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."
Saturday, September 4, 2010
Teething, Colds, and FPIES....Oh My!
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.