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."

Thursday, February 9, 2012

Buying time....

So much has happened in the last few weeks, we are still trying to process through everything (in a place where changes are still happening).    The last update I gave was that Little Man was scheduled to have an endoscopy and covert his PICC to a Port (for IV nutrition).    Little Man has been on IV nutrition since Sept., 6mo. now.  We gave him gut rest and a chance to catch up- on nutrients such as Vit.C and iron but mainly on growth- he gained 6# on TPN!  He had 3mo. gut rest and then we tried zucchini, which didn't go well - not a full reaction but didn't see the benefit to push it because it was making him sick, FPIES or not- we needed to set it aside if we wanted to trial something else.  Such is the way it has been with too many foods for him- they cause symptoms that could lead to FPIES, or not, but he is not tolerating them and the benefits do not outweigh the risk.   By not tolerating them, I am not referring to a reflux flare or a rash or even some mood changes- I am talking about a whole different child emerging, with a wide range of symptoms (depending on the food), with random throwing up and questionable stools and just a whole heap of a mess of a child that is surviving each day....and of course not to mention that he shuts down to eating when he starts feeling like this and associating the pain/discomfort/vomiting with the food. Despite that, we pushed through several foods and got no where, except increased vomiting, no weight gains, a dramatic drop in hemoglobin necessitating a blood transfusion, again...after almost 4 weeks and with that drop in hemoglobin- we waved the white flag....we needed a time out.    An evaluation on what was going on and where we were heading.

With the scheduling of his surgery for a port, we wanted to be sure we were making the right move.  We called the allergist we recently started seeing and asked for an appointment before the scheduled scope/surgery - she agreed and got us in.    We also got an appointment with our GI.   As our Allergist put it well, "there are too many cooks here and no one is following the recipe".  We needed to get everyone on the same page before we put him through surgery!   Well, as if in a twist of fate, little man developed fevers 2 nights before his scheduled surgery- and we found ourselves in the ER being evaluated for another line infection.   In the ER, he was found to have increased white cell counts and he vomited I was sure he must have a line infection (sepsis)....but after waiting for 48hrs to see if/what cultures would grow and finding nothing- we suspected he actually had an FPIES reaction - although we still do not know to what!  We spent 2days in the hospital and his surgery was cancelled but his scope procedure was kept.   The scope results initially looked good- and we were hopeful we were finally going to see healing but the next day when the biopsy results came back, we found we were wrong- he continues to have blunting of his villi.   Although they are not as bad as they have been previously so we are hopeful they are healing, but healing takes time....

With the scare of a line infection, surgery was cancelled and then further discussed- was this the road we really should take?  At this point, what are his risks of being on IV nutrition vs. his risk of trialing a formula?  Either a modular non-corn elemental (we've searched and struggled for 2yrs to find that!) or Alimentum Ready to Feed (RTF). The question is- the risk of surgery and continued TPN or the risk of reaction to Ali RTF?  Which one is a greater risk?    With catch up growth established, nutritional status stable, line infection negative, and - most importantly- 2years since any trace of dairy protein was ingested and reaction from, we decided to trial Alimentum RTF.

Alimentum RTF has a casein hyrdolysate (a hydrolyzed "pre-digested" milk protein), but even more importantly for our corn allergic little man is that it is the one of few formula's NOT in a corn syrup base.  It has tapioca starch as the base.   Little man has previously reacted to tapioca starch but it has been 18mo. since that and we have never been sure if that was from his disaccharide deficiency or if it was an FPIES reaction- it was severe and he was hospitalized because of metabolic acidosis from the dehydration and dumping diarrhea.   So, this trial is a challenge - a challenge of his FPIES, a challenge of these ingredients.  It doesn't come without risks but we weigh the risks of keeping the IV nutrition and this challenge with his GI doctor and we decide it is worth the risk.  It is time, we have bought time by moving away from all dairy derivatives at 6mo. of age when we realized he had more than "just" an intolerance to it as he continued to get more sick as he got older and introduced more foods.  We have bought time by having him on TPN (IV nutrition) for the past 6mo. to heal this gut, give him catch up growth, and make him stronger.   His body has shown us with recent trials that he still has high re-activity to new foods but we remain hopeful that this could be something his body would accept.  

For us, FPIES has been about doing our best to keep him thriving while buying time....

1 comment:

  1. My son was diagnosed with FPIES in August. He will turn 2 in April and we have yet to find a safe food. And we are questioning whether his neocate formula is causing a constant slight reaction. Talk of TPN has started and I was wondering if you had any advice. Did your son show any positives to patch skin testing?
    Reading your blog makes my heart ache for you and your family. This is a truly evil syndrome that no one understands unless they live it. Good luck! If you ever need to vent, my email is