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I don't have a lot of time (time for bed for Ilana), but I've had 2 kids now on elemental formula. Evan reacted to vanilla Elecare and Ilana reacted to plain Elecare (after 8 mos using it) and is on Neocate Jr now. Another thing to consider is the concentration. Evan couldn't handle 30cal/oz till he was 22-23#. Before that he'd puke before he even finished his bottle. I know a few kids that can't even handle 20cal/oz and need to have 15 or so instead. Not normal, but absolutely needed for those kids. Something to think about and possibly why the rice milk went well, it's not as calorie dense. AJ was almost 25# at 1 when we learned about his problems and he went to rice milk, he was dairy, soy, and egg free and thrived on rice milk and his diet. Evan is only 27# now at 3.5yo so would've done quite the opposite had we moved him to rice milk at 1, especially since all he could have at 1 (after I weaned) was Neocate and white rice. He was on that till 15 mos and did super. I made the decision to wean b/c I was down to 4 foods and it was just one more thing in his diet that could bother him. He did SOOOO well on the formula and rice only and was on the formula till he turned 2, but I wish I would've kept him on it since he's gained a whopping 2.5# in the last 19 mos.
 

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Discussion Starter · #23 ·
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<div>Originally Posted by <strong>ellasmama2007</strong> <a href="/community/forum/post/11603505"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">sorry, i shoulda asked you over here about the bottles by mouth and if he has improved with solids...</div>
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no prob!<br><br>
We actually didn't have to take him home with the NG, though that was the original plan. At the last minute, the neo said, 'let's take it out and see if he gets hungry enough to take a bottle.' He dropped a bit of weight at first (and I hated having to do it that way), but he did, in fact, start feeding orally six hours before we were scheduled to take him home.<br><br>
we started him back on known safe purees this week, along with the Alimentum. pears and sweet potatoes (one at a time). He is still only eating about 3-5 ounces of purees per day. I am going to make baked sweet potato fries tonight to see if those get more traction. He was eating solids fairly well between months six and seven, then started tapering off- he was reducing his EBM intake before he started refusing solids, though, if I recall. We have his milk food challenge next week at the hospital, and they will have a nutritionist try to develop a feeding plan with me that day. We also meet with a team at the feeding clinic the following week to see if maybe he's developed texture aversions.<br><br>
Also, the allergist and I have been in contact via email this week, and she thinks we'll have to stop the Alimentum, based on the skin and GI symptoms (thanks for that allergy march info, Chinese Pistache, although it depressed me!). She mentioned trying a maltodextrin-based formula next, so I'm guessing she wants to do EO28. Based on the severity of his reaction to the Elecare, that makes me nervous. I'd rather have to custom blend something based on rice milk.<br><br>
Ah well. Something has to change, as he is screaming his head off at the tiniest insults because he isn't sleeping anymore. I know how he feels. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll">
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">'d rather have to custom blend something based on rice milk.<br><br>
Ah well. Something has to change, as he is screaming his head off at the tiniest insults because he isn't sleeping anymore. I know how he feels.</td>
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i'd be leaning toward the custom myself. i'm sure it is uber pricey, but the neocate that we bought ( we barely used any out o 1 can) was $150 for 4 cans. that prolly isnt much cheaper. could you just puree avocado into fort rice milk for now and nix the alimentum?<br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> hang in there. If he is anything like ella, she is the sweetest easiest baby doll when she feels ok, when she doesnt...everything changes. it is like night and day! I used to just strap her on and wear her all day every day just to help her stop crying. i still do that sometimes.
 

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<div>Originally Posted by <strong>preemiemamarach</strong> <a href="/community/forum/post/11606384"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">no prob!<br><br><br><br>
Also, the allergist and I have been in contact via email this week, and she thinks we'll have to stop the Alimentum, based on the skin and GI symptoms (thanks for that allergy march info, Chinese Pistache, although it depressed me!). She mentioned trying a maltodextrin-based formula next, so I'm guessing she wants to do EO28. Based on the severity of his reaction to the Elecare, that makes me nervous. I'd rather have to custom blend something based on rice milk.<br><br>
Ah well. Something has to change, as he is screaming his head off at the tiniest insults because he isn't sleeping anymore. I know how he feels. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll"></div>
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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm sorry <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I hope the new formula works out.
 

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<div>Originally Posted by <strong>ellasmama2007</strong> <a href="/community/forum/post/11606498"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">i'd be leaning toward the custom myself. i'm sure it is uber pricey, but the neocate that we bought ( we barely used any out o 1 can) was $150 for 4 cans. that prolly isnt much cheaper. could you just puree avocado into fort rice milk for now and nix the alimentum?<br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> hang in there. If he is anything like ella, she is the sweetest easiest baby doll when she feels ok, when she doesnt...everything changes. it is like night and day! I used to just strap her on and wear her all day every day just to help her stop crying. i still do that sometimes.</div>
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yikes! You can get Neocate for $10-13 a can on ebay<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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<div>Originally Posted by <strong>Satori</strong> <a href="/community/forum/post/11608083"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">yikes! You can get Neocate for $10-13 a can on ebay<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"></div>
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There was a guy here just arrested for taking orders on ebay for Neocate and not fulfulling them. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> First see if you qualify for WIC and then check your insurance, under both pharmacy and durable medical equipment.
 

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Discussion Starter · #28 ·
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<div>Originally Posted by <strong>thepeach80</strong> <a href="/community/forum/post/11617255"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">There was a guy here just arrested for taking orders on ebay for Neocate and not fulfulling them. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> First see if you qualify for WIC and then check your insurance, under both pharmacy and durable medical equipment.</div>
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The irony in all of this is that now, DS probably *would* qualify for some sort of formula to be covered on our insurance, since he has a documented allergy to 3 specific things (egg, corn, milk). Before when we tried, our insurance rejected covering Elecare, since he was on an elimination diet to rule out allergies. were he tolerating Alimentum better, I would pursue having it covered, but his diarrhea and eczema are getting bad enough now that there's no point. We had him in an office yesterday with really bright lights (closed on our new house, yay! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up">), and I saw just how terrible his skin looks. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> It's nowhere near the severe eczema I've seen in some food allergic kids, but it's definitely an issue, and the worst he's ever had it.<br><br>
I seriously doubt any insurance would cover all the ingredients for custom-blended formula. I am going to try again to get him on WIC or supplemental medicaid for being medically fragile.
 

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<div>Originally Posted by <strong>Chinese Pistache</strong> <a href="/community/forum/post/11589837"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Google "allergy march." Many allergies begin with eczema, then progress to asthma if not addressed.</div>
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Thank you for this info. If only we could get our MD's to read online...maybe they'd stop acting like it's no big deal and advising us to just feed different foods without watching for rxns. (Yes, real Dr., real advice).<br><br>
To OPoster, I haven't seen too much in the way of hugs in your responses so far. Let me offer one...<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> This sounds like a really trying first year for both you and your LO. It is really difficult for there to be something wrong, and for you as momma to be unable to fix it. I hope you have asked all the supportive people in your life to tell you often what a good job you are doing. This is dreadful hard, and some days are downright unbearable. I look into my LO's little face whenever I lose heart...it helps. You have my support.
 

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I don't think I have a lot of time right now to say everything that crossed my mind while reading your posts, but a couple things really stuck out to me. Your son sounds a lot like mine when he was an infant. He was severely FTT (just over 12 pounds at 12 months) and they tried several different elemental formulas. He reacted with projectile vomiting to Elecare, and severe eczema to Neocate 1+, I think b/c of the corn syrup. Alimentum contains corn syrup also, and the proteins are still intact, not nearly as broken down as they would be in an elemental formula. We were told by the LC while he was hospitalized that, if I couldn't get my milk supply up significantly, that they could take whatever foods we knew that he could tolerate and make a formula.<br><br>
WARNING--Rice Dream is the WORST rice milk on the market for allergies. No matter what the label says, IT CONTAINS GLUTEN. The amount of barley is small enough to slip under the legal regs, but any amount is too much for a child with an allergy or with celiac. My son reacted. The processing is also highly questionable. Almost any other rice milk is safer.<br><br>
I've got to run, but wanted to get that out there asap.
 

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<div>Originally Posted by <strong>Missy</strong> <a href="/community/forum/post/11626876"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">WARNING--Rice Dream is the WORST rice milk on the market for allergies. No matter what the label says, IT CONTAINS GLUTEN. The amount of barley is small enough to slip under the legal regs, but any amount is too much for a child with an allergy or with celiac. My son reacted. The processing is also highly questionable. Almost any other rice milk is safer.<br><br>
I've got to run, but wanted to get that out there asap.</div>
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yep, they changed there detection method to only check for 20ppm which is the legal limit. Its still processed with 0.2% barley but they don't have to list it as its not an actual ingredient but rather used in the processing. If you can and ask point blank "is it processed with barley?" they will say yes (I called and they tried just saying "its legally gluten free" I asked point blank and they admitted its still made with barley) and was the source of my celiac daughters reactions.
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Missy</strong> <a href="/community/forum/post/11626876"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">WARNING--Rice Dream is the WORST rice milk on the market for allergies. No matter what the label says, IT CONTAINS GLUTEN. The amount of barley is small enough to slip under the legal regs, but any amount is too much for a child with an allergy or with celiac. My son reacted. The processing is also highly questionable. Almost any other rice milk is safer.</div>
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<div>Originally Posted by <strong>Satori</strong> <a href="/community/forum/post/11628007"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">yep, they changed there detection method to only check for 20ppm which is the legal limit. Its still processed with 0.2% barley but they don't have to list it as its not an actual ingredient but rather used in the processing. If you can and ask point blank "is it processed with barley?" they will say yes (I called and they tried just saying "its legally gluten free" I asked point blank and they admitted its still made with barley) and was the source of my celiac daughters reactions.</div>
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Are you sh*tting me?!? No wonder we've never been able to get DD to baseline... although I haven't been drinking it the past week or two, and she's looking a lot better! That is so infuriating.
 

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<div>Originally Posted by <strong>changingseasons</strong> <a href="/community/forum/post/11628199"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Are you sh*tting me?!? No wonder we've never been able to get DD to baseline... although I haven't been drinking it the past week or two, and she's looking a lot better! That is so infuriating.</div>
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No, no kdding here. I was petty PO'd when I found out. Check out there FAQ<br><br><a href="http://www.tastethedream.com/info/qa_ricedream.php#faqid474" target="_blank">http://www.tastethedream.com/info/qa...m.php#faqid474</a><br><br>
Is Rice Dream Beverage a gluten free product?<br><br>
Yes. Although Rice Dream Beverage is processed using a barley enzyme, the barley enzyme is discarded after use. The final beverage might contain a minute residual amount (less than .002%) of barley protein.<br><br><br><br>
ummm, then its not GF ya morons! To me GF means 0.00000% gluten! I don't care what the legal limit is.
 

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Hi ladies,
I know it's long time. My 5 months baby also allergic to all formulas even elemental ones. He is doing great on breastmilk with elimination diet. But my breastmilk is decreasing whatever I do. It is about to come to end. I don't know how to feed my baby, how did you handle all of these things? Are they all over for you?
 

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Hi ladies,
I know it's long time. My 5 months baby also allergic to all formulas even elemental ones. He is doing great on breastmilk with elimination diet. But my breastmilk is decreasing whatever I do. It is about to come to end. I don't know how to feed my baby, how did you handle all of these things? Are they all over for you?
You should start your own thread so everyone knows it is a new problem. Include information like what foods you have had to eliminate and what you have tried to maintain or increase your supply.

Frequent feedings, snacks and water for mom while nursing can increase supply, and worked for me far better than pumping.

Keep on keeping on.
 
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