Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, July 14, 2012

That Mommy Instinct once again...

Before little man started going downhill again, my mind was going towards next steps.  I still wasn't feeling quite like ProViMin was a sure bet just yet- until we saw some follow up labs and weight checks,etc. but did want to start preparing for some food trials- to build his diet, using the tube if possible -- for the trials and to get re-acclimated to the tube to utilize it to get his caloric needs in without obsessing about every ounce of formula and having to choose eating over daily activities.  

We couldn't stay with our heads in the sand for forever, it was time to move forward.   So, I had made phone calls to get a follow up with the dietitian, and a follow up with the GI.  I also called home health to get them on the radar that we would want some assistance with getting Sam used to his tube again.  A week went by and no one called us back (no one from the GI office).  Hubby made the follow up phone call- to see if we could get some attention.  By now, things were starting to fall and the trials were getting further from my mind....

We finally got the follow up appointments scheduled.  But now, we have new things to discuss with everyone because I'm noticing he is not picking up on his eating- even though the heat has broke.  I did a 3day "snapshot" check of how many ounces he was taking and it was around 28-32....I wasn't positive how many calories/oz his formula was (with ProViMin mixed into hemp milk) and was thinking it was around 20cal/oz....this is not enough calories.   Maybe this is why he is so tired?  But then, why doesn't he eat (drink) more?  I am offering a bottle every time I turn around it seems- and realistically, it's every 1.5-2hrs, and he accepting them every 2-3hrs. Something just is not right.   It appears (from his symptoms) that his anemia is coming back (low appetite, low energy, and disturbed sleep), but why? 

We went to the Dietitian appointment this week, and learned his formula is more like 18cal/oz.  I almost cried.  He is hungry, starving himself...but why?  Why is he starving himself?? The other time he self limited was when the food hurt him.  More specifically, the formula.  He did it with Elecare- starved himself into a hospital admission when he was 7mo.old; he did it with Neocate before we switched to Hemp milk, he was doing it with Alimentum and now it the ProViMin or?? Either his appetite is really off because something is "disconnected" (his anemia or his carnitine or maybe even his thyroid?) or he is reacting to the ProViMin so he is self limiting- taking only when he is so hungry he can't not take it.   When you need ~1500 calories/day and instead you barely eat half that- what would cause that???  

He has a lab re-check in a week and a half but we decide we need to request to move it up, he is symptomatic and another week and a half he may need to be admitted to the hospital if we don't figure out how to help him.  

The lab draw was yesterday.....and it is concerning.   His anemia is back (why??), his protein stores are low (why??) and his Vit.D levels are low.  Well, an easy answer would be that he isn't getting enough but with the ProViMin being a powder - even though he's only taking in 30oz/day- he still gets the better portion of his nutrients from the ProViMin....certainly enough not to cause this.  Our Dietitian recommended we check a few other nutritional labs as well and they are within normal ranges so why would some be low and some be fine if he wasn't getting enough nutrition?  The answer seems to be that he isn't absorbing the nutrients, the iron is the same nutrient he malabsorbs when he has inflammation;  that the inflammation is in that place in his small intestine. And with protein stores being low, despite getting adequate protein intakes....he is malabosorbing.  But, why?  What is causing it?  Is it the accidental corn exposures?  Is it the inflammation from Alimentum not healing?  Is it from the ProViMin?  We don't know....we are hoping the GI will have some idea's but worried she may not.  

The pediatrician's recommendation is that he is clearly not getting enough nutrition on his current plan, and that he needs to be back on the Alimentum since that provided the nutrition he needs.   Quite frankly, this was poor advice.  For one, the ProViMin does meet all his needs.   The Dietitian has charted this, that he needs about a cup of ProViMin/day to meet 100% of every nutrient.   He is only getting 1/2cup right now (at best) but still getting a good amount of most of his nutrients.  The numbers don't add up....he should read the Dietitian's note so that he can give informed recommendations, to help us make informed and the best-interest-for-our son decisions.  The Alimentum took over 50oz/day to meet his nutrient requirements-- and he wasn't drinking that much...and yet he was malabsorbing even more.  He was not tolerating the Alimentum, and his body was rejecting it as quickly as it was taking it in....causing more damage to his stores than if he wasn't taking it at all!   How do we know this?  His behavior, his mood, his appetite, his sleep, his crying, his pale skin, his blue around his lips, his labs, his dramatic decline in iron stores and hemoglobin, his terrible-terrible looking and painful, leaking tube, his no weight gain, his volume-ness stools, and the last telling sign was the analysis of those stools, which revealed a high alpha1 antitripsin level and a high calprotection - indicating malabsorption of proteins and significant inflammation and enteropathy.   

His color improved on the ProViMin, his mood, his behavior.  His diapers have not.  My suspicion is that the Alimentum caused significant villi damage and that the ProViMin was working- when I was able to get enough in him, but with the heat and his decline in intakes, he started falling behind....and now we're seeing the (quick) effects of that.  

Either that, or he's reacting to the ProViMin- something subtle...  

So, the plan?  We need to push the ProViMin and see if things get worse or better.   He won't drink more so we will need to use the tube- it's make it or break it time with this tube.  We had our home health nurse come by on Thursday to see if he would allow her to check on his tube and even use it - and he did!!  It took a bit of coaxing but it ultimately went smoother than any of us anticipated!  We are encouraged that since he now doesn't have constant pain with it, that he can start using it again.   We will plan to give him whatever feeds he needs above his formula intakes, we hope to be able to do this at home but worry that the GI will want him admitted.   When he first came home from the hospital after having his Gtube surgery, he had the extension hooked up 24/7- there is a "button" in his stomach wall, that gets opened and an extension- the tube- hooked up to it for 'feeds'.   We took that extension off because it was pulling (and possibly preventing healing) and the tape was causing a reaction to his skin (painful).  Getting him hooked up for feeds since has been a challenge.  So, we may try this method again for a few days/week to see if we can get him back on track....or it will make it clear that ProViMin is a problem. 

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