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:
“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.”
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:
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.
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?
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!