FPIES Children With NO Safe Foods: Nutricia Responds!

Earlier this week I wrote about FPIES Children With NO Safe Foods, asking for your help in spreading the story to help these children.

Y’all were awesome!  I hear there was a boost in Facebook “Likes” on Michael’s page, and I know several of you shared his link.  Thank you!  (And if you somehow missed it, please go and share HIS link now!)

In case this wasn’t clear from my first post, I do not know Michael, Lidija, or their parents.  I have never met them, spoken to them, or interacted with them at all – other than a “thank you” comment I received from Michael’s Mom, Jennifer, after  sharing her sons story.

I am simply a Mama dealing with the same medical condition in my own son, and can acutely feel the pain of what these families are going through.  

So other than being a Mama with a son that suffers the same illness, I have no personal interest in this situation at all.

That being said, I’ve now become a small part of the story: Nutricia responded to my post. Here is the response:

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“Hi, I’m Sarah and I work at Nutricia. We saw this post and wanted to provide you and your readers with an update.

When you have a child with severe food sensitivities, we understand all you want to do is help them thrive. We want that too. We have been in touch with the families about partnering with them and their physician to help find an alternative nutritional solution.

I also wanted to share our resource page that details our full evaluation of this situation (www.neocate.com/about-neocate/neocate-junior-update). It’s important to note that we did not make any changes to the Neocate Junior Unflavored product, formula or ingredients in 2012.

We urge any families with questions or those experiencing any difficulties with any of our products to please contact our dedicated team of nutrition specialists at 1-800-365-7354.”

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If you click on the link she provides, it outlines Nutricia’s response to the problem that has befallen 15 families (so far).  I’ve heard that what she says is the truth: they ARE talking with the families to try and come up with a solution.

I also received a comment from someone calling themselves “me myself and I” who apparently personally knows two of the families in this predicament.  Here is what this person says:

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Even if Nutrica didnt change anything…someone along the way had to have!
There are not just these two children, there are many, and the supplies are dwindling
Its not a matter of thriving but LIVING.
There are two sides to every story and I know two of these families and help did not come quickly.
I also know for a fact that they did not feel anything was being done until numerous people and the media got involved.
Something in that formula changed whether Nutrica or someone further down the line changed something….there is a change.
We are in the process of talking to labs to get them to test a can of the old which these children had no problem with and a can of the “new label” to get to the bottom of this; so far three labs are interested.
The truth will come out.

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I have my own theories about this situation, but I’m asking you: What do you think is the truth behind the mysterious, sudden reactions these children are having to a previously safe food?

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In the meantime, please continue to share the links to Michael and Lidija’s pages…I’d hate the thought that someone who could help them was taking a “Facebook Vacation” and didn’t see your share!  

And if you know of any other Families in this situation, please send me their web pages so I can add them for further sharing!  

Thank you!

Read their stories:

Save Little Michael
Lidija’s Journey

Donate/contact here:

Michael Gonzalez
Lidija’s Hope

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4 Responses to FPIES Children With NO Safe Foods: Nutricia Responds!

  1. Concerned about the science says:

    I read the Nutricia information page. From a pure troubleshooting perspective it seems odd that Nutricia has not proven themselves more thoroughly. There are a series of steps they could take if they truly wanted to lay the issue to rest.

    Run a small batch with current ingredients in a ‘testing’ lab. Surely they have facilities to run small batches for product development and in these labs they can more easily clean everything to reduce the risk of stray ingredients making it into their development products. Send a sample of this test run to affected families. If there is no reaction then there is a cross contamination problem on the production line. If there is still a reaction and they truly did not change any ingredients then the problem is with ingredients Nutricia is receiving from their suppliers.

    It’s a simple solution, since these children are already reacting the families would be happy to participate. If the problem is with ingredients from suppliers it becomes more dicey since there are probably many ingredients used, but you apply the same logic and try to eliminate one thing at a time as a possible problem.

    It’s a flow chart solution, rather than a political one. It’s a yes/no answer rather than simply claiming there could be nothing wrong and bringing in a ‘specialist’ to say ” rice protein is very rarely allergenic and is not commonly involved in food allergies” therefore we can ignore that as a possible problem. This was one of the most offensive parts of Nutricia’s response.

    Let’s parse the statement from Dr. Steve Taylor. He says “Rice starch may contain trace quantities of rice protein and rice DNA.” This means absolutely nothing. He could say “Rice starch may be found on the moon”, but this statement would have no bearing on the problem at hand. It’s the word ‘may’ that invalidates the rest of what he said. They tested for rice DNA, however rice starch may NOT contain rice DNA, therefore the test is looking for something that may not exist even if rice starch is present in the sample.

    So since the specialist brought in with lots of letters after his name to overwhelm readers with his knowledge and international renown in the field of food testing says the tests are not indicative of rice DNA presence, but also said that rice DNA may not be present in a sample of pure rice starch.

    This was the point where I really started to doubt Nutricia. Does anybody else see the inconsistency in what the independent specialist claims? Has anybody else seen that there is a simple solution rather than a complex one?

    So it comes to a simple solution or continue to count on the ability to spin a story and do damage control. I’m betting that a corporation will take the spin and control stance, but I hope they prove me wrong.

  2. busydeb says:

    The expiration date of October 22, 2013 has come and gone and still no answers for these children. Cannot someone help?

    • Carrie says:

      I know, Deb, it’s awful. Apparently, Nutricia has done all it is willing to do. The good news, though, is that Michael has found ONE safe food: hemp! So there is a bit of hope there for him, at least.

      It’s not that hopeful for all the children affected by this, and there have since been other formulation changes that other children are reacting to, so all in all, the situation sucks and there is just nothing to be done.

      EXCEPT – if you adhere to my personal belief that GMO’s and chemicals are at least partially responsible for our childrens’ problems – FIGHT FOR GMO LABELING and BUY ORGANIC! Better yet, plant a garden. None of this will fix the problems we already have with our kids, but maybe it will help stop these problems from getting worse in future generations.

      It’s kind of all we’ve got right now. 🙁

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