Pass or Fail?

I thought I would know by now if Millet was looking like "pass" or "fail"....unfortunately if I was to "call it" now, it would be fail.    Last night, little man was only awake once but he was in pain when he was awake- and it was all-too-familiar discomfort, but after almost an hour - I did give him some of his compounded corn-free ibuprofen and he then settled right down and slept another few hours, only to wake up too early and too grumpy. :(  But, here again, not enough symptoms to "call" it but things are starting to add up with too much familiarity and beginning to make me worry.   I then changed a diaper, lets just call it "weird", and "concerning" but not fully a reaction diaper.   He remained grumpy while I got his brothers ready for school and I got ready for work.  

Now, begins the guessing game - is this from the baking powder with corn starch? The crumb or two he may have ingested?  Could be.   Is it from baking soda or cream of tarter? Doubtful but could be.  Or, worst yet- is this an FPIES trigger to millet or an intolerance to millet? At that point- I'm leaning towards intolerance and taking a break to see what that does to his system and see if the picture can become less muddy over the next few days.  I work 4 days this week, so won't be home to monitor him anyway so a good time to just take a simple break.  

Little man had a lab draw set up for this morning.  We've been getting frequent checks on his labs, with his FPIES being a chronic illness- compounding situations have been sneaking up on us but we are learning more and more about FPIES and how things affect Little Man.    These lab checks take a lot out of him and this morning was no exception- especially since they had to try 4 times to get the vein!  Poor little man.  Results came back today and a short discussion with our pediatrician helped to calm my nerves between his labs being off and his questionable build reaction, with me being at work unable to do much about any of it.  His hemoglobin/hemotocrit and Iron are holding but not improved at all; although the good news is that his reticulocytes count is improved- showing his body is nicely responding to the iron supplement.  It will take awhile (6weeks or so) to begin to see a tiny bump in his hemoglobin/hemotocrit and iron levels from this though....it will be a slow process but we still feel this remains a better option than a transfusion at this time.  We are beginning to check other nutritional panel labs as well, to be sure his homemade formula is still helping him thrive (because as far as pain free and baseline and weight gain goes, he is thriving on it).    His other labs look ok.   

But that doesn't change the fact that he needs a tiny menu to round up his nutrition of micro nutrients.  We are fighting hard to get him this.  But in the meantime, he can't afford a set back- so we have to continue to proceed very slowly.   We remain between that rock and hard place.....he needs more nutrition in his diet, but he can't afford a reaction.  Does anyone have a crystal ball to see what we should even try next?   Do we continue with the millet?  I still feel like we should- I have been going primarily on instincts this whole time, and letting Little Man guide us along.  He isn't reacting during the day and in fact, he may even be improved- behavior, sleep, comfort, mood, etc.  But last night/this morning threw me enough of a warning sign to signal my instincts to take a break/slow down until the picture is less muddy (teething pain? cold? reaction? hungry?).  Maybe put millet to the side and get a fruit but then again- left in the same place we were last week- he won't eat a fruit...millet he was eating (another sign that his body isn't reacting to it- he wants it). 

Today, I'm left with FPIES=Feeling Powerless In Every Sense; tomorrow will be better.  It is day by day and sometimes moment by moment around here.  And today, I am reminded of that.

Teething, Colds, and FPIES....Oh My!

Little Man is working on his 1yr bottom molars. I know that for sure now, the right side has "tipped" through and the left side is red and inflamed. He has been fussy off and on and decreased appetite for the past ~2weeks. I can tell it is a different kind of fussy, he is consolable, it isn't screaming from the pit of his stomach, and his compounded ibuprofen helps a lot. But I still worry when he is fussy or in pain, my mind still goes back to all those days of constant tummy pains. Especially tonight when he spit up. He didn't vomit, he didn't throw up violently, but he hasn't even spit up in 2mo. So, I worry - just a little....

As I mentioned in my post yesterday, he also has a bit of a viral bug. Judging by how it is affecting other members of the family - it is making him feel just a bit icky-achy and off sorts...and actually he is coping with it better than his 3yr.old older brother! But, again, I still worry when he is "off" his baseline. Yep, I said BASELINE!! It is like a beautiful symphony - a baseline for an FPIES child with multiple intolerances/triggers is a difficult thing to come by. Making a formula he can thrive on when one of those triggers is clearly corn is the next difficult thing.....but we're finding it, and I'm doing it. I have optimized his formula well for calories, protein, fats and all the carbohydrates he can tolerate for a 14mo. old --although he is essentially a 14mo. old on a Vegetarian diet. It can be done. And it can be optimized by an Iron supplement made with Vit.C, which we will get on Tuesday! The hospital pharmacy here has the Iron and Vit.C powder and will compound him a supplement, that "will taste like rust" and it will be ready on Tuesday.

His weights are stable, he has not had blood in his stool for the past 2 weeks check, his tummy pain is gone, his diapers are "normal" and consistent, he is content, his lab check this week revealed his hemoglobin/hematocrit is holding steady (the minimum we were looking for- for it to not be dropping) and it will rise with the addition of the compounded iron this week, and some REALLY good news (for me!) is that his other labs are all picking up -- on my homemade formula.

When we first went to the pediatrician for help with Little Man's "issues", we got some initial lab work done at around 7mo.old. I had requested a Vit.D level to be done. There is much emerging research that is showing that many people are low on their Vit.D and even deficient- these low levels can have many varying affects on a body- especially a growing body of a baby. We were all a little shocked to find his levels VERY low, well past low cut-off for his age range. We immediately started him on a supplement and they climbed nicely. We had to stop that supplement because, despite it helping his Vit.D levels- I suspected it was giving him tummy aches (later learned I was right as there is corn based ingredients in it). Another check a few months ago (right before going to CHOP) revealed his Vit.D (and iron) were dropping again. Another indicator to me that despite exclusive elemental formula diet- little man was continuing to have intestinal inflammation. A recent check of Vit.D revealed it was climbing again- all on it's own. Sunlight? Hemp milk?

Another lab that we were alarmed was low was his Pre-Albumin. Pre-Albumin is a marker for protein status in the body. This lab was also below the cut off for low normal. It told me he either was not getting enough protein (breast milk), or that his inflammation was impeding him from absorbing it; or a combination of the two. We later confirmed he was indeed still reacting to components in my breastmilk even after giving up dairy/soy, and wheat; we now know he was reacting to rice and corn that I was eating in larger quantities to make up for the no wheat. The lab value for pre-albumin this week? Within normal limits!! Within the range of normal!! Hemp milk and decreased inflammation and his body is getting and utilizing adequate amounts of good protein for the first time in probably a year!!

We are not out of the woods yet, but each day we get closer and closer to winning this war- to successfully navigating these murky waters of our FPIES world.