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."

Sunday, January 8, 2012


Little man has been on TPN for 5monthes now.   TPN is total parenteral nutrition and it is nutrition through a PICC line (Peripherally inserted central catheter), which is inserted into a vein.   So, he receives his nutrition through a vein.   The disclaimer here is that although this is part of our Little Man's FPIES (and what this blog is for), this is not typical for FPIES.   Although, it isn't uncommon for some kids with several FPIES allergies to have G-tubes, which is a feeding tube inserted into the stomach to allow for formula to be fed through the stomach; this is typically due to several severe reactions causing the little one to refuse to take enough nutrition through the mouth, or have complications from severe reflux necessitating the nutrition via a tube inserted into the stomach.    We have previously discussed a G-tube for little man but it wouldn’t change that his body does not accept any commercial formula’s; so the benefit vs.risk of a Gtube has not been enough for us to pursue it.   Little man’s FPIES results in severe inflammation, inflammation that doesn’t seem to turn off (is this an auto-immune component or simply his FPIES, we are not sure).   The inflammatory mechanisms have caused persistent small intestine villi damage; again we do not know why.   
Little man received temporary TPN in December last year for a month after soy challenge revealed villous atrophy, weight loss, malabsorption.  We knew his body benefited from the nutrition via IV.  That his body knew how to utilize these calories and bypassing the gut meant no malabsorption.  

This summer when little man had severe Vit.C deficiency resulting in Scurvy, he needed immediate Vit.C replacement to turn the Scurvy around.   Vit.C in this country typically comes from corn starch, added to foods, enriched in products, in over the counter Vit.C supplements, and even in pharmaceutical grade Vit.C supplements- tablet form, liquid form, any form.   There are a few products available that come from tapioca starch; but Little Man had a severe dumping diarrhea and metabolic acidosis reaction from that last year.  We did not have a supplement that was known to be safe.   He also was declining again from the persistent malabsorption following multiple trials.   It was decided that another PICC would be placed and TPN would be initiated.  The PICC was placed and IV Vit.C started in August, TPN was initiated in September.  It’s now January, it’s been 5mo. with a PICC line and overnight TPN feeds, 12hrs to provide ~800 calories; his homemade formula that he continues to drink during the day provides the another ~400-600 calories. 

TPN has given Little Man a break, gut rest while getting a break.  Complete nutrition that doesn’t cause an inflammatory response in his intestines.  No food trials for a few months, while getting nutrients his body has been missing for too long.  The homemade formula is missing or deficient in ~12 vitamins/minerals.   B vitamins are the big ones, being a plant based protein source, Vit.C (as mentioned) is another one. Some other ones we don’t often think about but are important for their own functions in our cycles of nutrition.    I know his nutrition needs, but I cannot provide for them.  This is an extremely frustrating component of this allergy for me, the knowledge of incomplete nutrition but not being able to provide for it, all in the same breath.

TPN has given Little Man significant weight gain, catch up growth.  He has gained ~1/2#/week while on the TPN and is now over 30#!  He went from 2T clothes being big on him to now fitting in some 4T clothes!  It has been dramatic and so great to see.    His hair also has grown in really well.    As mentioned above, he was missing some nutrients but in addition to that, he was also malabsorbing many.   His homemade formula provided the same amount of calories- or more! And yet he could barely maintain his weight much less gain weight.   He had times when he would gain (probiotics is one, taking breaks from trials is another) but then we would do a trial and he malabsorb for a few weeks again before evening out and then have to spend time catching up on the weight loss.  A vicious cycle.  TPN threw a spoke in that cycle and allowed him to gain weight and catch up.  

TPN has given Little Man the IV hydration his body needs after a reaction now that we have started food trials once again.   IV nutrition is the treatment following an FPIES reaction, the hydration he gets overnight via IV is exactly what his body needs to “flush out” the toxins the body turns his food into; we can see that clearly for him…and we are so grateful to not have him suffer for days on end.

So, what is the worry?  He’s thriving on TPN, can’t he just stay on TPN?  A PICC line (the IV access line he needs for the TPN) is high risk for infection that can quickly lead to sepsis.   Little man has had this once, I don’t want to see that ever again.     It was reassuring to see his body fight so hard, and know what to do, under such dire circumstances.   But I never want to see him have to endure that again.   But each day with the PICC line is a risk that it could.  TPN is also very hard on organs, liver and kidney’s that have to filter these substances directly- with no filter from the intestines to assist in this process it goes straight into his blood – directly feeding his cells.  These risks are high.  TPN is not designed to be forever, for now the benefit has outweighed the risk for Little man as it is what keeps him thriving, giving his gut rest while we wait for his immune system to mature – to not attack food as toxins.

So, how much longer will he have TPN?  It was supposed to be a more temporary situation but the gut rest alone hasn’t been enough, the nutrition it provides hasn’t been enough.  It has all helped significantly but it has not erased his body having FPIES.  It does not erase that we still have to trial all foods to find him a menu, it has not erased that he has recently had reactions to strawberry, egg, potato, and he refuses to eat coconut, pork, beef, cauliflower; and now even pineapple is questionable.  TPN gives us the safety he needs to push through food trials….but the clock is ticking….


  1. Hi,

    I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

    Check out our web site at For a good overview, click on the "New to Oley" button.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  2. Thank you so much for this resource!!