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, August 13, 2011
More tests....and an answer?
Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron, and his nutrition labs are not coming back low - he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.
The next morning, the team comes in and our Pediatrician exams little man- his daily assessment but also was paying particular attention to his fine hair, dry scalp, sore/red/inflamed gums, his joints....and he announces that they want to get another blood draw- a pause...really? My severely anemic child has already had 17cc's of blood (at least count) taken....he's gonna need a transfusion to replace all of this! But they want to run one more level...
A blood level of Vit.C....he might have scurvy!! His symptoms match and the ER physician who assessed and cared for him in the ER spoke with our pediatrician and suggested we run a vit.c level. I, of course, consent; and I am following- scurvy....this really could be it.
But now what? How do we get him Vit.C? I ask if we can do it IV.....I don't remember why he said we can't because they moved on quickly to "no, but we found...." They think they have found a non-corn based Vit.C supplement- because it isn't in corn syrup. Unfortunately, from prior experiences, I know better. I instantly said "No"....no, you did not because that is not possible- I have checked, I spoken to pharmacists here who taught us that ascorbic acid comes from corn, tapioca or beet. But that the available ascorbic acid (Vit.C) in this country is most often corn. Corn is his worst allergy, tapioca was an acidosis response (he was so-so sick), and we have not tried beet yet (although I am open to- I know this isn't on the shelf). Unfortunately, we have had to learn the hard way about corn derived ingredients and why would I make him sick when he is already so sick? ...we have been there, we have wanted to "will" his body not to react...he can't react- his body NEEDS these nutrients, right? We were given our answer when we did this very thing- with a multivitamin that the only source of corn was in the Ascorbic acid (vit.C) and it was fermented, washed, and then tested for proteins in their lab, and it took 3 pills for him to have a full blown vomit/diarrhea/dehydration reaction from it; we vowed that night that we were DONE with supplements- that he would have whole food trials only. We KNOW he needs a vitamin, we KNOW that!! But just his need for it does not somehow magically override his allergy to corn. No, we can't even risk making him that sick- on top of being so very fragile. There must be a better answer. I don't know what it is yet but there must be.
Unfortunately, this is the underlying tone of why we must go back to CHOP for further support and insights..."just feed him", "push through night wakings, extreme pain, pallor, lethargy, bloody stools, eczema....do not call a food a fail unless there is extreme vomiting and dehydration"- that is what we hear all too often. Our experienced allergist at CHOP has advised from the very beginning: any vomiting, diarrhea and/or constipation is a "fail' in an FPIES child- their body is not tolerating it and it is only a matter of time before their system attacks it, being "primed" with these responses. Unfortunately, we have not been able to have any foods not cause some degree of his reactions and we have been stuck. We must go back to CHOP as they need a full follow up assessment. We do not push through his symptoms because when we have in the past, they have resulted in a very, very sick little boy- sometimes I wonder if the chronic reactions are harder on their systems than an acute response? I know it isn't really a comparison but I can't help but wonder what the difference in the immune system is with these spectrum of reactions.