Tuesday, March 19, 2013

Neo-Gate 2013 - Are you sick of my updates yet?

I'm sorry that I have nothing more exciting than this to write about.  Maybe I should - but I don't. 

We stretched our two cans of PurAmino out to last 3 1/2 days.  The household is kind of split on how we feel about it.  Tom thinks it's the best formula we've tried.  Megan has no opinion.  I think it's no worse than Elecare, but really no better either.  I think it makes him hyper and extra emotional, which I guess the Elecare does as well.  All other things being equal, I take equality as a reason to choose Elecare, because it's easier to get my hands on if (WHEN) Medco decides to delay our shipment for no apparent reason - as they've done EVERY three months since we've started these formulas.

The plan right now is to get him back on Elecare Jr. (CHOP - I'm coming to raid your samples closet) until we can get in to see Dr. Liacouras (GI) on the 29th.  I need to spend some time between now and then gathering my thoughts and coming up with a game plan (seeing Liacouras without knowing what you want from him is a disaster).  I think the game plan will include having him scoped and biopsied as soon as humanly possible.

In addition to the (IMO) obvious - ruling out any anatomical issues causing this sudden feed intolerance - My rationale behind the scope is this:

Possibility 1 - He scopes clean - Great!  Fantastic!  We keep him on Elecare Jr. and decide that the behavior changes we've seen since things with Nutricia went awry are not related to his EGID.  We can then turn our focus back to weight gain and feeding and speech work.  We can also donate our small stash of "safe" Neocate Jr. to children who aren't able to survive on Elecare Jr.

Possibility 2 - He doesn't scope clean.  Elecare isn't working.  We decide how best to stretch out the "safe" Neocate that we have and what to do as we move forward.

I'm cautiously hopeful for Possibility #1 even while I think Possibility #2 is the more likely scenario.  But it's a plan, and it's as far ahead as I can go right now.

No news yet from Nutricia about the testing done on the product that we shipped back to them.  We are supposed to hear something this week.  I doubt they'll find anything, but God do I hope they do.  It's insane to think of the lives that could be changed (infinitely for the better!) if this could be straightened out.

In other news, and this is really a post all of its own, I've been able to team up with several other moms whose children are affected by this disaster.  They've put me in touch with people willing to get us some safe formula at low cost.  There's not that much formula out there at this point, and it warms my heart that someone ensuring that no one goes without while there's still something we can do about it!

So as soon as we get Aidan to see his doctor, we can start him back on his safe formula  - at least a little bit, at least sometimes, at least it would be a break from what's making him feel so badly.  Some boxes of formula arrived yesterday and I cried (happy, grateful tears!) the entire time I was putting that precious powdered gold away.  I'm so thankful that people like this are out there, willing to help give my little boy a chance. 

This is what I'm fighting for.  This is why I'm doing this.  This is why I can't just "leave it alone".  He's sweet, and he's beautiful, and he deserves to be happy and healthy.


  1. no, we are not tired of your story, please keep us updated. I stop by everyday to see how he is doing.

  2. Medco has once again delayed our shipment of neocate jr. Spoken to so many supervisors with no answers except for "availability" issues. Beyond frustrating.

    1. How can they DO that?! A child is depending on that!!