Dr. Know It All

Our doctor appointment with the allergist at Children's in Denver left a lot to be desired. No new information was given to us.

He just confirmed that we're dealing with non IgE mediated reactions to foods. DUH! I'm not the parent who comes into an appointment with a specialist without doing her research first. I'd already seen 2 allergists before this appointment, 1 of which was actually helpful. I've been reading every medical journal article I can find on the subject of FPIES and food intolerances. I've been talking with mom's who have walked this same path and reading their stories through blogs and email contact. I went in there as prepared as any parent can be when dealing with FPIES. There are no rules, and every kid is so different, so you have to do what is best for your child as a whole.

I expressed my extreme desire to continue breastfeeding through all this mess, and was greeted with some opposition, which I figured would be the case. The allergist told me that elemental formula may be our only option as things progress. BLECH! Both formulas available contain over 50% corn syrup solids and they cost a pretty penny. Daniel reacts to broken down corn proteins in my milk. These corn syrup solids can set your child up for a lifetime of health problems (obesity, diabetes, more allergies). One FPIES mom had her son, who reacts to corn, on an elemental formula for 5 months. His intestines were scoped at that point only to find craters in the walls equivalent to those they would find in a severely malnourished child in a 3rd world country. You can find her story about elemental formulas HERE and HERE. Often, you have to fight the insurance company for coverage, and even when approved, you'll still be spending quite a bit. So why would I want to feed my child a formula that can cause more harm than good, and have to pay an arm and a leg for it? God is working to help us find a baseline with my breastmilk, and we are getting SO close! Hopefully, by the time he sees the GI we'll have it figured out so I can start adding more foods into my diet!

The allergist said I need a calcium supplement, which I already knew. I've been planning for a while to trial some calcium rich foods in my diet (organic unsulphered blackstrap molasses, broccoli, bok choy, figs) due to the difficulty of finding a supplement free of Daniel's triggers. Plus, the body absorbs nutrients from whole foods, much better than from a lab created pill. I also need vitamin D, which is easy here in good ol' sunny Colorado! I have a supplement that is vitamin D suspended in olive oil with nothing else, so that could be an easy addition as long as olive oil doesn't bother him.

Their biggest concern was Daniel's iron level, which is something I've been concerned about too, due to his daily blood loss through his diapers. He decided not to test him that day because we have a GI appointment in 10 days and he didn't want to do any more needles than necessary since the GI doctor will probably test his iron levels. Something I've learned in my research is that these kids with "leaky guts" have an imbalance in the bacteria in their guts. The bad bacteria tend to feed on iron. On top of him bleeding on a daily basis for the past 3 months, these bad bacteria are eating all his iron. When you give a child with this problem an iron supplement, the bad bacteria multiply, causing an even worse imbalance. This cancels out the progress in healing that may have happened. It's a very vicious cycle! I plan to combat the vicious cycle by using probiotics in my diet and starting Daniel on a safe one, and only using iron rich foods (enter blackstrap molasses again and of course, my 2-3 lbs of grass fed beef per day) to up the iron content of my breastmilk, which is more bio-available than supplements anyway. In order for the body to absorb iron, it needs vitamin C, that's where my brussels sprouts and mangoes come in handy.

I don't feel that this allergist is going to be the right fit for our team, but I think we have to give him another shot since he is one of the "best in the country." I may not be a doctor, but I'm definitely not an idiot, and I won't allow myself to be backed into a corner just because there's an M.D. after his name. I am the parent, and I get to make the decisions about what is best for my child. After all, I am the one who grew him and pushed him out pain med free, I change his dirty diapers, clean up all the vomit/spit up, wipe all the tears, comfort away the pain, eat next to nothing to keep him alive and growing, I am the one who knows him best.

Now that I think about it, I'm wrong. I don't know him best. God does.

PSALM 139

You have searched me, LORD,
   and you know me.
² You know when I sit and when I rise;
   you perceive my thoughts from afar.
³ You discern my going out and my lying down;
   you are familiar with all my ways.
⁴ Before a word is on my tongue
   you, LORD, know it completely.
⁵ You hem me in behind and before,
   and you lay your hand upon me.
⁶ Such knowledge is too wonderful for me,
   too lofty for me to attain.
 ⁷ Where can I go from your Spirit?
   Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
   your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
   and the light become night around me,”
¹² even the darkness will not be dark to you;
   the night will shine like the day,
   for darkness is as light to you.
 ¹³ For you created my inmost being;
   you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
¹⁵ My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
   How vast is the sum of them!
¹⁸ Were I to count them,
   they would outnumber the grains of sand—
   when I awake, I am still with you.
 ¹⁹ If only you, God, would slay the wicked!
   Away from me, you who are bloodthirsty!
²⁰ They speak of you with evil intent;
   your adversaries misuse your name.
²¹ Do I not hate those who hate you, LORD,
   and abhor those who are in rebellion against you?
²² I have nothing but hatred for them;
   I count them my enemies.
²³ Search me, God, and know my heart;
   test me and know my anxious thoughts.
²⁴ See if there is any offensive way in me,
   and lead me in the way everlasting. 

God is the all powerful one in this situation. I don't know how I would get through this without Him. Not only does He know Daniel best, but He knows me best too. He is the one who gives me the strength to continue on this rocky road every day. He leads me when I'm lost. He carries me when I'm weak. He gives me the knowledge to make the best decisions for Daniel whom he has placed in my care. Everything I have comes from Him.

Even our appointment with Dr. Know It All...