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, January 6, 2011
I have found a few other "contenders" but this is the one that has the least amount of corn derived ingredients, the least chance for a reaction. If he can't tolerate this one.....well, I don't know....
We are on day 3 and already things don't look promising.
Day 1: 8am, Multivitamin given. 25min after giving it to him, he had hiccups....ok, could be random- certainly not a reason to stop a trial but, I take note. 2 hours later, his cheeks are significantly mottled (can be part of his cascade) but maybe his body is just adjusting, or maybe he's stressed or cold (other reasons for mottling to flare). His mood is good. 4 hours after giving it, he takes a long nap....again, this could be concerning- lethargy precedes reactions too. 7hrs after taking it, he starts having wet burps; and then a loose blow out diaper. Crap. Crap, crap, crap. 11hrs after consuming the vitamin, a wet burp leads to a gag while eating and throwing up. Not projectile, not violent but throwing up, he's gagged on his bottle before (not throwing up) but maybe it was just that. That night he didn't sleep well, was awake a lot but didn't want to eat. Didn't seem to be in pain- just couldn't sleep. Disturbed sleep. Well, maybe his PICC line is bothering him or maybe it was just something random keeping him from sleep. See how fun this is?
Day 2: wakes up with blow out diaper. 7am multivitamin given. Spits some of it back out (who can blame him?) It is a capsule that you break open and mix in something. I mix it in water. It tastes like, well- a multivitamin. His breath smells of vitamin all day. His color doesn't look good in the morning. A diaper change for, you guessed it- another loose, watery, foul smelling diaper- this one has small streaks of mucous. Changing him reveals the red ring that shows up when he is reacting to a food. Well, maybe his bottom is just getting sore from all the diaper changes. IV iron therapy day, long day but he was doing well all day. So, starting to hope that the symptoms are random or not going to build and worsen. The evening goes well, he has continued to eat well, and no throwing up tonight.
Day 3: Sleep last night was less disturbed, but there are cries in his sleep; and he is awoken in the early morning hours to a blow out diaper- explosive and watery. 7:30am multivitamin given, no spitting it out this time -- although he does NOT like the taste of it, he is a champ and he takes it from the syringe. 30min later, an explosive watery, with mucous strained diaper change. A call to the GI doctor to update on these symptoms. She is concerned as well but hopeful what we are seeing it re-adjustment from TPN to hemp formula that he is increasing in amounts daily. She agrees these are patterns worrisome for FPIES reaction specific to Little Man, but we need to push through to be sure, because of the importance of the vitamin and the non-specific pattern (at this point) to the symptoms. I agree. I am not here to make him sick and while the symptoms are concerning, they are not clear....yet. Only time will tell, only continued trialing will tell.
As I write this, I stop to change a diaper filled with mucous and hints of that rotten barnyard smell. I take a picture because the mucous is clearly there. The mucous is increasing, the diapers are increasing. His formula intakes are staying the same....formula he has always tolerated and has had no difficulties with since restarting a week ago. As I speak, as I write that I am trying to not be concerned, my concern grows. Especially since fussy Little Man has now entered, ups and downs of mood swings when something isn't right....
Day 4: tomorrow. Stay tuned.