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."

Wednesday, February 1, 2012

What did we learn?

Hopefully we learned more pieces to his puzzle placement and that what feels like 10steps backwards, might be a few steps forward?  

We had the recommendations from the GI that she wanted to try and push him, to push the food trials and stimulate his gut.  Has his body just forgotten what to do?  We took food away to go to elemental nutrition (and gut healing) at 7.5mo.old.  We were able to introduce 5foods within a few months, and then everything stopped.  Why?  She wanted to get a better picture of how his gut handled food before we commit him to longer term TPN (IV nutrition).   So little is known about FPIES mechanisms and what is known is more on the acute responses to 1-2 triggers.  The chronic reactions to multiple foods is complex.  Our GI hasn’t always known what to do to prevent his FPIES reactions while finding him a diet; but she has gotten him through some rough times, and she has advocated for what he needs.  The TPN he is on has literally saved his life.  Do I wish things were different?  That someone knew how to help him more?   Do I wish we knew what to do next to avoid having to make him sick first?  YES!  But little man's FPIES is complex, so even when we get one thing under control- something else sticks out of the box….and the harder we try to shove it all in a box- the more it sticks out!  There aren't any protocols to follow, we must simply follow him.

In doing so, we have learned with the TPN, that his body knows how to utilize most of his calories- there are a few nutrients that remain an open ended mystery still but have become more clear with the TPN supplying them – knowing that he is not malabsorbing them (or being malnourished as some may suggest). 

On TPN he has steadily gained weight (from Sept-Dec) and is now 30# (up from struggling to maintain 24# when we started).  He now gets consistently 1200-1400calories (800 calories TPN, 400-600 hemp milk formula).  It goes to show how much he was actually malabsorbing because his hemp milk formula intake was always above 1400 calories a day and he wasn’t gaining weight-  he would gain weight between reactions, only to lose it and lose ground again, during/after a reaction.  He always had these setbacks.  But the food break, with the IV nutrition has given him a chance to catch up- in so many area’s but the most obvious is his weight.  He also sleeps (mostly) through the night, he talks more, he gets to just be a kid more, less ups and downs from his chronic state.  With 6# gained and catch up growth, we knew he was ready for the food trials.   If his reactions have been because of his nutrition, we would now see if that was part of what was complicating things….and it really could be- I know this.  Micronutrients are important and he has been missing or malabsorbing many for so long- maybe a missing “link” in the chain of a cycle has affected the way his body can accept food?  Maybe it has complicated things? I would loved if it had turned out to be that "simple".  But, what we learned in the past month is that his malabsorption clearly made it harder for his body to recuperate but it hasn’t changed the way his body reacts (over reacts) to food.  The reactions, if anything are quicker now- which may be related to the TPN or his age; his body may be maturing?

TPN has given him IV hydration following a vomit session.  IV hydration is the treatment of an FPIES reaction at this time- sometimes a steroid can be given but that isn’t often used, first line is the IV hydration.   I have always wondered what IV hydration would do to help Sam’s reactions- he doesn’t go to full shock and he usually eats within 2hrs. of vomit, so we typically have not wanted to bring an otherwise healthy looking kid to the ER; however we always seem to regret that as the days that follow and he clearly is struggling to recuperate.   With the past month of trials, and subsequent fails- we have seen clearly how well the IV hydration helps him.  And yet, he still has struggled with the repeated reactions; so it doesn’t take away that his body still needs rest in between reactions to fully recuperate.   The IV hydration has made a huge difference and I am so grateful for it.   Without it, without the TPN- I would not have wanted to push him like this...we'd have been in the hospital by now for sure if we had!

In general, these trials and reactions have reminded me a lot of when he was still breastfed.  He would recuperate after a vomit or diarrhea session by comfort nursing- to the point that he was doing it all the time as we kept trying to introduce new and different foods; and that he was getting more and more behind- which is how we finally started to see he was really sick….because otherwise he was maintaining- he was getting the hydration and nutrition he needed, from the breast milk- just enough to keep him going.  

TPN has helped him to maintain his hemoglobin levels- he struggles with anemia for most of his life.  The break from foods (Sept.-Dec) he was able to maintain his hemoglobin with little variations.   The week of zucchini trial, he fell an entire point on day 2 of the zucchini trial.  He was able to come back up on that point as we proceeded slowly through zucchini but by the end of the trial, he was down that point again (further showing how he needs slow trials.   We (I) watched that and noted that during the zucchini trial- that his body was keeping up with recuperating really well; but the more we pushed the less it was able to fight.  We pushed through other foods trials and he kept gradually falling.   ON TPN- he is barely able to maintain his hemoglobin levels – getting all the nutrition he needs, that does not go through his gut.  Wow! Enlightening and very scary all at once.  Throw trials into that and he struggles, ON TPN!  Why is this happening?  We still do not know other than severe malabsorption.    We just had his labs checked again, 2 weeks later his hemoglobin is now down to 7.1 and he is in need of IV iron or a blood transfusion- it did not come back up on it’s own like it did with zucchini, like we had hoped.  

1 comment:

  1. wow. what a ride...and a busy few months (life?) hooray for 30 pounds!!!