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, January 15, 2011

Next steps...

We are always thinking of next steps...there is always something to be working on and working towards.   The scope following 3weeks of TPN revealed a healed gut (no inflammation and restored villi), IV iron successful in re-establishing his iron stores and red blood cells.  First step after TPN was re-establishment of his formula intakes.  It took a few days for him to re-adjust back to the calories and ounces he needed to but he did and is now taking it well, asking for his bottle.   Multivitamin trial was next.   Multivitamin = fail.  Disheartened because we were so hopeful.  Hopeful that we could find a vitamin to round out his hemp milk formula of the nutrients it is low/lacking, hopeful that a fermented corn-starch derived Vit.C would not trigger a reaction.  But, a mere 3 doses in- and violent vomiting followed by 3 days of diarrhea with dehydration. 

And now, the waiting....waiting for intestinal healing, for the inflammation to subside.  Outward signs of this? Weight gain, little to no sleep disturbance, no reflux pain....back to baseline. We don't have that yet.   It's only been a week.  Previous monitoring following reactions reveals that it takes a minimum 2weeks for Little Man's gut to heal- for him to get back to baseline.  A weight check this week at our GI appt shows weight maintenance.  We will follow up with a weight check again this week, as we watch and wait for any other signs of active inflammation to subside. 

Next steps? 
1. Sorghum puffs.  Ordered online, waiting for them to arrive.   I also have sorghum flour- so we will do a full trial (really hoping for an uneventful trial- it is a "bland" flour), adding the flour to his Merry Muffins and letting him eat the puffs.  Sorghum doesn't move us ahead on the nutrients front too much, but it does help his aversions and actually EATING his foods to trial.   The daily millet puffs really helped overcome a lot of gagging issues he was having, gagging issues we are seeing again.   The millet puffs have potential for cross contamination (despite millet itself being a gluten free food), so we are not allowing those for now (if ever).   Another mom found the sorghum puffs, so it was decided we will trial this next- to advance his oral motor skills. 

2. Quinoa.  Quinoa provides another good source of proteins, while also giving us a psuedo-grain to work with (quinoa is a seed) for muffins, cereal, breads, ec.  There are vitamins and iron he needs in his diet.  Hemp is a seed, quinoa is a seed.   Quinoa also comes in puffs- another snack. 

3.  Beets and Spinach.   Beets, spinach, and quinoa are in the same family.  "Foods belonging to the chenopod family-including beets, chard, spinach and quinoa-continue to show an increasing number of health benefits not readily available from other food families".  This link offers great information on not only the nutrition but the anti-inflammatory and many benefits of "powerhouse" of beets, spinach and quinoa: WHFoods.   Beets and spinach can be hidden in foods (like his muffins, some cookies and biscuit type product) cooked with the Quinoa!  What a great combination...if he passes....

4.  Multivitamin- this remains a dilemma.   I am hopeful (optimistically and maybe delusional) that we could build him a tiny menu specifically attuned to his nutrient needs.  But the reality is that we may not get there.  Because we do not want to risk continued fails, from corn derived ingredients in processed vitamins, we are taking a pause for continued research while doing food trials.   We will be coming back to the vitamin....

This could all take up to 6-8weeks to accomplish- depending on how these foods treat his body.  It could take longer if we have a fail, depending on the extent of the fail.   Stay tuned, we are hoping to start step #1 by the end of this week/this weekend- sorghum puffs!

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