Thursday, February 28, 2013

Our Neocate Story - The Background

When Aidan was nine months old, he began drinking Neocate.  I firmly believe that it saved his life.  It wasn't until he began the Neocate that he started growing and thriving - gaining weight, taking developmental leaps, and laughing.  Watching his beautiful personality unfold was a gift that I can never repay - because I truly believe with all my heart that we never would have made it to this day without Neocate.

You'll understand, then, why I'm so heartbroken that Neocate is failing us now.

The first year on Neocate was wonderful.  I use the word "wonderful" sort of ironically, since "wonderful" included more hospitalizations and stress and worry and surgery than any baby should have to endure - but through all of it, we could trust that his formula would keep him strong and healthy.

In August 2012, Nutricia redesigned the graphics on the label of the Neocate Jr. can.  It was such a non-event, I didn't even give it a second thought.  I wasn't sure when I'd see the new label, but I didn't care - it's a label.  Whenever Medco got it and shipped it, I'd have it.  More importantly - who cares?  It's a graphic on a label!  

This non-event started making news soon after the "New Label Neocate" hit the shelves - small pockets of people began voicing concerns with the formula.  Children who had been tolerating it for a lifetime suddenly couldn't tolerate it any longer.  Late in 2012, I did read something about this online - but we've had so much of our own going on, I just didn't have the emotional energy to give this more thought than Oh how awful.  I hope they fix it.  I'm so glad that's not us.

January 2013...  Our new shipment of Neocate arrived - (and oh, hey, there's that new label) - and life was busy, and I was getting ready to go back to work, and I didn't have much time to connect one dot to another - but Aidan was sick.  A stomach bug, but not a stomach bug, because he never got worse and he never got better.  An allergen exposure, but not an allergen exposure, because keeping him home/cleaning the house/increasing our vigilance never helped. 

First, we noticed the allergy face.  The tell-tale scaly red eczema rash on his face that always tells us he's gotten into something.  That comes with the allergic shiners - the ones that make him look like he's gone a few too many rounds with the heavyweight champion of the world.  But of course it didn't stop there.

Then came the diarrhea, complete with blisters and open sores anywhere that poop touched his poor little bottom.  And the vomiting, more often than not, when he drinks or we pump in formula.  Vomiting that leaves him dry-heaving and exhausted in the middle of the night (and let's not get into the increase in laundry...)

Maybe the worst part is his mood.  My normally sweet-natured little boy becomes so angry - furious with the world for making him feel so badly, and furious with me for not fixing it.  (No, I take that back.  The worst part is definitely the vomiting.)

So here we are today, two months later, feeling angry and confused and betrayed by what has always been a constant source of reassurance to us.  My little boy cannot eat - literally cannot eat - without being violently sick.  And we can't just stop feeding him - we have to keep trying - so every day is just as awful as the one before.

We are not in this alone - and over the coming days I'd like to tell you more about what we've tried and what we're planning to try and what our path forward is.  In the meantime, you can learn more about children just like Aidan who are living this too.

Save Little Michael

Lidija's Hope

1 comment:

  1. I'm so sorry Aidan has to go through this and it cannot be easy as a parent to watch this happen to your child. I pray that the problem is fixed and that Aidan's life is easier when dealing with feedings.