infant allergy to elemental formula- corn syrup solids? - Mothering Forums

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#1 of 35 Old 06-27-2008, 05:07 PM - Thread Starter
 
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Hi everyone!

This is my first time posting in the allergies forum, so be gentle, please.

My son (who will turn one in 2 weeks) has had a host of medical issues, most involving recurrent infections, developmental delays, and now FTT. He has gained a net of 13 oz in over 4 months, when he was in the 50th percentile for weight until 6 months. He was EBF (well, he got EBM, I EP for him as he had feeding issues and never learned to nurse) until around 5 months when we were forced to give him small amounts of pureed fruits to keep his medications down. EPing is tough to keep up, and my supply started tanking around six months, so we had to supplement with 1 bottle of formula a day. He'd shown a reaction to milk based formula in the NICU (rash around mouth and anus), so we tried Nutramigen, which caused the same issue. So we moved to Similac Soy, which he was ok with. He was getting maybe 4-5 oz of formula per day, the rest EBM. At around 6.5 months, he was eating low-allergen purees as well, and avocado (which he loved). His total EBM/formula intake was around 32-34 oz per day. By 8 months, he'd started refusing all solids, and was down to 16-17 oz EBM a day. He was evaluated by EI for motor delays, and they referred us to several specialists- ENT, GI, local immunology (he'd been tentatively dx'd with a primary immune deficiency back in VA before we moved).

He also was vomiting up to 12 times per day and had days of diarrhea (4-5 liquid/mucus stools per day) most days of the week. The GI tested for everything, then started him on Elecare and asked me to do an ED if I wanted to continue doing EBM. I did, and none of the sx resolved, although after about six weeks, he stopped vomiting as much and the diarrhea improved. Since we had no info on the causes of everything and he was still only taking 23-24 oz Elecare per day, we had him scoped and biopsied for EE, EG, and celiac. He is currently being evaluated for EG, since his colon definitely had some eosinophils, but EE and celiac were ruled out.

The GI prescribed Periactin to increase his appetite, and asked that we increase the concentration of elecare up to 30 cal/oz (it had been 20 cal/oz before). We'd tried that once before and he ended up with ulcerations on his foreskin. Nobody could agree that Elecare was the cause, but the issue resolved when we dropped it back down.

We decided to slowly up the concentration, going up to around 24 cal/oz. The Periactin was started, and he chowed down, taking in 35-40 oz per day. 48 hours afterward, he started screaming his head off- I checked his diaper and he'd had a liquid BM that left burns over his entire bottom, scrotum, penis and pubic area. They even blistered. The reaction continued to spread after I cleaned him and took his diaper off, so we went to the ER to rule out a dangerous allergic reaction to the med (which wouldn't make sense as it's an antihistamine, but still). ER doc said it looked like he had been dipped in acid.

We were sent home and talked to his GI and allergist, both of whom suspected an allergy to the corn syrup solids *or* the soy oil in the Elecare. He'd also had several bottles of Neocate Jr. after the reaction, and the diarrhea and screaming continued (NJ doesn't have soy oil).

He was placed on a 48 hour diet of Rice Dream to help his gut recover. He instantly looked and acted better, and the rash cleared most of the way up. We're now doing a trial of Alimentum to see if he can tolerate it- so far, he's getting quite a bit of eczema but seems to be in a relatively good mood, and no GI issues.

So- after all that explanation (sorry so long!), I was wondering if anyone else had seen this kind of reaction to elemental formula and/or corn syrup solids? The fact that he was doing poorly on the Neocate Jr makes me think it's not soy oil. Our problem is that we literally have nothing to feed him if the Alimentum doesn't work. GI said to find a rice-based elemental formula, but I haven't seen one in my searches.

Any thoughts, opinions and suggestions would be most welcome!
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#2 of 35 Old 06-27-2008, 06:45 PM
 
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You poor thing. That's a lot to go through for you and your little guy.

I know that a small percentage of people do react to elemental formulas. Even a poster here, changing seasons, is trying it and her child reacted.

Since your lo is nearly one, can you just cut the formula altogether and go to solids along with whatever bm you can pump? If he tolerates some foods (avocado and such), is there any objection to his getting his calories from food sources?

My dd is allergic to corn, dairy and soy, so I know how hard it is to find safe foods. I would think that going to thin meat purees, eating lots of good fat, getting fruits and vegetables, would be preferable.
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#3 of 35 Old 06-27-2008, 08:55 PM - Thread Starter
 
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You poor thing. That's a lot to go through for you and your little guy.

I know that a small percentage of people do react to elemental formulas. Even a poster here, changing seasons, is trying it and her child reacted.

Since your lo is nearly one, can you just cut the formula altogether and go to solids along with whatever bm you can pump? If he tolerates some foods (avocado and such), is there any objection to his getting his calories from food sources?

My dd is allergic to corn, dairy and soy, so I know how hard it is to find safe foods. I would think that going to thin meat purees, eating lots of good fat, getting fruits and vegetables, would be preferable.
Thanks for responding! Our big fear right now is that he has a multiple food protein intolerance, so the docs are concerned that he won't be able to tolerate my BM (and perhaps that was responsible for at least part of his issues). Since he's been diagnosed with a severe egg white allergy (we ended up with an Epi Pen Jr for it), and I eat eggs daily, the allergist is hypothesizing that he's become sensitized to much of what I eat. I can certainly try going back on an ED again, but right now I'm only getting 6-8 oz per day pumping.

The calories he requires are rather overwhelming when I try to come up with what he could eat- the gastro wants him getting at least 870 per day, his physical therapist said she would expect that number to be a lot higher. At 20 cal per oz, he only gets about 450 calories from the different formulas we've been on (at levels he tolerates, that is). We are scheduled for a milk food challenge in 2 weeks, so that would open up a whole world of calorie-intensive possibilities.

Getting away from ridiculously expensive elemental formula and on to real food is certainly my first choice, if we can find a way, though!
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#4 of 35 Old 06-27-2008, 09:07 PM
 
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So- after all that explanation (sorry so long!), I was wondering if anyone else had seen this kind of reaction to elemental formula and/or corn syrup solids? The fact that he was doing poorly on the Neocate Jr makes me think it's not soy oil. Our problem is that we literally have nothing to feed him if the Alimentum doesn't work. GI said to find a rice-based elemental formula, but I haven't seen one in my searches.
hi mama, i really feel for you. You have a real challenge on your hands and it sounds like you are doing everything you can! my lo tried the infant neocate really briefly ( over the course of a few days) when I had my period and was frantically pumping and trying to get my milk back. she wouldnt take it at all and then i put tiny amounts of pureed banana ( she loves bananas) in it to make it taste better and she was puking and miserable from just 1/2 ounce a couple times. it was pretty awful but she never had a rash like that.
I know that when you increase the cal/ounce like that, sensitive babies can really react badly to it ( sometimes their guts cant handle it and they can become seriously ill). I dont want to sound alarming, i just have a lot of experience with that.
I really tend to agree with chinese pistache. if you could work in enough beneficial foods (avocados, sweet pots, white pots, spinach, evoo, flax seed oil, coconut milk/oil, hemp seed oil, etc), maybe you could just puree them and add them to the enriched rice dream that he tolerates? ( could you give him polyvisol with iron to up the nutritional value of the rice dream? i havent examined the ingredients of that, it very well may have corn or dairy) also, the bone broths or small amounts of meats if he would take them.
is he still refusing solids? if so, maybe anything you could puree thinly enough to get in a bottle with a bigger hole could help. maybe he would like the saltiness of a bone broth. Definitely stay away from the top 8 allergens (imo) plus the corn. although, you said he did ok with the isomil in the beginning... have you tried that at all again. soy could get him some good proteins if he tolerates them ( although i would be really careful with soy - its a catch 22).
I dont know what else to suggest, but i really hope something helps. I just would really feel inclined to stay away from the concentrated formula and stay with whatever doesnt cause him more injury, kwim? I really hth and best wishes to you!
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#5 of 35 Old 06-27-2008, 11:00 PM
 
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Yep- I just started on Vivonex, which is an adult complete elemental... and DD reacted through my BM. We are going to try the Neocate E028 Splash next, I'm crossing my fingers that she won't react.

I read your post really quick because DD is getting grumpy... did you say whether they have done allergy tests or not? Have you tried any alternative testing for food intolerances- like ELISA or ALCAT? They certainly are not 100% accurate, but they did give us a good starting point for a diet. Before starting the Vivonex, I was doing a rotation diet, which was really helping DD's symptoms. I would highly suggest a rotation diet so that your LO doesn't continue becoming sensitized to more and more foods. Also look into gut healing for him and you- things like bone broth, probiotics, digestive enzymes (although I'm a little leery of them right now... I recently became sensitized to mine and started reacting to them).

Don't have time to type much now, but if the search function ever comes back... you can look through some of my threads and see what we've been doing. I have some threads on our rotation diet, on the ELISA testing, etc.



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#6 of 35 Old 06-27-2008, 11:26 PM
 
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Originally Posted by preemiemamarach View Post
Thanks for responding! Our big fear right now is that he has a multiple food protein intolerance, so the docs are concerned that he won't be able to tolerate my BM (and perhaps that was responsible for at least part of his issues). Since he's been diagnosed with a severe egg white allergy (we ended up with an Epi Pen Jr for it), and I eat eggs daily, the allergist is hypothesizing that he's become sensitized to much of what I eat. I can certainly try going back on an ED again, but right now I'm only getting 6-8 oz per day pumping.

The calories he requires are rather overwhelming when I try to come up with what he could eat- the gastro wants him getting at least 870 per day, his physical therapist said she would expect that number to be a lot higher. At 20 cal per oz, he only gets about 450 calories from the different formulas we've been on (at levels he tolerates, that is). We are scheduled for a milk food challenge in 2 weeks, so that would open up a whole world of calorie-intensive possibilities.

Getting away from ridiculously expensive elemental formula and on to real food is certainly my first choice, if we can find a way, though!
So, are you saying that you're still eating things he's allergic to? Because most of us here have children who react to the proteins in our milk and we've had to eliminate those foods from our own diets. Are you familiar with "leaky gut" and "gut healing"? If not, I'm happy to give you a run-down and how it relates to allergies and breastfeeding.

There are very few instances of breastmilk actually being the problem, and usually, that involves a metabolic disorder. I've never heard of a human baby's allergy to its own mother's milk (though, unfortunately, I've heard of doctors suggesting it). However, it is very likely that proteins from foods you eat are affecting your lo. As I said, most all of us are going through or have been through the same scenario.

I don't think it would be hard to get your ds to consume that many calories. If formula/bm provides half, then, you could get the other half (or more) through whole foods with a GOOD dose of fat. I just found this: http://www.dietbites.com/CalorieIndexFats.html Many of these fats would not be appropriate for an atopic child (like the nut oils), but the others have lots of calories packed into small servings. If you fried little bits of finger food for your ds in lots of oil (like meat and veggie balls) or pureed fruits and vegetables and mixed the purees with oil, you could get 500 or 600 calories into him in 3-5 little meals or snacks.
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#7 of 35 Old 06-28-2008, 12:51 AM
 
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GI said to find a rice-based elemental formula, but I haven't seen one in my searches.

Any thoughts, opinions and suggestions would be most welcome!

Is is no rice based elemental formula How's his IgA? If its pretty low or absent that would account for the reactions. Has his tryptase level been checked? If its high is will also cause all kinds of ugly allergic reactions to tons of foods. How low is his IgG? Antibody response? Have they started talking about IVIG/SCIG yet? We had all the issues your talking about and they slowly improved over time but we didn't see any real growth until we started IVIG and then she gained like 10 lbs in 6 months after 2 years of no growth.

fwiw, my dd finally ended up tolerating Elecare Vanilla and Pediatric EO28 which comes in the juice boxes. I've heard of kids with severe corn allergies tolerating Vivonex Pediatric pretty well but its rarely tried. My dd tolerated it, we just couldn't get her to drink it.

Seriously?
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#8 of 35 Old 06-28-2008, 01:09 AM - Thread Starter
 
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sorry- i was totally not clear. i have been dairy and soy free since he was 2 weeks old, and cut the eggs back out of my diet when he had allergy testing (skin prick, he had RAST testing done during his surgery) and he came up positive for egg white. right now, i am freezing what i pump, in the hope that we can use that milk again, but since his weight has been dropping again, i was concerned about continuing to give him ebm if there is possibly a protein in it from what i eat that gives him issues. i am also having some cardiac issues of my own, so i am a little worried about radically altering my diet too much. anyway, i am avoiding nuts, eggs, dairy and soy.

i would love to learn more about leaky gut and breastfeeding. i understand the concept, and i'm certain the fact that my mother gave me powdered skim milk (!) as an infant caused me a host of issues. (this was the recommended alternative to whole cow's milk, which is what my sibs were given- i had terrible rashes and diarrhea on whole milk, apparently).

i will definitely check that link- the trick will be getting him to eat. we have an appointment for a feeding clinic evaluation in 2 weeks. today, he's had 26 ounces of alimentum, and about two tablespoons of sweet potato puree. he simply will not eat more. he definitely enjoys chunks of food, but they pass straight through him- even tiny diced pieces. he does not chew, though he has 9 teeth and 3 coming in. our gastro recommended purees so that he can actually get some nutrients. i plan to re-introduce avocado tomorrow, as it's his favorite...he could definitely eat a whole one per day.

can't remember who mentioned rotation diets (typing on my phone so i can't check)- do you mean for me, or for ds? i definitely will read some old threads to get an idea of how this works.

i should also mention that his IgE has been trending up- it was 8 at 5 months; 13 at 8 months; and 23 at 11 months. his only environmental allergy we've gotten a positive test on is dust mites, but they can't live in this area.

oh, his RAST for corn was negative, but we haven't had a skin prick for corn yet. soy was negative on both, i think. but our gastro thinks at least some of his issues are IgG mediated, so the standard tests won't identify them. would the other tests mentioned be helpful in this regard?

we are also going to be pretty careful with grains; he does have a positive celiac gene, and celiac and immune deficiencies often are comorbid.

hope that made sense- it's late and i'm mutlitasking!
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#9 of 35 Old 06-28-2008, 01:13 AM
 
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we are also going to be pretty careful with grains; he does have a positive celiac gene, and celiac and immune deficiencies often are comorbid.

hope that made sense- it's late and i'm mutlitasking!
Sound like both you and him need to go gluten free if he has the gene and is FTT.

Seriously?
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#10 of 35 Old 06-28-2008, 01:49 AM - Thread Starter
 
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satori, his IgA was 12 at last count- new labs coming soon. IgG is 260, down from the 350's at 8 months. we haven't had his tryptase checked- i will look into it. just had IgG subclass drawn two days ago. our immunologist is a UAV who believes bf has no immunological benefit, and that ds has only selective IgA deficiency, at worst, though we have always suspected otherwise (we haven't seen him in 4 months, and ds was much higher on the growth charts then, and was eating). new allergist (at the same hospital) now suspects a t cell disorder with the new, lower IgG levels (his lymph count is low as well). he's also been anemic since six months, which is always written off to prematurity.

we have wanted to try ivig for four months, but his labs weren't 'bad' enough then. immunologist blamed gi issues; gi now believes the root is allergy/immune. meanwhile, my kid won't eat or grow and keeps falling further behind in development.

do you mind sharing what immune disorder your dd was dx'd with? our immunologist insists gi involvement in primary immune disorders is rare in kids, but it makes perfect sense, based on his symptoms.
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The rotation diet would be for him, and also for you if you're BFing. The idea is that by not eating the same things every day, you avoid your body getting overloaded (and then sensitized) to new foods. Also, it's a lot easier to track a reaction that is occurring every 4 days- you just have to see what you ate that day and narrow it down.

So for my rotation, I rotate (one per day) four meats (chicken, turkey, lamb, pork), four grains (rice, millet, quinoa, buckwheat), four oils (EVOO, canola, safflower, coconut), four veggies, etc etc... We have so few foods left that are safe to eat, I have about 1 in each food group per day.

The ELISA test is for IgG, and I'm not sure about the ALCAT. I did an ELISA that tested combined IgE and IgG (Meridian Valley Labs), and DD had one that tested IgG and Immune Complex (Sage Labs).


Question for you and Satori- are you talking about measuring IgA and IgG in relation to a food, or just by itself, or what?? I have yet to find a doctor that has ANY knowledge of food intolerances, so I've done a lot of research myself (with the help of the mamas here on MDC). But I would be interested to learn more. How did you find a doc to help you? Are you both seeing an immunologist? Is that the type of specialist that I should be looking for?

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#12 of 35 Old 06-28-2008, 05:19 PM - Thread Starter
 
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Question for you and Satori- are you talking about measuring IgA and IgG in relation to a food, or just by itself, or what?? I have yet to find a doctor that has ANY knowledge of food intolerances, so I've done a lot of research myself (with the help of the mamas here on MDC). But I would be interested to learn more. How did you find a doc to help you? Are you both seeing an immunologist? Is that the type of specialist that I should be looking for?
We started seeing an immunologist when DS was 5 months old and had been treated 6 times for ear infections that simply would not respond to antibiotics (basically, he got sick at 10 or 11 weeks and stayed sick until we moved to Colorado in February and I pulled him out of daycare). The typical immunology screening they do first, if you have a kid with excessively frequent (or excessively serious) infections is GAME: IgG, IgA, IgM, and IgE. They are total levels, not specific to pathogens, at this point. For us, the first screen showed low IgA and IgG, moderately high IgE, and high IgM. One immunologist said this was a probable primary immune deficiency, but the next doc said he thought it might be transient, given DS's age at the time and his prematurity. Now, since his levels ought to be improving, but they aren't, we're being pointed back to the immunology route.

We actually weren't considering food allergies until we saw the gastro at 8-9 months; we knew he had a milk intolerance early on, but never suspected anything else was going on. (We also had the full GI imaging workup done to rule out malformations of the digestive organs.

Allergy and immunology are often tackled at the same specialty hospital (we go to National Jewish in Denver)- I haven't had a chance to read your old posts to see what's been going on with you and your DD, but a really good resource for the basics on immunology is www.primaryimmune.org.
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#13 of 35 Old 06-28-2008, 10:40 PM
 
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Question for you and Satori- are you talking about measuring IgA and IgG in relation to a food, or just by itself, or what?? I have yet to find a doctor that has ANY knowledge of food intolerances, so I've done a lot of research myself (with the help of the mamas here on MDC). But I would be interested to learn more. How did you find a doc to help you? Are you both seeing an immunologist? Is that the type of specialist that I should be looking for?

I'm talking by themselves, Low IgA will cause you to test negative on the celiac antibody panel no matter what. Having low IgA will also cause massive food allergies, no idea why but its what I have been by several Dr's. We found our current Dr on accident, our insurance shipped us to UCLA becasue my dd had so many issues at the time (she was only 2, maybe 3 yrs old) and they assigned us to a good Dr. He's a well known researcher. He happens to do research for systemic mastocytosis which is an incredibly rare condition and its one of those needle in a haystack conditions but when you have a kid that can have an anaphylactic reaction on first exposure to something its a big red flag and he happened to know about the condition and no one else did. She also had one serious illness after another and was cycling with bacterial pneumonia every 3 weeks on top of everything else so they knew something was going on with her immune system. We didn't get all our answers from the Dr and after a couple of years we ran into insurance issues and they sent us to another Dr who was an allergist/immuno who was amazing, he literally read everything single thing written on dd and every last lab ever ran from birth to age 5 BEFORE our 1st appt and he had thoughts on where to go and he was right. My dd has hypogammaglubinanemia w/ specific antibody deficiency (also known as CVID). I was terrified to start IVIG and getting opinions here didn't help matters but its been 2 years and its the best dam thing ever. Now she hardly ever gets sick and she does better then any of us when were all sick. The baby has the same condition and was given formal dx at which point they shipped her to UCLA for insurance reasons and now there running there own tests and were back to wait and see. I'm guessing it will be 6-12 months before we start IVIG/SCIG on her but if it hits the fan this winter I will be pushing to start now becasue of her metabolic issue. Anyway Dr's don't tend to give a ratts butt about intolerances and your usually left to your own in finding them. My oldest has a serious intolerance to artificial stuff that causes very serious behavioral issues (as in get a dart gun and straight jacket) but Dr's don't consider it a problem because its not a "true" allergic reaction that they can treat. They just wanted to throw strong antipsychotics at her rather then find the source of the issue. Thank god I looked! A simple intolerance was causing the behavior problems. I've had to do the elimination thing with 2 kids and Dr's were worthless in helping both times.

Seriously?
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#14 of 35 Old 06-28-2008, 11:28 PM
 
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I'm so sorry for you and your LO that you both have to go through this, it is difficult. My ds was allergic to just about everything edible as a baby (and still is). We put him on Neocate One Plus (made for babies over 1 yo). He seemed to thrive on this and I began using it as I would have used cows milk in his diet. He self weaned from BM at 20 months and that's when he went full time on the Neocate.

I read early on in the post that you mentioned trying Neocate and I wondered if you had any success. Our Dr. assured us that anyone can tolerate Neocate (not sure if that's accurate, but our ds did tolerate it and to tell you the truth it was the first thing he could take in besides my TED BM). Looking back I wonder if he was actually allergic to my BM and not only the foods that I ate. Alergies can be so confusing to figure out the source. Good luck. I'll send some positve thoughts your way!
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I read early on in the post that you mentioned trying Neocate and I wondered if you had any success. Our Dr. assured us that anyone can tolerate Neocate (not sure if that's accurate, but our ds did tolerate it and to tell you the truth it was the first thing he could take in besides my TED BM). Looking back I wonder if he was actually allergic to my BM and not only the foods that I ate. Alergies can be so confusing to figure out the source. Good luck. I'll send some positve thoughts your way!
My dd had an anaphylactic reaction from 6 oz of Neocate so no, not everyone can tolerate it. I know of several kids who have not tolerated it.

Seriously?
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#16 of 35 Old 06-28-2008, 11:49 PM
 
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I read early on in the post that you mentioned trying Neocate and I wondered if you had any success. Our Dr. assured us that anyone can tolerate Neocate
*Almost* all kids can tolerate Neocate. There are a small percentage of kids that can't use the elementals. In that case, doctors can construct specialty elementals for kids...presuming you can find at least one starch/grain that works for your child. It is very rare and the custom made formulas are very closely monitored for strength and changes as a child gains weight, etc. I learned about them on POFAK (parents of food allergic kids). Some of the parents of kids in the "no foods/few foods" subforum would be able to tell you more about these unusual formulas.
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#17 of 35 Old 06-29-2008, 12:19 AM
 
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Thanks Satori and preemiemamarach for that info. If things don't get better for us soon, we might have to look into more doctors again. I agree Satori that most doctors couldn't care less about intolerances... it's really frustrating.

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#18 of 35 Old 06-29-2008, 09:29 AM
 
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My dd had an anaphylactic reaction from 6 oz of Neocate so no, not everyone can tolerate it. I know of several kids who have not tolerated it.
Wow! Anaphylactic from Neocate, how scary for you both. Yah, that's why I said that I'm not sure if our dr.'s info was accruate or not, it's just what he said, probably assuming our ds would be fine with it.

I think one of the hardest aspects to deal with when dealing with allergies is finding the right dr.'s that don't patronize you, give you false information (like I'm sure many of us heard besides myself that the foods we eat do not get into our BM so no, his/her reaction can't be from that), and that take it seriously.

Good luck to all of us on this road...
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#19 of 35 Old 06-30-2008, 04:27 PM - Thread Starter
 
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*Almost* all kids can tolerate Neocate. There are a small percentage of kids that can't use the elementals. In that case, doctors can construct specialty elementals for kids...presuming you can find at least one starch/grain that works for your child. It is very rare and the custom made formulas are very closely monitored for strength and changes as a child gains weight, etc. I learned about them on POFAK (parents of food allergic kids). Some of the parents of kids in the "no foods/few foods" subforum would be able to tell you more about these unusual formulas.
Thanks for the info about POFAK- I'd heard of the group, then totally forgot about it. We are now on day 5 of Alimentum, and his reactions (eczema, screaming, gas, now frequent stools) are leading me to believe he won't be able to handle it.

Question for anyone who can answer- do reactions like eczema usually progress to more severe problems? We are doing a milk and non-hydrolyzed milk-based toddler formula trial at the hospital on July 8th, but I'm wondering if that will be a waste of time, given his early reactions to Alimentum. If milk is going to give him issues that just increase in severity, I'd rather do one of these custom elementals with a dietician than put him (and us) through misery, KWIM?
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#20 of 35 Old 06-30-2008, 06:33 PM
 
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Google "allergy march." Many allergies begin with eczema, then progress to asthma if not addressed.
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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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#22 of 35 Old 07-02-2008, 11:26 AM
 
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sorry, i shoulda asked you over here about the bottles by mouth and if he has improved with solids...
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sorry, i shoulda asked you over here about the bottles by mouth and if he has improved with solids...
no prob!

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.

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.

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.

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.
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#24 of 35 Old 07-02-2008, 05:28 PM
 
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'd rather have to custom blend something based on rice milk.

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.
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?
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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no prob!



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.

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.
I'm sorry I hope the new formula works out.
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#26 of 35 Old 07-02-2008, 09:16 PM
 
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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?
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.
yikes! You can get Neocate for $10-13 a can on ebay

Seriously?
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#27 of 35 Old 07-03-2008, 11:39 PM
 
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yikes! You can get Neocate for $10-13 a can on ebay
There was a guy here just arrested for taking orders on ebay for Neocate and not fulfulling them. First see if you qualify for WIC and then check your insurance, under both pharmacy and durable medical equipment.

Jennifer, LPN and nursing student, Doula, CPST, and VBAC mama x3 to
AJ (5/03), Evan (12/04), Ilana (11/06), Olivia (2/09), and Unity (8/2012)

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#28 of 35 Old 07-04-2008, 06:15 PM - Thread Starter
 
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There was a guy here just arrested for taking orders on ebay for Neocate and not fulfulling them. First see if you qualify for WIC and then check your insurance, under both pharmacy and durable medical equipment.
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! ), and I saw just how terrible his skin looks. 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.

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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#29 of 35 Old 07-05-2008, 01:37 AM
 
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Google "allergy march." Many allergies begin with eczema, then progress to asthma if not addressed.
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).

To OPoster, I haven't seen too much in the way of hugs in your responses so far. Let me offer one... 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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#30 of 35 Old 07-05-2008, 09:38 PM
 
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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.

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.

I've got to run, but wanted to get that out there asap.
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