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."
Friday, September 10, 2010
In hospital food trial.....postponed
GI appt was on Wednesday. GI doctor agreed with us that we were ready for a food trial, we've already discussed first foods to be in-hosptial trials. Little mans' reactions have been long-drawn out and make him very,very chronically ill for weeks. The doctors want to do what they can to learn about what a food pass or food fail looks like and learn what they can do to help his recovery. They will monitor labs, symptoms, diapers, intakes, and weights, and anything else that comes up.
Wednesday was a busy long day. 2nd day of school for 2 older boys and Little Man's appt in the middle of the day. We finally got his compounded Iron supplement, that we had compounded with Vit.C as well. Vit.C will help his body absorb the iron (in the supplement and in the hemp milk). I was so excited to give it to him, I got home and immediately mixed it up for him- a small syringe full of rust went into this mouth....and then I realized I didn't get clarification on the Vit.C origins!! I called the pharmacy and they assured me it was corn free. I breathed relief. My baby boy was going to get the iron his body so needed. He spent a lot of time napping that afternoon and evening but thought it was from the long and busy day. I worked the Thursday (the next day) but gave him his iron supplement before I went to work. A call from hubby later that day revealed Little Man had already taken a few short naps. One could hope this means his body is just getting the rest it needs, but my radar went up- what is going on with that? I get home from work and he is whiny but he's been whiny- he's been cutting his bottom 1yr molars so have had to write off his whining to this. But could it be from the Iron/Vit.C or is it from the protein powder that has sunflower seed derived Vit.E? Adding anything....Any.Little.Thing. to his diet always has to be a "trial". He's had the protein powder in large enough quantities- we would think we'd have seen more build symptoms by now but I will worry about this for another few weeks probably. Maybe I should just trial sunflowers to be sure?
Last night, Little man went to bed but was awake screaming twice before I even fully went to sleep. Thankfully, little man's daddy wasn't working today so he was up with him rocking and comforting him. After those two times, he wasn't awake again until morning so again- tried to think it was "just" teething or random awakenings. That is until I opened his bedroom door that morning to his cries in his room....and that smell is un-mistakable, the rotten smell of what we now coin as "reaction poop". Mucous, slimy, liquid full diaper reveals he is reacting to something. Is it the Vit.C? Did the pharmacy check close enough to be sure,sure,sure it is not from corn? Is it a build from the sunflower?
I called the pharmacy, they did some checking and the Vit.C (ascorbic acid) they used indeed does not come from corn but we were surprised to find out it does come from tapioca! Tapioca? I had read that as a possible source but I thought, what are the odds? Well, had he not had such a violent dumping diarrhea reaction from tapioca (what led up to landing him in the hospital last month). We still aren't sure tapioca was a FPIES "trigger" (no violent vomiting) but either way, his body did not tolerate it- and caused him to be very,very,very sick. So, tapioca in his Vit.C/Iron supplement would not be ideal for him. I am not sure where he will get Vit.C from, will need to find a fruit he can tolerate shortly after lamb. Ugh- sure wish I could just feed my son food....
So, we have postponed his hospital lamb trial- pushed it back a few days and if we don't see resolution of diaper symptoms (or if he has weight loss or blood in stools)- we'll push it back further. It is a BIG disappointment of a day....the emotions become difficult to contain when a food is failing my son; when a supplement made specifically for him that his little body needs fails as well, the load gets heavy to carry. How much can one little boy take? We were so ready for some things to start/continue going well. There are other plans...everything happens for a reason.
Stay tuned for food trial news...