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Forum: GER- Reflux

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  #1  
April 1st, 2011, 06:15 PM
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This is my first post in over two years of lurking! And honestly, I'm desperate for a little bit of help/guidance. Here's the story...

My son was born 5 weeks early, relatively healthy all things considered. We brought him home after a week in the hospital and he did great. About 3-4 weeks in, I started noticing classic reflux. Ped put him on Zantac which did nothing. He was regurgitating and he would wince/chew the acid as it came up. Crying started increasing. At about 6 weeks he developed a rash all over his face and I started noticing that his congestion that he had since birth was getting worse. He was, at that point, exclusively breastfed though he was given milk based formula in the nicu when he was born. I cut out all dairy, he got moderately better. Then started to get worse, so we changed him to prilosec and I cut out soy, nuts and eggs. Again, moderately better. Then worse. He now has eczema covering his face, arms and head and his congestion is worse than ever. The doc upped his prilosec dose, and is encouraging me to wean him over to Elecare. We are now doing 1 ounce of Elecare and 3 ounces of breastmilk.

He SCREAMS at every feeding. Like I am sticking a knife in his mouth. If the bottle has even one ounce of Elecare he goes ballistic. And it's turned him off feeding in general as now he won't nurse, he won't take a bottle without a huge fight. It's only been two days of the elecare and the nurse that I spoke to today said that I have to give it time and that eventually he will get used to the taste.

So my questions are this...

1. Is that true? Do I really have to torture my baby to get him to eat?
2. Are there better alternatives to Elecare?
3. Could the prilosec be giving him the rash/eczema symptoms? And would prevecid be better?

I so wish that I could breastfeed him, as I planned to for 1 year, but more than anything, I just want him to be healthy and not in pain. Any help/guidance/thoughts are much much appreciated!!

Last edited by abbymc; April 1st, 2011 at 06:19 PM.
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  #2  
April 2nd, 2011, 06:43 PM
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I know that it seems like forever, but you have to give his body a chance to experience the change. Sometimes the change from one thing to another too quickly can be more painful and upsetting to his body than the individual change. Keep your head up Mama, been there
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  #3  
April 2nd, 2011, 11:12 PM
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Hugs! I just went through the exact thing with my son. We've now been on neocate formula for 3 weeks.
You really do have to give it a full two weeks to see results. We had to go cold turkey because my son would not drink formula if he thought he could have breastmilk. It did feel like torturing him, but the results were amazing. He is a new baby now. The symptoms do get worse before they get better, so be prepared for that.
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Last edited by alicenwonderland; April 2nd, 2011 at 11:19 PM.
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  #4  
April 4th, 2011, 06:53 PM
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Thanks so much, girls. I think that patience is probably the most impossible trait to have when you are watching your baby suffer. We're on day 3 and with some added Splenda, he is now taking the formula without tears. So now I'm just waiting to see if the discomfort and chronic congestion start to subside. AIW...you are right about they symptoms getting worse. He is pretty bad right now. Fingers crossed that these two or three weeks pass quickly!
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  #5  
April 4th, 2011, 09:55 PM
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Before you get too far, did you have the blood allergy test done on your LO? If it's food allergies then a switch to special formula makes sense, if not then it won't help and then you just cut your nursing short for no reason. My little guy has no food allergies per the blood test and I argued with his pedi more than once about continuing to nurse. And with everything you eliminated from your diet did you eliminate the more common refux aggravators like fruits, citrus and gassy veggies? As for the rash, if your LO doesn't have food allergies then I would say it is the meds causing it and it's time to change that. In fact it may be time to change it anyway if he's not getting the refief he needs. Do you see a gastroenterologist or just your pedi for this?
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  #6  
April 5th, 2011, 06:41 AM
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We didn't have a blood test done, no. I'll ask our GI about it at the next appointment. Our GI basically said that symptoms of reflux often mimic symptoms of an allergy and vice versa so you treat both, which is kind of what we are doing. I am actually pumping with the hopes that I can get the toxins out of my system and go back to breastfeeding in a couple of weeks. I am on TED right now, so my milk will be clean when/if we start back.

I am having SUCH a hard time getting the prilosec down. He dribbles it all out or he spits up so there is no way that he is getting his adequate dosage either. That could be part of the problem.

His congestion is SO bad. Worse than ever. We took him to an ENT who did a scope and said that the upper esophagus looked a bit swollen but other than that, he didn't see any major issues.

I'm pretty much at a loss with all of this. My hope is that worst case, we can relieve some of the symptoms and that he will eventually outgrow it. I don't know what else to do at this point.
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  #7  
April 5th, 2011, 01:37 PM
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Quote:
Originally Posted by kruff79 View Post
Before you get too far, did you have the blood allergy test done on your LO? If it's food allergies then a switch to special formula makes sense, if not then it won't help and then you just cut your nursing short for no reason. My little guy has no food allergies per the blood test and I argued with his pedi more than once about continuing to nurse.
I'm sorry but this just isn't true. Protein sensitivity has horrible side effects including bloody stools and rash. It does not always test positive for allergies, but it can also blow positive for everything. Some can continue with an elimination diet, but not every baby. Neocate was invented for protein intolerance as well as allergy. My baby is one of those babies. Even TED didn't help. he developed sensitivities to those proteins too. It got us a few more months of bfing... but at such a cost. Now he wont be able to start solids till after 10 months.
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Last edited by alicenwonderland; April 5th, 2011 at 01:55 PM.
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  #8  
April 5th, 2011, 05:32 PM
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Wow, that is so interesting aliceinwonderland. I am doing TED now to prepare my body and milk just in case I can go back to breastfeeding. But honestly, with a toddler in tow as well, it's pretty tough. I'm going to see what the doc says on Thursday. He did better today but is only taking 3 ounces at a time so that's a bit frustrating. And he does still cry at the bottle, mostly towards the end when the hunger pains aren't there and he realizes that it tastes pretty nasty.

Thanks for all of the advice, if you guys have any more, I'd be grateful. I'll keep you posted!
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  #9  
April 5th, 2011, 07:05 PM
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yeah... we're a few weeks in and teddy still only takes a few ounces at a time.... could be a breastfeeding habit though. I hope you are able to go back to breastfeeding!
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  #10  
April 5th, 2011, 07:39 PM
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btw, teddy is my FAVORITE name. Mine is William after my dad, but we call him teddy (as in teddy bear) because it's just such a great name.
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  #11  
April 6th, 2011, 06:52 AM
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  #12  
April 7th, 2011, 12:14 PM
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Quote:
Originally Posted by alicenwonderland View Post
I'm sorry but this just isn't true. Protein sensitivity has horrible side effects including bloody stools and rash. It does not always test positive for allergies, but it can also blow positive for everything. Some can continue with an elimination diet, but not every baby. Neocate was invented for protein intolerance as well as allergy. My baby is one of those babies. Even TED didn't help. he developed sensitivities to those proteins too. It got us a few more months of bfing... but at such a cost. Now he wont be able to start solids till after 10 months.
Do they class the protein sensitivity as the same as a food allergy? I thought it was more of a metobolic problem, so I'd like to know if they do. And there are definately cases (like yours) where a switch to a special formula is the last and best thing to do. It just feels like too many babies get switched and don't get the reflux relief that they need.
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  #13  
April 8th, 2011, 11:17 AM
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My DD has some of those same problems as a baby. Her Ped GI stopped breastfeeding and put her on Nutramigen and Prevacid for the bad acid-reflux. After about 2 weeks things started to even out. We did not find out about a lot of her allergies until she was 18 months old - did not show up on any test. Things like apples, bananas, oats, berries, etc. Milk, soy, & egg did. My heart goes out to you - I know how incredibly hard it is to deal with allergies and reflux. Stopping the breastfeeding really helped unfortunately - I really wanted to do it b/c I thought it was best, but it wasn't.
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  #14  
April 8th, 2011, 02:57 PM
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That is actually really comforting. To know that the formula helped. I have decided to really commit to the Elecare. I am still pumping but am okay with the fact that my milk might not ever be good for him. Fingers crossed that this is all worth it. I just want my sweet little baby to be happy like all of the others that I see.
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  #15  
April 8th, 2011, 03:06 PM
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Protein sensitivity is caused by a immature GI tract. The body gets sensitized, and the intestine bleeds, leaving open areas for other proteins to get in and sensitize the body. The reaction is just like an allergy. The immune system tries to fight the protein. It can go away with age, as the intestine gets more mature. However, if it is not allowed to completely heal (like with my son) more and more proteins sensitize the body, and the body doesn't have a chance to outgrow the problem. Neocate is completely broken down, giving my son's bowel COMPLETE rest. I kept breastfeeding and eliminating till he became sensitised to just about everything
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  #16  
April 8th, 2011, 09:55 PM
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Quote:
Originally Posted by alicenwonderland View Post
Protein sensitivity is caused by a immature GI tract. The body gets sensitized, and the intestine bleeds, leaving open areas for other proteins to get in and sensitize the body. The reaction is just like an allergy. The immune system tries to fight the protein. It can go away with age, as the intestine gets more mature. However, if it is not allowed to completely heal (like with my son) more and more proteins sensitize the body, and the body doesn't have a chance to outgrow the problem. Neocate is completely broken down, giving my son's bowel COMPLETE rest. I kept breastfeeding and eliminating till he became sensitised to just about everything
Ahhhhh! Thank you, I like learning something new. Now how about another question. If a mom was able to keep a decent milk supply by pumping would the intestines heal in any kind of decent amount of time to try nursing again, or are you looking at months of recovery time?
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  #17  
April 9th, 2011, 03:43 AM
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I was told complete healing would take 3 months. Symptoms have mostly resolved or drastically improved in 3 weeks though. I couldn't sustain the elimination diet that long. The weight loss dried up my milk. And to be honest, it is sooooo much easier this way.
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  #18  
April 9th, 2011, 09:34 AM
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Okay, so possible but probably not plausible would be a good answer then?
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  #19  
April 9th, 2011, 12:35 PM
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I think if its caught early on it might work out... like if the mom went immediately to a full elimination diet. I just elinated one protein at a time... it worked temporarily... but not any more. I do know plenty of mamas that were able to give up their problem protein, and continue to breastfeed, and never needed formula. ( though all of these women ended up with supply issues) It's really a case to case basis. I think once you get beyond the basic milk and soy sesitivity, you start to get into trouble.
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  #20  
April 12th, 2011, 06:33 AM
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Thought I'd post a thank you and an update. Thank you so much for encouraging me to stick with the formula. AIW, you were right. I needed to give it more time. On Saturday, after about 1 week on the formula, he woke up a new baby. I have heard other mothers say this and I seriously thought I would never see the day. But, he is happy and laughing (first time) and seems so much more comfortable. We also did one night of prescription hydrocortizone on his eczema and it was literally GONE the following day. I don't really think it was the lotion, but rather everything finally working in tandem. I'm still nervous that he will take a turn, but for now, I'm just enjoying my sweet, happy baby. Fingers crossed.
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