FPIES Children With NO Safe Foods

Take a trip into your imagination for a minute…

You are the mother (or father) of a precious little boy.

He’s adorable!  The light of your life.  You can’t believe how lucky you are to be his parent.  You snuggle with him, lovingly bathe him, tickle him and cover him with kisses.

Except, your precious little boy is very sick.  VERY sick.  Every time you feed him, he throws up, goes lifeless, gets diarrhea, has seizures, and often winds up in the hospital with shock and dehydration.

It doesn’t matter what food you give him, he reacts that way every. single. time.

You can do nothing.  Nothing but hold him while he vomits, brush the hair back from his face, rock him while he cries.

You are helpless, watching your son suffer through agonizing pain…from food.

Eventually, you learn that there is a medical food he can tolerate; a formula called Neocate Junior Unflavored.  It provides him with all the nutrients he needs to grow, so you don’t care that he’s two years old and still drinking from a bottle.  He can ‘eat’!  As a parent, you are so relieved you cry.

Now, with his safe formula in hand, you can slowly attempt to learn how best to heal his body…how to discover real foods that he can tolerate, without the pressure of watching him wither away in pain.

Do you feel the relief?  That gigantic boulder of weight lifting off your shoulders?

Your family goes along, happy with the formula, slowly learning more about his disease, when, one day, you get an email from the makers of Neocate.  They’re changing their packaging, they tell you.  But don’t worry, the formula itself will not change.

“That’s good,” you think, and then put it in the back of your mind.

Eventually the day comes when your newest shipment of this expensive medical formula arrives with the new label.  You put it in your kitchen cabinet, right next to the ‘old’ formula, and think nothing of it.

Until a couple days later, when you make up the days batch of bottles for your son.  You reach in the cabinet and grab the most convenient can of formula.  On this day, it is from the ‘new’ label batch.

And your son doesn’t want to eat it.  He insists it tastes “icky”.

You tell him it’s the same thing he’s always had, so drink it.  Maybe you even get a little impatient with him.

Shortly thereafter, he begins vomiting.

You wrack your brain, trying to think of what he could have consumed; the child ONLY eats the formula, after all…did he somehow get a crumb from something else?  Sneak a food when you weren’t looking?

This goes on all day.  The only thing you can think is that it ‘might’ be the formula.

So the next day, you make his bottles with the ‘old’ formula.

He drinks it right up!  No vomiting, no pain, no “icky” complaints.  So you feed him from the ‘old’ formula the next day, too.  Again, no problems.

The third day, you give him the ‘new’ formula again, just to see. 

Vomit.  Pain. “Icky”.  

So you call Neocate.  They assure you that the formula is identical; you and your spouse sat down and cross-checked the ingredients from an ‘old’ can with a ‘new’ can, and the ingredients list IS the same.  Still, you KNOW something changed because that is the only reason your son would become ill – he was exposed to an unsafe ingredient for him, and the Neocate is the only thing he consumes.

Neocate insists it did nothing different – even the glue on the label is the same!

But you know better.

After a second batch of the ‘new’ formula is sent as a replacement of the first batch (because they were willing to exchange one lot number for another), you try to feed it to your son.

“Icky”.  Vomit.  Pain.

So you call the FDA.  They tell you that you are NOT the first family to call and report this to them…an investigation will be done.

But an investigation takes time, and you just don’t have time.  You have a growing child that needs to eat something!

So you scramble, getting on eBay, Craigslist, Facebook, calling anyone and everyone you know, trying to buy up as many cans of the ‘old’ formula as possible.

Your family is going broke; the financial strain of trying to buy up many months supply of this formula is making things really hard for you.  You are worried you may not be able to make the mortgage payment.

But you do it anyway.  You are a parent, and you love your child.  You would do anything for him…even get evicted.

Eventually, the FDA says they can’t find anything; they’ve torn the factory apart, searched high and low, and the formula is the same.

Except it is not.  It smells different, clumps differently, has a different color to it compared to the old formula.  You ask the FDA if they’ve tested for rice, as the way your son is reacting is exactly the way he reacts to rice.

They checked it for rice DNA.  It came back negative.

But…you don’t need to be a biologist to know that DNA and proteins are different things – and your son reacts to rice proteins.

Neither the company nor the FDA will test the formula for rice proteins.

So what do you do now?  You have enough formula to last until October of 2013.  After that, your sweet, precious, beautiful boy may – quite literally – starve to death.  

You can always feed him the formula that is making him violently ill, but, c’mon, you can’t really do that.

Every other food – medical formula or “real” food – you’ve ever given him caused him to react the same way.

You have nothing to feed your son.

The reality hits you: you may have to watch your child die a long, slow, painful death…from starvation…in one of the fattest, wealthiest countries in the world…because a manufacturer changed something  about their formula (however small a change) and will not correct the change.

In your quest for formula, you’ve learned that you are not alone.  There are other families out there in the same exact position as you.

None of you want your children to die.  

 

What do you do now?

 

__________

OK, come back to reality.

Your  reality is not so bleak.  Your  reality does not involve the impending death of your child.

But I didn’t just make this story up: this IS the reality for several families in America right now.  

They need help.  Desperately!

So I’m asking you today…go read their blogs, go “like” them on Facebook, email/text/FB/tweet – positively saturate  social media with their contacts and stories.  

Let’s spread this word far and wide: Michael, Lidija, and other children NEED your help to stay alive!

– You never know who YOU know that might have access to the formula they so desperately need.

– You never know who YOU know that might be able to get the right word into the right ear to bring about a return to the original formula recipe.

– You never know who YOU know that might be able to help this family in some way.

– You don’t even really know what YOU can do to help…until you read their stories.

If you have any formula that fits the requirements for these families, please, please  send it to them as a gift.

If you don’t, please pray for them, share their stories as much and as often and in as many ways as you can, and, if you can afford to, send them a donation to help pay for the formula and testing they still have to pay for.

No parent should have to be in their position.

No parent should have to worry that their child will starve to death.  

__________

Read their stories:

Save Little Michael
Lidija’s Journey

Donate/contact here:

Michael Gonzalez
Lidija’s Hope

__________

These children both have FPIES, the same disease Mr. Happy suffers with.  At this point, Mr. Happy’s situation is not nearly as treacherous as Micheal and Lidija, but I feel the gut-wrenching agony of their parents nonetheless.

For Michael, Lidija, Mr. Happy, and all children with FPIES, I ask for your help.

Thank you!

__________

This post has been shared with Allergy-Free Wednesdays.

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4 Responses to FPIES Children With NO Safe Foods

  1. Sarah says:

    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.

    • me myself and I 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.

  2. Anonymous says:

    Images of old label vs new label would be useful for those who might want to keep their eyes out!

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