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, November 4, 2010
Little man needs iron, protein sources are the richest sources of iron - meat being the highest. We just do not think he is ready for digesting a meat yet when he has had so much trouble with everything else we've tried. We had started discussing soy at the allergist 2 weeks ago, this allergist is somewhat familiar with FPIES, some of the things he said made me nervous (like pressing on with food trials if there was a little vomiting) but some things were ok, and he seemed to want to learn, and he is an allergist who was listening to my concerns. So, we discussed his soy intolerance. Do we remember vomiting with soy? No, it was a muddy time when we were losing ground but do not specifically remember vomiting- spitting up, yes but vomiting no. Colic and sleep disruption, and a nasty-nasty cough, yes. Soy formula has corn syrup in it, we were doing rice around that time as well (or had recently stopped it). My other boys were milk intolerant but did good on soy; and tolerated milk after 12-18mo. Further discussions like along these thought processes with the new GI and we all feel it is worth the trial. Maybe, just maybe he had a soy intolerance or sensitivity that he has outgrown- and was not FPIES for little man. We hope.
The GI here has not done FPIES food challenges so she wanted my input, she would create a flowsheet from our records of symptoms from little man's intolerance's. Everything from reflux, diarrhea, agitation, sleep disturbance, mottling of his skin, hives, eczema flares, diaper rash, hyperactivity to the end all of vomiting and diarrhea. There is no FPIES protocol here at this hospital, she is creating one to use for Little man. She is hearing my concerns, addressing them, validating them and supporting me through this. I simply can't ask for more at this point. We will learn together. Little man is a puzzle and we have a specialist finally interested in helping us solve it, one step at a time. One step in the right direction is a good step. Day by day is all we know to take this beast of a diagnosis. So, we proceed.
I obtained Organic Unsweetened Original Soy milk (WestSoy) from the grocery store and brought it in. This is what we would use since it is the simplest form, although the hope is that we would possibly be able to add a soy formula- Ross Carbohydrate Free (free of corn) to his hemp formula to add the micro nutrients, and iron he needs while on no food. But we start with the pure form of soy milk.
Yesterday, Little man was to receive 1oz. every 1hr for 4hrs and monitor for symptoms all day. Well, Little man (who- remember, did not read the literature on his diagnosis!) decided he didn't want to take the 3rd serving of Soy milk. We do not want to force feed him, so we decide to change the rules a bit (hey, these rules are being written for little man, I guess he wanted some input in them). We waited until he was hungry and then gave him 2oz. and by then he was ready for his nap so after a few additional ouncdes of his hemp formula and he fell asleep. He slept 2hrs and awakened not quite rested. He acted hungry, so we got more soy milk and hemp formula. He ate it well and stayed a little fussy. I got him more milk, was he still hungry? He didn't want more milk and soon didn't really want anything- put him down, pick him up, arch his back, pull up his legs, scream,....this cycle went on for about 30-45 minutes. I tried all the distractions that we have used during the hospital stay when he gets fussy or bored, nothing was working. He screamed and screamed, his skin was mottled, there were small red spots on his chest that popped up, his stomach was tight and nothing was helping. Finally he started to calm down and a new distraction got us ahead of the game. He remained clingy and fussy until a little over an hour later when he had a bowel movement. This diaper had mucous in it. What was all this about? Is it just digestion? Is it going to get worse? Is his body adjusting to the protein? Or was he just simply hungry or tired? The rest of the evening was pretty uneventful. Actually, it went better than uneventful - he was happy, giggly, interactive, flirting with nurses, singing, playing little boy....maybe a bit too active, he was a bit restless in his sleep until 11pm when he finally settled into a deep sleep. He slept well until 4am and then woke to eat. Went back to sleep and was up to face the day at 5am. He was restless and couldn't settle back into sleep; he did cuddle with me for about an hour and then we were up for the day at 6am but nothing was making him happy. He wasn't agitated but he was fussy. Something wasn't right in his world. He had more to eat at 7am but his mood did not improve....neither did his color. He was looking so washed out, pallor, bags under his eyes....where did that color go that we just had? Pink cheeks? GONE! Everyone noticed his new look, as I try to explain - and see if I can be heard this time around -- that this is one of the reasons why new foods become so difficult for us. This goes on for days at home while we trial a food ounce by ounce....not clearly going towards FPIES fail but clearly not tolerating and thriving from the food either. Stuck.
We pressed on. 6 more ounces of soy milk in 2 oz. increments when he was hungry enough to drink it. He stayed "blah" all morning, took a nap mid-morning and was worse when he woke up! Color off, flat affect- no expression, no playing, no interacting...had what his daddy calls his "poker face" on- just "blah". How can this be ok? This isnt' thriving anymore than not having the food is. Then, as quickly as this all set in- it was gone. Mid afternoon he finally moved away from me and started playing on his own, within minutes he was dancing and singing in the playroom! He stayed happy demeanor all afternoon and evening. We got a stool sample sent and some blood work. Now we wait for those to come back to see if it offers any clues.
We are all stumped. A soy pass would open up windows. Press on and he fails, he becomes so, so sick again. We don't like these symptoms but do not feel they are enough to "fail" soy yet, although they are not enough to "pass" it yet either. So, we will continue on tomorrow.....stay tuned