Home › Forums › Infant Reflux Support › HELP!!! › Please READ guys.. im so lost…. need help
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December 6, 2007 at 2:36 pm #46199
Anonymous
InactiveGuys.. we are just so out of options here….. Im so worried about my little man… I would really like some opinions.. im open for anything… Let me start at the beginning for you. My LO started on Similac advanced in the hospital.. seemed fine.. two weeks later, he started spitting up more and more and gaining very little weight… doc then placed him on Enfamil A.R for the spittin up.. Well he gained weight good on it.. but started cryin and cryin and cramping a lot… So then doc placed him on Nutramigen and Zantac .07ml 3 times a day. The crying and hurting seemed to get better but the throwin up got worse and worse… then prevacid was added… 30mg a day.. that seemed to hurt him worse so I stopped that.. then he developed a rash and diarrea… doc then referred us to a Pediatric Gastro doctor.. they did a scope and a biopsy and diagnosed him with Milk/Soy protein intolerance and put him on Elecare formula.. they also did a Ph probe study and said he has reflux but not ACID reflux.. but I still don’t belive that.. So now hes been on this Elecare for about a month and still doin zantac 3 times a day.. and the puking got worse still.. He throws up wen he burps and he even throws up up to 3 hours after his bottle sometimes.. so then they sent him for a delayed gastric emptying study… doctor called and said he has some delay and wanted to medicate him for that.. (I still don’t belive that’s the prob kuz I read that most babies with delayed emptying don’t really get very hungry often kuz they feel full all the time… my guy ALWAYS seems to be starving) SO she suggested Reglan, wich I turned down because im terrified of the stuff.. iv heard so many bad things about it.. I know its worked for some people but im so scared of the side effects I don’t even want to try it.. so she put him on the Erythromycin .5mls 3 times a day.. he has been on that for a week tomorrow and honestly I don’t see any improvement.. He still just acts so MISERABLE and cries so much.. And throws up so much.. and the throwing up is botherin him now kuz he cries when he does it. Doc told me not to put cereal in the bottle.. but iv heard that it helps the throwing up.. but im scared to do it kuz doc said no..But honeslty all these dam docs haven’t done ANYTHING that helped him so y should I even listen to them.. he is still the miserable pukey baby that he was before all the doctors tests and doctors bills and expensive formula and medicines… He is 10 weeks old and only weighs 9lbs.. (was born at 6lbs 7oz)… I just want a happy healthy baby and I cant get him that way. Im so aggrevated and broke and im to the point where I just wanna take him off everything kuz nothing is helping.. I just think they are still missing something.. even tho hes been tested for everything…, Maybe I should just try the cereal on my own.. but then if it hurt him, id never forgive myself… Im so confused… Please help me help my little man…. Any suggestions are welcome….
December 6, 2007 at 4:11 pm #46206hellbennt
Keymasterwhat I would do first is:
1) calculate proper erythromicain dose (I have no idea what that would be, but maybe post elsewhere & ask & also do a search- this has been discussed a lot lately)2) calculate the zantac for 10mgs per kilo (not bcse I’m telling you to- read here: Zantac dosing- my/other’s question: https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914 )3) after giving the ‘proper’ doses of these meds, I would then try a PPI again- the ‘proper’ dose and timing of the medafter all of this, I would then revisit…I hope that this helps and that others post their opinions as well!December 6, 2007 at 9:31 pm #46221Anonymous
InactiveIf the vomitting didn’t seem to be bothering him, I wouldn’t worry about it. Easy to say, hard to do, I know. Kaelyn was a horrible spitter, and had trouble gaining weight because of it, but once her reflux was under control, the spitting no longer bothered her. It just became a laundry issue. It was annoying to constantly be doing laundry for her, but I was so happy that she wasn’t in pain that it was fine with me.
Elecare is pretty thin, so it’s actually perfectly normal that he throw up more on it than other formulas. If he’s MSPI, it’s probably the best choice for him despite the fact that it leads to more spitting. If he’s still in pain, then I’d say it must be acid reflux because it’s causing a problem.I agree with everything that Laura said. I will tell you our experience (although I’m not really qualified to suggest that you go against your doctor’s advice). Kaelyn is allergic to milk and had problems with DGE (although she was never officially diagnosed). We tried Reglan and bethanechol and never saw any improvement in her spitting (although many others have had success with them). Like your son, she was always hungry so we had trouble believing that it was truly DGE. On the flip side of that, she would have orange spit up 12 hours after eating sweet potatoes, so it certainly seemed like there were problems with emptying. Kaelyn was such a huge spitter that we ended up thickening with cereal. We started with rice and ended up switching to oatmeal. We had to experiment with the amounts until we found one that actually helped to slow down the spitting. She needed 1 Tbsp per ounce before it made a difference. Once we started with that, she actually started keeping down enough formula to start gaining weight. She was still a huge spitter, but the cereal made a drastic difference for her. Of course, we also think that starting cereal so early may have triggered her wheat allergy. So, it really is a catch 22, and you have to go with your gut instinct on what’s right for your child.December 6, 2007 at 10:15 pm #46224Anonymous
InactiveHe does seem to be in pain alot.. arching his back while eating and wen he throws up he cries… he is 10 weeks.. should i try cereal in the bottle or is he too young? what about the cereal in the jar? im willing to try anything..
December 7, 2007 at 11:49 am #46239Anonymous
InactiveIm sorry to hear things are so rough, and I know exectly how you feel. When my son was only a week old we were drove to the hospital in an ambulance because he stopped breathing and were there for 8 days. Turned out he coked on his spit up and some got into his lungs. They found out after tons of tests that he had severe acid reflux. He was put on Bethanochl and zantac, had to be upright at ALL times, and we had to thicken his food. He was put on an oximeter, an apnea moniter, and oxygen. Also they added caleries to his formula to help him gain weight. We elevated his bed, kept him strait up when feeding him, and 30 minutes after. We thickened his food with Simply Thick, Necter consistency. All of this helped so much. It was a lot to do but he is now almost 8 months old and doing well. He still has acid reflux but we are able to slack a little on the things that we do. Also if you dont agree with your doctor you should find a new one that will listen and work with you. I hope this helps a little and feel free to ask anymore questions.
December 7, 2007 at 11:54 am #46240Anonymous
InactiveAlso to your question about the cereal. My docter told me that I could give my 1 week old cereal to thicken up his formula. It just turned out that my son did better with the simly thick because it made it thicker.
December 7, 2007 at 12:09 pm #46241Anonymous
InactiveI tried thickening his bottles with cereal after trying enfamil a.r. and it worked well for a month, but once I started the prevacid at 30mg/day he seemed to cry with the cereal, so now he is on similac alimentum rtf with no cereal and prevacid 30mg/day and doing good. He stills has his occasional bad days and still spits up a lot, but the crying is so much better. I would suggest trying the prevacid again, especially since you were able to get the correct dose with no problem, I had to go to 3 different docs before I managed to get that dose.
Hope this helps and good luck.December 7, 2007 at 1:12 pm #46246Anonymous
InactiveHow much cereal should i try? he drinks 4 ounces of formula.. i put two teaspoons of it in his bottle a while ago and it didnt seem to help much… was that not enough?
December 7, 2007 at 2:59 pm #46254Anonymous
InactiveIm just telling you what my doctor told me. He said do 2 teaspoons for every two ounces. But like I said before this didnt work for my son and we had to use simply thick. He still spits up but WAY less than before. So if it still doesnt work ask your doctor what he thinks about trying simply thick.
December 7, 2007 at 3:26 pm #46256Anonymous
InactiveHi there. I’m sorry things are so bad right not. I’ve been there – twice – so I truly know what you are going through.
I would definitely ask to try Prevacid again. Zantac is pretty uselss for most of our reflux babies because it is such a weight sensitive drug….babies quickly outgrow their dose and they often plateau on it.Prevacid often causes some cramping initially and that may be why your son seemed worse on Prevacid. My son also had cramping for the first two weeks. This side effect usually passes once the body adjusts to the medication.Dosage is very important, both for Zantac and Prevacid (or other PPI’s). Most doctors under dose and that’s why our poor reflux babies continue to suffer. Please check this website and print and fax (or take) the info to your son’s doctor and try to get him on an adequate dose of Prevacid or Zegerid. http://www.marci-kids.comMy son was also MISERABLE until he was finally put on a good dose of Prevacid. By the tenth day he was a new baby,
even despite the cramping which usually only lasted an hour after each dose, and that cramping stopped after two weeks.Cereal in the bottle did not help my son (or my daughter). He was also a huge puker and he puked up anything I fed him, even breast milk and solids. It does help some babies, but it makes things worse for many babies as well….so I’d work on the meds first and then think about cereal later….he may not need it….The theory about cereal is that it may help keep the stomach contents down and therefore keep acid down, but if your son is like mine and throws up anything he eats then cereal probably won’t help anyway.Good luck. I sure know how hard it is.
I hope things improve soon.December 7, 2007 at 5:06 pm #46258Anonymous
InactiveI would personally try a PPI again. If not prevacid, then maybe zegerid. We did oatmeal to thicken b/c she couldn’t tolerate rice, but we did it b/c she was choking on feeds. I would really try a PPI again. Good luck. Sorry you’re having such a hard time.
December 7, 2007 at 6:29 pm #46262Anonymous
InactiveI went ahead and tried 3 teaspoons in 4 ounces of formula at his last feeding and guess what… he did not puke ONE TIME.. at all.. not even a spit up!!!!!!!!!!!!!!!!!!!!!! Im so excited.. and for once he seems content and satisfied as well… i hope it keeps working.. if not then i will try the prevacid again.. but for now im just gonna do the cereal and zantac and erythro… but really he may not even need the erythro now because it didnt seem to help anyways… i will keep in touch guys
December 12, 2007 at 2:29 pm #46343Anonymous
InactiveOk sooo.. sad news.. the cereal worked great for two days and then the puking came back….. so back to a doc we went… Reglan was suggested by this doctor also… this is the 3rd doc that suffested it so i decided to just give it a try.. but if i see anything weird he is coming right off of it… We started it monday evening.. and the doc acted like we should see a difference soon but today is wednesday and i see no improvement in the puking…
December 13, 2007 at 2:46 pm #46362Anonymous
InactiveI tried Reglan with my son Ben and it just didn’t seem to work for him, although I know it has helped others. We tried Motilium with my daughter Paige, and it seemed to create abdominal cramping with her, so we stopped it. Again, I know Motilium has worked well for others.
Like your son, Ben was ALWAYS hungry! He would scream to be fed every 2 hours and just couldn’t get enough. For that reason, I started him on cereal and stage 1 baby foods at about 3 months and it seemed to satisfy his hunger a little bit. Now he is 2 & 1/2 years old and we are dealing with terrible food allergies and intolerances. I am absolutely kicking myself thinking I might have made the situation worse by giving my food protein-intolerant little boy solids too early, and his immature little system started to develop allergies. Now, I know it is possible he may have developed allergies whether we fed him solids early or not, but I can’t help but beat myself up over it thinking I might have done him some harm.My suggestions (and this is just my opinion) are:1. Use Simply Thick if you want to thicken his bottles in order to help keep the food down rather than cereal at this very young age. There is an increased risk of developing food allergies when solids are introduced before 6 months of age. And unfortunately, allergies are forever. I know cereal in the bottle has helped many little ones with their reflux, but my thoughts are if you can get the same effect with a non-food product like Simply Thick, it might be a better option.2. Definately stick it out with the Elecare if he has been diagnosed MSPI. My daughter is MFPI and has been on Neocate (very similar to Elecare) since she was 3 months old. I know it’s expensive, but it is worth it in the long run to allow their gut to heal and mature without being bombarded with food proteins that it is unable to tolerate.3. If you are at the maximum recommended dose of Zantac and not seeing as much relief as you would like, try switching back to Prevacid or Zegerid at the MARCI-kids recommended dose. http://www.marci-kids.com/dosing.html You don’t see immediate relief (for us it took about 3 weeks) but PPIs are typically the best medications for effectively reducing stomach acid and alleviating the pain of reflux. Often when our little GERDlings are in less pain, they feed better and can then gain weight easier.Good luck – I hope we can all be a source of help and support!December 26, 2007 at 7:27 am #46687Anonymous
InactiveI am sorry it has been so difficult for you. I would try the cereal. Just about 2 teaspoons in the bottle. I figure it can’t have any side effect worse then the meds. I have a 7 month old that is still suffering from reflux and misc. other things she’s had 5 ear infections and now has bronchitis for 2 weeks. Her reflux is only bad at night, which doesn’t work out too good cause I have 3 yr old twins too. For the first 4-5 months, she just screamed all day and night, so I know you are about to loose it. Just hang in there and keep researching, there has to be an answer somewhere. FYI My baby is on Alimentum stopped the massive crying days greatly, and prevacid that worked for a while, but not as much now. I heard the other day that a good start formula worked for a colic baby. I bought some but haven’t tried it yet. I’ll let you know if I get brave enough. I tried soy mixed in her spoon fed cereal and she threw up for a day and a half.
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