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, January 30, 2011
Even as I sit here and type- I am doubting the fail. Why would I doubt the symptoms that were off baseline and adding up? How can I doubt the vomiting that was choking him, and soaked through his clothes, including a winter jacket and carseat?
I was using a buckwheat flour to make his Merry Muffins that he has been enjoying (and being incredibly tolerant of me changing flours on). The first day, he merely took bites of his muffin- which I was actually thankful for- so I didn't have to worry about taking it away from him when he got his "dose" for the day. He mostly played with it, but I am ok with him playing with his food- sensory stimulation is just as important for him right now.
Day 1: I began to see the RRD and spots on his bottom- I tried to think they were just residual from millet, or the orange pulp. His cheeks got a little rosy and he was drooling within 2hrs of eating those crumbs, he also had some mottling and irritability. I had a quick errand to run so I did that and he quickly fell asleep in the van -- it was only an hour or so before scheduled naptime so I wasn't worried about it but he woke up when we got home so of course he was moody for the rest of the afternoon, in fact he screamed for almost 2hrs straight- even inducing some vomiting from all the crying (or so I thought). But then he ended up taking a late nap, so thought we were getting back on track. And then when he slept so much better than he has in months that night- I was hopeful. He has been getting up every 2hrs. (not always to eat) and this night he slept a 5hr stretch!
Day 2: He enjoyed his muffins a lot more, and ate an increased amount (this is difficult to trial with muffins but just keeping his servings low and controlled), he had some similar symptoms - but nothing worse so I was hopeful we'd get through all 4days of this trial, take the break we wanted to take, and then restart in a few days. The afternoon resulted in another missed nap (not by my choice but his); but another late afternoon catch up nap. And again a 5hr. sleep pattern (happy for sleep!)! But only after some disturbed sleep in the beginning of the night, but nothing too out of his new "normal".
Day 3. He barely even touched the muffin, I made him some muffin tops (cookies) and he took 1-2 tiny nibbles and then wouldn't touch it the rest of the day. A morning diaper change reveals a very "shiny" diaper with mucous. The symptoms again: more disturbed naptime, also- is he a tad hyper? Or is it the normal over-tired toddler behavior? His mood is primarily happy but he is becoming less tolerant of things....a sort of Dr.Jeckyl and Mr.Hyde.....and I'm getting tired! :) Holding him during an afternoon bottle (in another attempt for a nap)- I notice his look of pallor, he gets a distinct bluish/purplish tint to his upper lip, also his eyes start to have this same tint. Afternoon goes on, and he is getting tired, well a 20minute nap for a 19mo. old will do that but he won't settle down for a nap. His brothers had been asking me all day if they could go to the pet store...do a little window shopping for their new pet hamsters...it was getting to be a long afternoon so I thought a change of scenery would be a good idea, so I agreed.
Little Man started his screaming tantrum right was we say we are getting ready to go...which is already odd because he LOVES to go "bye-bye"! He proceeds to cry but we load up to go anyway- thinking maybe he'll calm down when we get moving. The crying continues, and is curious as this is the 2nd time in 3days that he has had this crying episode in the van....these episodes he used to have ALL the time as an infant...so many days of SO much crying stress whenever we had to leave the house -- I simply dreaded going anywhere with him! But it has been SO long since he acted this way in the van, in fact the van seems to have a calming effect on him....not lately. I am trying to chalk it up to circumstance (crabby toddler from no nap), or mood/behavior (but he is actually a very mellow kid -- when not on food trials). As I'm thinking and driving, the puking starts....then choking and more and more vomit. He is covered. I am still driving. No where to exit. A mothers worst nightmare. He does stop after 3-4 good heaves. I immediately turn the van around and head home- not stopping to clean him up as it will only prolong the agony. He's still crying, screaming. We get home and I quickly get him out of his carseat and into the bathtub. After getting him cleaned off, I got him a bottle and we sat and rocked- he calmed down. Finally. He fell asleep after taking some from his bottle so feel he is doing good. Was this a reaction? Did he just choke from the crying? Maybe. I put the other boys to bed and I go to clean up his clothes and car seat. His entire outfit was soaked, as if I had dunked it in his bathwater with him still clothed (I did not), his winter coat is soaked through, his car seat has a puddle still in it, and a puddle that leaked to the seat below. The reality sets in. I want to cry. That is a lot of vomit. This is the 2nd vomit in 3days, with such off baseline behaviors. Buckwheat will have to be a fail, before it gets worse and we have a sick little boy.
I am defeated and deflated. We are missing something. He should be able to tolerate more than just peaches by now. I can't help but think we are missing something. Is it his gut health? Does he have yeast overgrowth? And underpopulation of good gut bacteria? Will a trial of a good probiotic be worth it, or will he fail that too? What about the peaches I use to make the muffins? They are a packaged peach product (Plum Organics)....I haven't called the company- just read the label. But what if these are the culprit? So many questions, still so many unknowns. We have come so far and yet we are still spinning. What are we missing?