid (1/4 tab 2 times a day) or should I keep him on something that is causing his gas pains and constipation but keeps the spit up to a minimum. Each situation is very heart breaking since you feel so helpless watching your child go through this. I too find myself at a dead end a lot and not knowing what path to go down next. I have been told several times to stop switching him up on feeding combinations and to just stay with one thing, but I feel I am doing him harm by keeping him on something that the end result is pain. I am very lost as well and feel that there should be something that can give my son relief, but in the end maybe it is something that will just have to get better in time. My goal is to just try and keep him as comfortable as possible with different techniques and hope that my husband and I don’t go crazy as the end result.
Although I don’t have any advice to give on what has worked for me, just knowing that I am not alone with this issue helps me out. You might want to try the ready to feed Aligmentum without the thick it and keep her on the Prevacid for the pain of the Acid Reflux. That is the path I am going to try out for now. At this point….what do I have to lose?November 4, 2009 at 7:10 pm #64439Keymasterkjade, thank you for chiming in!!
I just want to mention for you to check out http://www.marci-kids.com to check your baby’s prevacid dose as it sounds fairly ‘low.’ also, you should be giving it on an empty stomach, followed by a ‘meal’ 30 minutes later…drs rarely, if ever know to tell you this- these are things we’ve learned along the way…
I have a lot more to say, here, in what is called ‘Groupie Intro:’
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hellbennt2009-11-04 19:11:17
November 4, 2009 at 9:06 pm #64440InactiveLucysmomma, I see that you are on compounded prevacid? I would try to get a different for like the solutabs to see if that helps. Compounds are rarely made correctly (this is coming from the wife of a pharmacist) and they tend to loose their effectiveness very quickly (I believe after 2wks when they give you a 4wk supply). Have you tried giving her the mylanta and does it seem to help? With silent reflux it is so much worse b/c they get the “burn” 2x on the way up and then again when they swallow it back down, you may want to research carafate to see if that will help with the healing as well. Take a look at Laura’s groupie intro under the introduce yourself section there is TONS of great info there. HTH.
November 5, 2009 at 9:42 am #64442InactiveActually after reading one of the posts I called his ped and she agreed to put him on 15mg daily, but no more than that. I do give it to him on an empty stomach, (20-30min before feeding him), so hopefully with the increase it will help a bit more with the break through pain.
November 5, 2009 at 10:07 am #64443InactiveWow Kjade – our little ones sounds like they could be twins. So much of what you wrote is exactly what we are going through with Lucy!
After I posted my first message, I ended up talking with her G.I. specialist that night for about 30 minutes and going over EVERYTHING that had happened since she saw Lucy a month earlier. She was really supportive of my frustrations (don’t ya just feel like you are hanging by a thread some days!) and thinks Lucy might also have esophageal ulcers. We’ve agreed to give it until Nov. 24th (her next appointment) to decide what action to take and to see if Lucy continues to gain weight and if we notice any improvement with the increased dose of Prevacid. She said I could bring her in now and they could do a pHprobe but I don’t think i’m ready to do that yet.I’m going to bring the MARCI info in with me to the appointment and inquire about switch to Prevacid tabs. Her compound Prevacid is unflavored so i know that helps with the stability but I too am nervous that it’s not stable.She has now been on the increased dose of prevacid for 12 days and the past two days, I’ve started seeing some slow improvement (dare I say! Probably a mistake because the reflux gods will come and bite me).We tried Mylanta and that didn’t seem to be helping at all so we stopped with that but are still thickening her bottle with Simply Thick. She was way way way gassy and really uncomfortable at first and I was ready to be done with that too but the G.I. told us to give her 1/2 teaspon of Milk of Magnesia 3x/day and that’s seems to have worked great because she’s back to her regular dirty diapers once to twice a day. With thickening her bottle, she’s now taking about 23 ounces daily, where as before 18 ounces was her high mark.Here’s what I want to know though – at point do you say “this is manageable” (even if they are still have symptoms) versus “no, you’ve got to do more”. I’m very afraid to put my 15 week old under some painful tests if she’s slowly gaining weight. She’s in the 5% percentaile for her age and is staying true to that growth curve so far but even on our good days, she will turn her head side to side the entire time she’s eating. It’s like playing a game of dodge the bottle.November 5, 2009 at 7:58 pm #64446Keymasterfor my son, I never (had to) used weight gain as any kind of measure as to how he was doing with his reflux. for him, he ate fine bcse he ate to soothe his poor burning throat and for him it was silent reflux, so it was a double burn…I could TELL when the meds were right- he was not shrieking/howling in pain and he was not miserable. he also had Sandifer symptoms from the pain and when he was medicated properly these lessened and then went away…
for him, we could TELL when he was miserable and we fought until we got his meds ‘better’ and then ‘right’Milk of magnesia sounds good, but you have to space it from the prevacid, I do believe, bcse you must space mylanta from prevacid. you can check by doing a search for Milk of Magnesia- go to the upper right hand corner of the screen & click on ‘search’ and then from the drop-down menu choose ‘all forums’ and also choose 6 months and OLDER so you can learn from all who have posted before you
you can always ask about carafate- this would be for an ulcerated esophogus- it’s not a long term solution- it is meant to be a short term solution- it’s like (note it’s LIKE it is not really!) a teflon coating for the esophogus and allows it to heal. it does need to be spaced apart from the prevacid…
November 10, 2009 at 12:47 pm #64503InactiveI feel that if the child is feeling any discomfort from the refluxing then it is not yet manageable. Right now mine still gets break through acid pain and that means the medication is not quite right. The reflux part will be there until they out grow it, but the pain part is what you need to manage. We just started him on a higher dose of the Prevacid and we will find out if that will work. If not the doctor wants to try him on Prilosec. We shall see what happens.
November 19, 2009 at 9:43 am #64603InactiveI can understand your frustration as well. Our little guy (who is now 7 months old) was gaining weight just fine, but was obviously in pain all the time. We went to a pediatric GI and she told us because he was gaining weight there was nothing she could do and we needed to learn how to sooth our crying baby…. I wanted to strangle the lady when she told us that!
But we made it through. We ended up on nutramigen RTF thickened with beechnut oatmeal. (apparently he has MSPI) He is on the prevacid solutabs twice a day and that helps him.So don’t get discouraged. If your baby is in pain, then you should try to find a way to help her.January 4, 2010 at 8:16 pm #65348InactiveHi!
We seem to be having the exact same problem. Our babies sound identical. Reflux is the most irrating, frustrating problem I think that could happen! lol Does your baby also take very short naps during the day? Approximately 20 minutes or so? It’s very agonizing for them.. and us!My daughter was on a low dose of Prevacid, then switched to Zantac&Reglan, and now back on a higher dose of Prevacid.. and still no relief. She finally has an appointment with a Pediatric G.I. so I’m hoping he is more help than her general pediatrician.Have you found any relief yet?January 5, 2010 at 11:25 am #65350InactiveI’m so sorry you are going through this Brittany ~ I know first hand what a nightmare it is!!!
I wanted to thank everyone for all their thoughts and inputs and for sharing their stories, it’s always so helpful. I also wanted to let you know how things are now. I’m thrilled to say that Lucy is going on almost TWO MONTHS on wonderful, chubby baby eating with no issues. Unreal and still hard for me to believe but it did happen for us.We worked with our GI to switch her from prevacid compounded to Nexium. The Prevacid did nothing for her. She takes 10 mg of Nexium every morning. We also switched her formula to Nutramigen AA (AA stands for amino acid – it’s the U.S. version of Elecare and Neocate). She’s a different baby now…happy, content and getting quite plump. It took two weeks for the Nexium to kick in and once she started on Nutramigen AA, it was like someone flipped a switch in her. So, in addition to reflux, she’s got a severe milk protein allegry.We still have a feeding here or there that she’s not interested in having but we never push and don’t stress it. But since the new meds and formula, her food adversion and trashing and screaming during a bottle are gone.I know this journey isn’t over but I wanted to let you know all this in case it brings so ideas or hope to you. I NEVER thought we were going to make it and i’m still scared sometimes that it will come back, and it might, but to experience two months of great feedings is like night and day.Good luck to all of you and god bless 🙂 -
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