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."
Wednesday, August 11, 2010
I just want to feed my baby!
A little background to catch up to speed.....Little man has been on an elemental formula for 6mo. with little improvement (and some worsening) of his FPIES. Our allergist advised his symptoms sounded like he could have a corn trigger intolerance. We trialed corn and sure enough, it only took a teaspoon to find our answer. What does a corn intolerance have to do with not improving on an elemental formula you ask? Well, if the base of that formula is corn syrup, and that corn syrup as proteins extracted but it isn't enough for a very sensitive intolerance....you have a problem.
Little man started on elemental formula's in the last week of Feb, I was instructed to stop nursing him because we could not identify what he was reacting to in my breastmilk since I was already on an elimination diet and it wasn't taking away his symptoms. So, we put him on Elecare. He did not like it, and we ended up in the hospital because he refused to eat for a week. We were able to get him to take it at the hospital but he had daily vomiting on that and we were starting to literally force feed him. We felt trapped, unsure of what to do; we were supposed to just give it "adjustment" time- thinking he would accept it more and more and the throwing up would be less and less. Well, the opposite happened, he threw up more and more and accepted it less and less. We had already "failed" Nutramagin AA so there was one elemental formula left to try....Neocate. We switched to Neocate and the daily vomiting slowed down, and he began to thrive a bit. We continued to have random vomiting and lots of tummy aches, and we were not able to introduce any foods. This was not healing his tummy.
I have kept daily logs. I went back and added up his daily caloric intakes from May 1 - July 20....his daily average is a mere 541calories- much below his needs were at the time of 800-900calories. He was hanging on. I have always said his body is very efficient. Even when he was throwing up daily, still on breastmilk- he was barely maintaining weight but he wasn't losing. His body knew what to do- it knew where the essential calories needed to go. He has never been behind on his developmental milestones. He doesn't "look" like a sick child. For this we are very grateful. We know our constant care of him and countless sleepless nights do show in this. We have devoted our lives, our whole family life to caring for Little Man.
So, back to today- little man failed corn. He ended up in the hospital last month because he had gotten so sick- his little body that has been so resilient through all of this was having a hard time keeping up this time. We attempted to move away from Neocate with it's trace corn proteins so he could finally heal and re coop, to give his little body a fighting chance. To do this, I began to build him a formula with Hemp milk, safflower oil, and tapioca starch; but his reaction to tapioca starch just simply drained his already drained system.
At the hospital, Little Man was put back on part Neocate. Without recognizing FPIES, the doctors could not see how Neocate could be making him sick. We knew, but we agreed that he needed nutrition. A rock and a hard place. We hoped to find a threshold of tolerance. We didn't. The symptoms kept building, pain attacks started the night we came home from the hospital, up all night a few nights; and then the bloody/mucous stools returned.
I knew what I had to do....move away from the Neocate once again- more gradually this time, while building his formula with fortifiers we were sure he could tolerate. Mix Hemp milk, safflower oil, and cooked arrowroot starch, and blend. He has a formula adequate in calories. Optimal nutrition will come with introduction of foods but we can't get to that with continued gut assault.
I slowly reduced the Neocate in his hemp formula until last Thursday he had none. Unfortunately, this coincided with the crumb ingestion (see post from last Thursday). We waited it out, not changing much to his formula except tweaking the same ingredients to find the right texture/calories per oz./and carbohydrates per oz. he can tolerate. By Sunday he was whining too much for me to continue this way....was it tummy ache from the crumb still, was it tummy ache from hunger. I couldn't take the chance of it being from hunger so I added Neocate back into his hemp formula mix. It immediately filled his tummy. Sunday night was ok. By Monday afternoon, he was beginning to be a mess- colicky behavior all afternoon and evening, couldn't fall asleep and was awake for over 2hrs in the middle of the night. Tuesday diapers were frequent and liquid, and by the evening - mucous and blood; he screamed all evening long and had restless sleep. His tolerance for the trace corn proteins in Neocate becomes less and less.....I have to take it back out.
So, here we are again- back to no Necoate in his Hemp milk formula. Once again, this IS adequate in calories- AND he drinks the calories he needs to. He needs 1000calories/day adn he drinks at least that- somedays more! Except today, today he is limiting that intake a little - which has been his typical following pain/diarrhea/throwing up/reaction to a food/formula. It might take a few days for him to trust his food again. We can't keep messing with his ONE true source of nutrition....
To add to his FPIES intolerances he also has a carbohydrate intolerance (dissacharide deficiency)- his body can not digest too much carbohydrate at one time. So, I can't put too much in his formula. He may be able to tolerate EATING some carbohydrate between drinking his formula, to meet his daily needs but we can't FEED him anything!
So, here we are again- and still....rock and a hard place. What do we do next? Hopefully, we can hang on, heal his gut and get a food trial underway are my thoughts today.