Tuesday, March 29, 2011

Milk Formula, Again?

Not really...  but it feels that way.  I remember coming home with my newborn baby.  I was so exhausted.  He cried, and cried, and cried some more - Then, on occasion he would take a breath and he would throw-up or have major gas.  I look back and have no idea how I made it through the first six weeks of his life.  He never slept - I am not kidding, I mean NEVER slept.  When he did finally nod-off it never lasted for more than 15-20 minutes and he was screaming all over again.  For the last day and a half, we have been back to that scary dark place again.  Braxton has been screaming his head off - constant crying and lots of gas.  He wakes up every 2 hours (okay, so it isn't quite as bad as it used to be) screaming.  He is throwing up more and that rash I hoped I would never see again has re-emerged on his beautiful little face.  He has the same cough that he used to have - a dry cough that you can't quite put your finger on.  I know what this means:  it's the Creon.  I had such high hopes!  We are officially pausing the Creon trial.  Maybe I gave him too much (a "sprinkle" to me may be a "dash" to someone else).  Maybe it is just too soon to try it...  I am second-guessing myself as I type: Maybe I am crazy?  No, I know what this looks like - we lived with him like this for so long!  I hate FPIES!  What does this mean for when we are supposed to start thinking about adding a probiotic?!  I am so tired of him failing everything!  He has done well for 5 or 6 days, and now this?!   Well, it's not the end of the world.  We will move forward and continue to try.  I can't wait to get the blood results back from PCRCD - maybe we will have more information at that point.   For now, I will look on the bright side.  He has gained weight and length since we got back from NJ - like a lot of inches and a significant amount of weight.  He is now officially in 6-9 month clothes and he is officially 6 months old (he was in a 0-3 until he was 5 months old!).  Life is good and we are blessed, but for now - no more Creon. 


  1. Hi Ashley,

    You've probably already googled this, but when I searched to find out what Creon was, I got this website. It does sounds like Braxton is having a bad reaction to the Creon.



    According to the site:

    Call your healthcare professional right away if you have unusual or severe: stomach pain, frequent or abnormal bowel movements, bloating, trouble passing stool, nausea, vomiting, diarrhea, worsening of gout, or painful, swollen joints, trouble with breathing, skin rashes, or swollen lips.

    The most common side effects include: increased (hyperglycemia) or decreased (hypoglycemia) blood sugars, pain in your stomach area (abdominal area), frequent or abnormal bowel movements, gas, vomiting, dizziness or sore throat and cough

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