Friday, March 8, 2013

Neo-Gate 2013 - A Week of Elecare

When last you heard, we were going to be giving Elecare Jr. a try.  Here's to a week of Elecare, what it's done for us, and where we are today...

3/1 - Day 0 - We received the OK to discontinue Neocate Jr. and begin Elecare Jr.  For the first night in more nights than my sleep-deprived brain can recall, we all slept.  Nobody threw up!  I was hoping it would help, but I didn't dare hope it would help this quickly!

3/2 - Day 1 - Maybe this isn't a fluke!  He didn't throw up!  This was a really great day, and it gives me a lot of hope that maybe - just maybe! - we have found a solution for Aidan.

3/3 - Day 2 - Still not throwing up!  Unfortunately, Aidan was a very angry baby today.  He woke up with a blistery bottom and was very screamy.  I'm a little nervous, but he's not throwing up, so can I really complain?

3/4 - Day 3 - This was a good day.  His mood was better, so maybe yesterday was some kind of anomaly.  A two year old being two.  Until midnight, that is.  Aidan woke up very suddenly and very angrily, screaming and arching his back.  He can't be refluxing, can he?  We're still on a PPI, even though I can't imagine anyone still thinks he needs it.  I'm starting to be reminded of food trials.  Specifically, the part where we fail them.  But it's so confusing, because most of the day is really good.  We'll keep up the reflux meds and keep going with the Elecare - because there's nothing else to try.

I spoke to Mimi at CHOP today and arranged to pick up more samples of Elecare Jr.  This stuff is seriously precious cargo!  Huge thanks to CHOP and Mimi, for continuing to work with us while we try to figure this out.  At least we aren't alone.

3/5 - Day 4 - Not as great a day, but still not terrible.  He woke up mid-nap screaming and refused to go back to sleep.  But I feel like it (might???) be safe to say that he's not throwing up his feeds anymore, which is a huge relief.  It tells me that it's not Aidan's little body failing him somehow.  It's Neocate.  Neocate failed him.  Which I guess we knew, but now I'm even more confident.  By bedtime, Aidan's cheeks were starting to look rashy and red.  This worries me...

The really nice thing is that now that Aidan's not throwing up constantly, he can eat on the go a bit easier.  Eating while running, jumping, and playing is now on the table.  He's begrudgingly getting used to the backpack - and I think it looks adorable on him!

3/6 - Day 5 - Aidan's got upper respiratory symptoms today.  He's been on his inhaler since yesterday.  He's sneezy and snotty and coughing.  We've had another little guy in daycare with him for the past few days, so maybe that's why, or maybe these are more symptoms that I need to care about while we figure this all out.  (I love playing "sick or just a toddler??")  Anyway, Aidan's face is still red and crusty today, which is a big part of his traditional soy reaction.  We're keeping an eye on it.  He's also dealing with some diarrhea and a sore, red bottom.  He's complaining that his belly hurts, but we did just have a button change last night, so hopefully he's just a little bit sore from that.  Pretty please don't be allergic to Elecare, Aidan.  I don't have the best feeling about this, but we'll keep going.

In super exciting news, Aidan has gained 4 ounces this week!  More than we can say for his progress in the past 3 weeks on Neocate Jr! 

3/7 - Day 6 - Aidan is congested and wheezing a little bit - I guess maybe he did come down with a bit of a cold?  His cheeks are still red and crusty from time to time, and he's still having diarrhea and a diaper rash.  He's feeling very clingy and overly emotional - He woke up several times overnight crying, asking to be held, and holding his tummy.  I really hate to keep doing this, but what other choice is there?

3/8 - Day 7 - Aidan is coughing a lot while he takes his feeds.  His tummy is still bothering him, and his diaper rash is getting worse.  He's very tired and cranky.  :(

So it's been a week now.  Aidan is worlds better off now that he's off the Neocate Jr.  I'm really thankful for that.  But I feel like Elecare isn't exactly the right solution either.  I don't know what else to do, though.  I'm NOT going back to Neocate Jr.  I'm afraid to try Neocate Infant, because I really don't know what the situation is over at Nutricia and honestly, my faith in them is pretty low.  I'm afraid to try flavored Elecare if we're already concerned that he may be reacting to the unflavored.  I'm really hesitant to try a steroid - we've been down that road and it was awful.  So what's left?  He's keeping the formula down and seems to be gaining some weight - so do we just go with this because it's the best we can do?  Can that really be the answer for my baby?  When he wakes up at night, holding his tummy and crying, can I really look into his little face and tell him that this is as good as it gets?

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