Any moms drinking elemental formula? - Mothering Forums

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Old 04-07-2013, 01:20 PM - Thread Starter
 
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DD is 19 months old and despite starting an elimination diet at 3days of age and NAET (which worked for his 2 older brothers) he has continued to get new food sensitivities. He nor his brothers ever show up with IgE.
I started consuming EleCare myself 2 days ago.
Probably a bad sign about how nutritionally compromised I am, as other moms say it smells bad, but I find myself craving it and looking forward to it. DD however, will not even take a sip. We have an endoscopy tomorrow, so hopefully some answers in the next week of two. DD and I are currently also eating foods I think are safe (rice, buckwheat, oranges and apples)
My questions
1). How to overcome/deal with the need for solids?
2) how do I weigh the benefits of continued BF v. The risk of sensitizing him more not to mention I don't want to live without food! It's been 19 months of limitations. And the guilt, should I have weaned to elemental sooner to keep from creating more allergies or will he just get worse on elemental anyway and then he'll be in pain but without nursing to comfort him and provide an immune system for him?
The latest labs say he has nearly no IgA.

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Old 04-07-2013, 09:54 PM
 
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The bloodwork for allergy testing isn't reliable until they're over 2yo because their immune system isn't stable yet and there are still maternal antibodies washing out (even if a child is never breastfed--that has nothing to do with it).  So it's not shocking that the tests didn't line up.  Even so, IgE reactions are only one type of reaction.  I remember a good immunologist/allergist telling us years ago to "remove a suspect and look for a reaction"--stating that this was the gold standard, just horribly inconvenient.  But it's what we did and it worked.

 

Do you mean YOUR need for solids?  Or your child's?

 

And as a mom with an adopted child who came to us at 12 days and needed elemental formula, I can tell you that now at 4-1/2yo I wish I'd have broken the law that said I couldn't nurse her because 1) she is STILL taking that friggin formula; and 2) I believe it is creating a bigger problem for her.

 

I haven't been able to fully research this yet, but the elementals are broken down multiple times.  And from what I can see, they are basic sugars (your cells actually NEED sugars to function, but I'm wondering how much of the elemental formula has stuff OTHER than these basic sugars).  I'm noticing that now that my daughter eats solids (probably for about 1-1/2 years now) she absolutely gravitates to sugars/starches.  It's to the point where it's extremely hard to get her to eat anything else.  Ever.  I suspect that the formula has created a gut flora that wants sugars/starches.  Just a theory.

 

If you've been struggling this long, I would look at other underlying issues.  I recently had a client whose kids had 92-96 different allergies depending on the child (3 of them).  It turned out to be a metabolic disorder and now that she knows how to feed them--there really aren't any problems.  In fact, they no longer react to things they used to.  Their immune system is no longer so overstimulated that it's hypersensitive to everything.  That may be your sitch: not having found the irritants has your LOs system in overdrive--reacting to things they otherwise wouldn't.

 

Not sure if any of this helps, but hoping it might!


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Old 04-08-2013, 08:57 PM - Thread Starter
 
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How did she find out the metabolic issue?

 

Yes, my need for solids.  The toddler won't drink the formula.  Which is smart on his part because as long as he won't drink it, I can't/won't risk weaning him and having him end up tube fed.  At least not yet.  I had planned on nursing him until 3-4 years if he wanted but its so hard not eating food.

 

I agree elemental formula is not great nutrition but I ran out of options.  I'm trying to set up a 5 day rotation diet for us with venison, duck and lamb as the protein sources.  I guess Bison could be he fourth and sunflower butter the 5th.  But I'm suspicious of sunflower and the duck.  Not to mention I only have a little venison left that a friend gifted us.

 

Endoscopy today found nothing.  

 

As for cravings.  I don't know with him.  Asparagus was his first food and he used to love it, now I think it hurts him.  He really craves salt.  So while he does love dried cranberries and popcorn he also goes wild for meat.  He was slow to start on solids and then really into them, just like his older brothers and then stopped and was sweaty every day and barely napping until I took gluten back out of our diet after reintroducing it and thinking it was okay.


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Old 04-15-2013, 05:41 PM
 
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Are you going through an allergist or a GI doc or someone else? What kind of symptoms is he showing? My daughter had Eosinophilic Esophagitis, was undiagnosed until almost age 3, but tube fed due to FTT from 3 mos old. The scopes finally showed something at age 3 and she thrived on the elemental formula. She's now 9 and has totally outgrown the EE (10% do). 

 

The reason I am asking is until you know for sure what is causing the problem it's hard to find the solutions. Are the symptoms digestive in nature, or does he get a rash or have trouble breathing? I know what it's like to be half-crazy with worry and not be able to find the source of the things that are hurting your child. We went through an allergist (found out the blood and skin tests for food are not very reliable at all), three GI docs (the last one found the problem), and two pediatricians. Maybe it's time to get another opinion and start from scratch with a new doctor.


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Old 04-24-2013, 10:24 PM - Thread Starter
 
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We have two allergists currently working on this, a third who gave up, a GI, and a chiropractor/NAET
Upper endoscopy NO eosinophils, no ulcers, no helicobacter, nothing, nothing, nothing. Which is great. No reactions IgE ever but he has gut issues, pain issues, behavior issues, sleep disturbances, fevers, breathing difficulties, eczema, toilet issues. Skin testing so far has correlated 90% with what I've seen with elimination.
The only abnormalities is low VitD 15 (duh, he's allergic to dairy, eggs, fish, etc....). And low IgA 7. Then 11 on recheck but as he is not sick with diseases infusion therapy is not warranted. We are now on lamb, venison, bison, duck and goose supplemented with EleCare Jr. Other foods corn, olive oil, safflower oil, sun butter,nuts except almonds and peanuts, figs, cranberries, oranges, grapefruit, teff, millet, apple, rice, winter squash, chocolate Still running into something causing a reaction. That's a really limited diet.

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Old 04-25-2013, 05:51 AM
 
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Low D and all those things, have they looked at Celiac (though if off wheat, the testing isn't accurate)? Keeping food logs?  Are you working with a nutritionist? Honestly that list is pretty limited and seems to be extreme. Are you working with a large children's hospital or local Dr's? 

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Old 04-25-2013, 08:01 AM - Thread Starter
 
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Scsigrl
I am working with all specialists at this time. And yes I'm about to switch to total bitch mode here... Yes the list of KNOWN foods we MUST avoid is ridiculous. That's why I've spent over $10,000 out of pocket already on trying to find answers/treatments. We've tried GAPS twice. At first it helped some but now other than the winter squash he is allergic/sensitive to every f-ing thing on GAPS. I am waiting for my nutritionist appointment. Yes, I have food logs, photos, videos. Yes, it could be celiac that first sent us into the hell spiral but we have been off gluten for five months and he still got worse!
I am looking for advice/comisseration from other moms who had to drink elemental formula. So unless you have something to add..... Bugger off!
After 20 months of ED/TED with my third child I am sick of hearing, try GAPS or probiotics or and my favorite from a woman who carries an Epi pen for her own child, "oh, I'm sure he's not really allergic, he just doesn't like the taste of your milk.". After asking her about her experiences and explaining he nurses constantly!

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Old 04-25-2013, 08:35 AM
 
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Yeah, bitch mode for sure.

 

Have a happy day!!

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Old 04-26-2013, 02:45 PM
 
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I don't post much on this forum anymore, but this thread caught my eye.
Quote:
Originally Posted by USAmma View Post

Are you going through an allergist or a GI doc or someone else? What kind of symptoms is he showing? My daughter had Eosinophilic Esophagitis, was undiagnosed until almost age 3, but tube fed due to FTT from 3 mos old. The scopes finally showed something at age 3 and she thrived on the elemental formula. She's now 9 and has totally outgrown the EE (10% do).

This is absolutely not true. All current research shows EoE to be a lifelong, chronic disease. You do not outgrow it, and there is no cure. Other disorders can cause eosinophilia in the esophagus (the most common being GERD), so if you've miraculously been "cured" without continuing treatment, then it probably wasn't EoE to begin with.

Another note about EoE- you have to be eating trigger foods at the time of endoscopy AND have a sufficient number of biopsies taken to find it. A study published last year proved just how patchy the disease is (you can biopsy one spot and find zero eosinophils and biopsy an inch away and find 100), and that in people will low numbers of eosinophils, it could take 30 or more biopsies to actually find it!


OP- if you search back through some of my old threads (probably late 2008-2009), you'll see I was in the exact same boat. And I did drink elemental formula for 2 weeks. It did seem to help initially, but then DD started reacting again. Turns out, she was allergic to the particular flavor that I was drinking. She did end up being diagnosed with EoE, and eventually went on elemental formula herself at age 3, shortly after she weaned. We still, more than 2 years later, have not found even one food that she can tolerate.

Just wanted to offer some hugs. I know how frustrating this is.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
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Old 04-27-2013, 06:13 PM - Thread Starter
 
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Changing seasons. Thank you. We are now both doing EleCare Jr. as a supplement. His scope was normal. I'm praying its just the IgA and multiple food sensitivities. I keep finding lots from 2008 but not much current. It's so frustrating. The nutritionist just got back to me and recommended withholding nursing so he'll eat more solids. It's like no one hears that he wants to eat food and I have to stop him from eating it. Tonight he went to the fridge and pulled out his orders brothers' refried beans. It's awful to say, no beans, here have some corn syrup solids. greensad.gif
I could use some support and advice. I'm not even sure what I want to ask anymore. Even on our strict TED he's still reacting to something, sometimes. But he's a toddler with two older brothers so I have to look at what I ate for the past 3 days, what he ate and wonder about if its not just from picking something off the floor.

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Old 06-23-2013, 09:03 PM
 
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Late reply here...haven't been on MDC in a long time. Too busy running the same race with my kids. :) I have a 5 yr old with EoE and and a 3 yr old that has had 7 scopes, rare eosinophils but debilitating pain, and a list too long to post of other issues. I ate 4 foods for much of her first year. Supplemented her with elemental formula. Traveled out of state to specialized children;s eos clinics. And more history, pain and treatments than I care to relive between both kids.

 

She is currently 3, has stomach pain daily and many other symptoms have arisen. We are currently undergoing testing for mitochondrial disease for both girls. I wish I had magic advice but I can at least offer an understanding of knowing exactly what it feels like to be in the black hole you are in now. Feel free to PM me.
 

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Old 08-21-2013, 12:40 PM
 
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Let me chime in here for a minute and share my experience with elecare/neocate. My daughter's eczema at around 6 months got so bad to a point where she developed secondary infection. She was hospitalized for a week. Before hospitalization she was being breastfed and i was on an elimination diet. Just desperate to try anything to figure out the reason for her eczema. During the hospital stay, the doctors basically put her on an antibiotic drip and fed elecare thru her nose and basically force stopped bfing. The nutritionist urged me to keep pumping and that my milk was liquid gold. When she was discharged docs basically forbade bm and told me to feed her elecare. Did it make a difference in her eczema? That was a big fat no. Her eczema was constant until about last year and this year she seems almost free of it. (She is 4). In our experience the expensive formula made little to no difference.
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Old 08-26-2013, 06:49 PM - Thread Starter
 
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Eliminating foods does help my son. The problem was my health and nutrition.

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