I know that taking a break from a food can intensify the reaction - I know I've seen it in more than one place, but this is the first one I found that references a break: "The disease presents in two phases: the initial presentation is that of a chronic disease while the antigen is being ingested. This can be followed by an acute phase if the antigen is removed from the diet and subsequently re-ingested, with symptoms occurring about two hours after ingestion. In a young child, the...
Amanda, you are on top of things this morning, answered my post in both spots!! I am really starting to think it is from the reintorduction. We are supposed to get our Vanilla Elecare today, so I will try that and see what happens. Hopefully there will be no issue, but my instinct says otherwise.
So sorry for you and for Carter. Nika seemed to have a very similar to Neocate last spring. Our GI dr gave us Neocate, Elecare, And Elecare vanilla to trial. I mixed 20% formula with 80% breast milk on a number of occasions, a few days or weeks apart, while I was working part-time last spring. It was a struggle to get her to drink the bottles and she seemed to react to all of them by waking in the middle of the night in pain, unable to sleep, and having difficult middle of the night poops.
I understand what you guys are going trough, my daughter wasn't able to tolerate any formula, we even had to take her off the breast, at that time we didn't know what was wrong with her, just the fact that she was in pain and had blood in her poop, so the GI doc pit her on something diferent, when she was 10 months I tried to give her Elecare and she vomited all the bottle so we kept giving her what my GI told me about something that is not formula but it has all the nutrients and vitamins I...
RadN4, did the new Elecare contain dha/ara, that the original one did not? I read about it last spring and saw that the neonate had dha added in and thought that may have been the problem. I just ordered Elecare for infants to try again and it looks like they just started adding it in there, too. Just a thought...
Thanks everyone! The elecare was the old one without the dha. I informed his allergist and also told her I would not be comfortable giving him elecare again at home. If she wants us to try again, it needs to be in the hospital. We are still suffering from the 2 ozs 4 days later.
This is really interesting because Samaya is the total opposite. She reverts back to neocate junior when she is recovering from a reaction. Normally she is on Splash only, but she has to have her "chok-it baba" when she isn't feeling well. I actually watch for when she stops asking for it as one sign she is feeling better. Sorry I'm not more help!
Kara is the opposite as well! When she's not feeling well all she wants is her ba-ba, but she'll ONLY drink regular Neocate! She won't touch splash or chocolate but will tolerate tropical once in a while. Hope Carter makes a turn around quick!
Well, we are the opposite too! Brynn always wants her baba! I always thought that it probably coats her tummy when it is inflammed. B is on the vanilla elecare too. She seems to want more and more formula lately, and is really getting sick of her few foods. Time for something new! Good luck, sorry I wasn't much help!
Thanks everyone! It has become concerning because Carter used to be the same way too, drank lots of formula while recovering from a reaction. Apple juice during a reaction and formula in the after stages. Yesterday he told me that Vanilla hurt his tummy. i am still not sure what to do with that. Does he really mean it or is it just something to say? He is 2 after all. Nichole was kind enough to give me some beef broth to try as well as some safe chickens to make my own chicken broth. I knew...
Was just getting on to see how he is doing....hope he is starting to feel better. So strange that he is self limiting- the only time Sam has done that was when he was on Neocate- he self restricted- which got to extreme measures like this after the corn fail. I would suspect if there is some acute inflammation from the reaction, if there is something in it that his body is "on the fence" about- maybe not FPIES reacting to but not fully tolerating? that he does ok with when his intestines are...
I think you are absolutely right, and I've worried about this for months. The Vanilla Elecare contains soy oil. We know soy is a classic/typical trigger for him. I am guessing that we are facing a build reaction, similar to what we saw with Vital Jr, only then it was milk. I have poured more formula down the drain in the last 2 weeks! We are waiting to try the broth until tomorrow moring, Who doesn't like beef broth for breakfast? I'll keep you posted.
I think our little ones are going on a similar part as far as formula goes (except mine might be older). Eliza was on Vital Jr for 6 months before she had a built up reaction to the dairy in it. She has been on Elecare for about 5 weeks now and after we trialed soy milk, I think that she is starting to have smaller reactions to the soy in it. :-(
We had the exact same problem with the vital Jr. This whole thing wouldn't be so bad if it wasn't for Carter saying his tummy hurts within minutes of drinking the elecare. Carter is 2. 28 months. I have no idea what to do now. We are trailing chicken broth and I'm not sure what I think yet. We are either seein reaction or die off. Low grade fever, headache, mocousy painful poop, cranky, tired. To sum it up, lost!
crap. crap, crap. Really? Poor Carter!! He had chicken before, and you had to pull it- what were his symptoms then? The same? Darn it. Ugh- I want chicken to be safe for Sam too....seems like such a friendly meat to be able to have. Keep us posted! Hey- does everyone love that we get e-mail notifications of the replys we follow? Love it!
I'm glad he can tell you but understand the fear of not knowing if it's really that or not. I've been giving Eliza the Elecare every day since Saturday and have not had another reaction (except for some screaming that seemed more like pain than a tantrum on Saturday). I'm going to have to retrial the peanuts and avocado again because something made her react the other day. Oh and I do like the email notifications.
I took Carter to the ped today for a weight check. His weight looks good, still up and down like crazy, but good for him. He's drinking about 6 to 12ozs of formula now, so that's something! And he's eating more food. So all in all we are moving forward!
Is this the same little guy from one of the FB groups that failed Neocate Jr or am I confused? Neocate Jr. I know how ZERO soy. My cousin's son is on Elecare but not for FPIES--tons of IgE allergies, even more than my guy.
Did he refuse the unflavored? I'd be happy to send you some of my extra Tropical if you'd like to try it. I've tried it, it tastes like orange juice without actually having oranges in it. And totally soy free too.
He refused the unflavored. I tried the different flavor packets and the splash and he won't drink them. We tried the unflavored Elecare too and he refused it as well. Did I mention that he's tubborn when it comes to food? Does the topical contain any dairy at all? Let me chek the ingredients, because its one of the few formulas that we haven't tried. And he loves oranges. He can't eat them, but he loves them!
No, no dairy. My son is IgE to dairy. Corn syrup solids, canola oil, coconut oil, safflower oil. The full list is here: https://www.neocate.com/shop/p...neocate-junior.aspx? And I totally hear you on toddler 2 year olds with FPIES. My son will be 2 in November, is mildly autistic, and has sensory issues so even when I FIND safe foods I usually can't get him to try them. At least he is typical toddler in that he tends to go for the "beige" food group?
We seem to go through stages where Carter refuses his formula. It is always after a reaction or illness. He is 28 months old now and this time he went for 5 days without any formula consumption. He seems to push it as long as possible before he...
I finally got Carter to drink some unflavored Elecare last night. He usually drinks the Vanilla, but we have been out for almost 2 weeks. He probaly only had a couple ounces of the formula, I made it in a smoothie for him. Exactly 3 hours later,...
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