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, August 14, 2011
Peach juice supplies Vit.C, Sun supplies Vit.D!
I bought some organic peaches Friday night and I prepared those into a puree and added water- and today we got him to drink at least a half of a cup!! It was probably only 2Tbsp of peach puree in water but something has got to be better than nothing....even if it is no where near enough.
We don't have the Vit.C lab result back yet- it could take a few more days but the level will confirm the Scurvy if it is there. It is odd that some of his other symptoms are decreasing but his leg weakness is increasing (hair isn't as dry, gums aren't as swollen, rash is gone....) but he is really weak- it seems to almost scare him, and he does seem to be in pain today so I gave him some of his compounded tylenol and his mood improved greatly.
Seeing him like this is so hard, and more than once we have been tempted to give him the darn Vit.C tablets we have sitting here - that are more than likely tapioca based. Here is what happened last fall when we gave him a Vit.C/Iron tablet- that we knew was corn free but we did not know it was made out of tapioca (we didn't even think to ask until after he reacted...another lesson learned; find out not only what ISN'T in the product but what IS! This is when we learned, from the Pharmacist that Vit.C (pharmaceutical grade) comes from: corn, tapioca, or beet (mainly corn).
It was September last year and our pediatrician wanted to start him on an iron supplement and we knew it had to be compounded; I asked her to put the order for Vit.C to be compounded with it. I knew he would need Vit.C, even if peaches gives him some. This is from my journal on how it went (2010):
Sept. 8, 2010: started iron/Vit.C = noted he had increased energy and took that as a good thing.
Sept.9: trouble sleeping, diaper had "reaction smell" and mucus.
Sept.10: Same- getting worse (took pic of diaper!)- yes I keep a "photo file of his FPIES symptoms, diapers and all!)
Sept.11: mucus continues in diaper and now has visible blood, sent Hemoccult and came back positive; clearly reacting to something. Stop Iron Rx.
Sept.12: very tired today, "blah"
Sept.13: hospital admission. Hemoglobin fell from 9.6 on 9/2 to 7.2 on 9/13!
We then found out the Vit.C was from tapioca and knew that is what he had reacted to. His hemoglobin continued to decline and by that Oct.29th- we were in the hospital again for a blood transfusion.
Tapioca fail (in July of last year) was a mystery reaction- much like soy...not much in the way of FPIES vomit, lots of diarrhea and lots of other symptoms; and one sick-sick little boy.
So, I'd almost rather it be from CORN than from tapioca!! Tapioca is scary....which is just another reason why it is so hard to push through trials- even if we don't get "classic" FPIES response symptoms- we get weird symptoms and what if it results in what soy or tapioca does? There is something strange going on in his immune system....I've been saying it all along- he has FPIES and something else going on in there....praying CHOP will help us get to the bottom of this.
And, for review: here is what happened when we "challenged" a corn derived Vit.C (in a multivitamin):
Jan. 4, 2011: first day of vitamin, had hiccups within an hour of taking it. Skin mottling started within 2hrs but his mood stayed good all morning. Took a long nap and awoke to a blow out diaper, lots of wet burps all afternoon and one in the evening that made him vomit a small amount. Very restless sleep all night. (and we kept going-we wanted this to work out!!)
Jan.5: has sores on his bottom and a red ring, stringy mucus in loose filled diaper.
Jan. 6: woke to a large blow out diaper, had another 2hrs later- slimy green with mucus. Mood still primarily good. Afternoon diaper (way more diapers than norm) had mucus and was very fussy and uncomfortable after, then at 7pm vomited repeatedly until emptied stomach and dry heaving. Rocked to sleep within a few hours and taking plain hemp milk and seems ok but wakes to have 3 explosive diapers through the night; and one right away in the morning full of mucus.
Jan.7,8,9: continues to have liquid, blowout, nasty diapers (5x/day), taking 70+oz/day, but unable to do lab draws on the 7th- but still has his PICC at that time for IV iron treatments and had labs drawn on the 9th and found to have significant dehydration (given IV saline with iron).
His hemoglobin didn't decline with this reaction but his weights did, and of course weeks of stomach aches, nasty diapers and disturbed sleep.
Now, which one do I choose? Tapioca derived Vit.C or Corn? Or wait until we can find another option? Just tonight on another search I found some further information about the IV Vit.C that warrants further checking on. Also, I need to check on a few sources found by fellow FPIES moms as well - a beet root one that looks really promising has my curiosity peaked. Hopefully we find something soon, and that he tolerates it.