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...

Oh Glorious Baseline...

I think we've almost found you! Thank you so much for all of the prayers from those of you who have been praying for baseline for Daniel! I think we've almost made it! His poops are yellow and seedy, still quite loose, but they haven't looked this normal in over 2 months. He's sleeping better for naps and overnight, even though he's still up every 2-3 hours to nurse, and his mood is greatly improved! I am beyond excited right now because this means I've found a combination of foods that I can successfully eat, along with the new found ability to start adding foods one by one into my diet to test their safety for Daniel! It seems God is showing me His timing is perfect once again, because as you'll see from my next post, the doctors are losing faith in my breastmilk.

Dear Father in Heaven, you have once again shown me how awesome you truly are! I thank you for answering our prayers by helping Daniel and I find a combination of food that works for us. Please continue to bless me with the knowledge to figure out what foods to try next and keep us on the path of healing. Put the right doctors in place to give Daniel the care he needs. In Jesus name, Amen.

Missing

Cabin Fever is hard enough to deal with, but throw in a sick kid who is attached to you (literally) every 2 hours, sleep deprivation, the same old daytime TV, and the inability to eat what's in the pantry and it makes it much more difficult. My days just seem to melt together. I rarely know the actual date, I just keep doing the same thing day in and day out, because right now, I have to be a machine. I have to keep going for my son.

I miss people. Specific people, yes, but just human interaction in general would be nice. I'm hoping my current friends will be understanding of my situation and not write me off just yet. I rarely get to leave my home or my parents' home. I have yet to be out on a date with my husband since my son was born more than 5 months ago. The only things I get to do are quick grocery runs and previously, an appointment or 2 at work. I can never be gone more than about 2 hours at a time because Daniel hates bottles and will only eat a very small amount from one, never enough to sustain him until the next feeding. If I get home and he ate that small amount just an hour before, he screams til I nurse him, then he pukes because he ate too soon. Something I've learned about my son's digestion is that he needs that full 2 hours to digest the first feeding before eating again or his tummy gets upset and stays upset for a few hours. I don't fully understand it, but from what I've gathered, it has to do with bile production and stomach acid not being at full strength because they're still working on his last meal. When you throw the new milk in there too soon, it doesn't get digested properly and I end up with a very upset baby. Another reason I have to be around to nurse him is my milk supply. I'm eating a very limited diet, and therefore my calorie intake isn't as high as it probably should be, making it harder for me to make enough milk to sustain Daniel unless he nurses from me directly as many times a day as he can. I need those nursing sessions to tell my body to keep making more milk, because unless you pump exclusively and set yourself up with it from the beginning, pumping doesn't keep your milk supply as abundant as a baby does.

Talking about my milk supply reminds me how much I miss food. I used to love watching cooking and food related shows, now, I avoid them like the plague. I loved reading cooking and recipe magazines, but now when they come in the mail, they go in the "read later" pile. I love experimenting in the kitchen and figuring out new ways to make gluten free taste yummy. I've started sewing more (in all my free time, lol) in order to keep a creative outlet for myself. So I think that's how I'm dealing with my inability to create tasty treats in the kitchen. Having to go through this really makes a person realize how much food tends to be the center of gatherings. Why does it always have to be about food? Can't you just have a game night/movie night with a few little snacks, have a visit with family without a meal being involved, meet a friend for something other than "lunch?" It's tough enough trying to figure out how to have people over and eat only what I can, but going out to eat is not even plausible for me.

I can't go anywhere without a plan. This kills me. I miss being spontaneous. Unfortunately, I know a lot of mommas go through this when they have a child with any type of food allergy or disability. I would love to be able to just grab the diaper bag and go, but people with "normal" children don't have to worry that there might be an hours worth of vomiting and pack tons of extra clothes and burp rags, or hours of screaming in pain, or that their child might accidentally chew on something that could have trace amounts of food proteins on it, or that someone might feed their child/kiss their child without washing their mouth out/let their child chew on a finger with lotion or residual food/etc.

Some may call me anal or over protective, but I know in my heart that I'm just keeping my son safe. It's sad that my social, food loving, spontaneous self has to suffer because of this, but I think of how things will eventually get easier as he grows older, and hopefully in 3-5 years, FPIES and all the challenges that come with it will be nothing but a memory. People live 80-100 years nowadays right? What I'm missing over these next 3-5 years will be well worth the rest of our lives being exciting!

What Is This You Speak Of?

From the FPIES Foundation homepage:

	"Food Protein-Induced Enterocolitis Syndrome is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.
FPIES symptoms can also include persistent reflux, abdominal pain and mucous and/or blood in stools. Multiple food exposures may occur before a reaction is seen. Delayed reactions are also common. Please note that each child is unique and your child may experience their own range and intensity of these symptoms. Please seek medical advice if your child is displaying any of these symptoms." That about sums it up right? WRONG! Each child is so different and each child reacts in their own unique ways. Some of my posts might be a bit "gross" to all you lovely readers, but it's a part of my daily life! Daniel's symptoms of reaction include: Reflux Vomiting Vomiting to Bile Stomach Pain Gas Pain with Pooping Diarrhea Blood in Stool Mucous in Stool Hives Diaper Rash Pin Prick Rashes on Chest, Neck, and Trunk Cradle Cap Sleeplessness/Restlessness He has blood and mucous in his stools on a daily basis, although I am trying to fix this by rotating foods through my diet in order to make sure his system doesn't get overloaded with tons of the same food protein. Yesterday morning, he vomited about every 10 minutes until it turned green/yellow and mucousy about an hour later. All I could do was hold him across my lap with a receiving blanket ready to catch the next vomit, and try to keep him distracted in between. People didn't see the dark side because I didn't feel that they needed to, but I guess writing this blog has changed that. People look at pictures of Daniel and say, "He looks so healthy and happy," and I wonder why they would think I would take pictures of him draped across my lap, crying and vomiting? Why would I want to freeze that moment forever? People look at Daniel and say, "He's such a big boy!" That's because he nurses every 2 hours, at least, and most of the time it's because he needs comfort from the rumbling in his guts. Here you can find an article titled "Empathy," written about reflux, that a mom at the Protein Intolerant Child Foundation tailored to fit FPIES and MFPI(Multiple Food Protein Intolerances). It explains most of my feelings over the past few months while we were in limbo. It's a good reminder of how much words can hurt and/or help. Now you've got the low down on what FPIES is and how Daniel's body reacts to food proteins through my breastmilk. His body, specifically T Cells, attack his stomach/intestines/colon like he's eaten poison, every time I eat one of his trigger foods. This is why I have had to eliminate so many things from my diet. I still don't know what foods are safe for him, and we still haven't reached a good baseline(no symptoms of reaction present) for me to work off of. That is my goal. Find baseline. If  you like to pray for specific things, pray for baseline for Daniel. I know that God can heal my son if He wants to, just like He could have saved Jesus from being crucified, but God's will isn't always what we WANT, although I've always found that it does provide what I NEED. What I need right now is baseline for Daniel so we can press forward and hopefully add more foods to my diet, and then start him on solids. I love my son more than I ever imagined possible, but it's a drop in the bucket compared to the love God feels for him. He doesn't want us to hurt or suffer, He wants us to be successful, and in order for us to be successful, we need to reach baseline.

Peace of Heart

Have you ever gotten  news that was not neccesarily "good" news, but felt a million pounds lighter after hearing it? Yesterday I got that news. When the doctor said, "FPIES," without me even mentioning it, I almost squealed with delight! You FPIES mommas might be wondering, "What the...?! Are you nuts?!" I think I already answered that question in my first post. You see, when you're in a constant state of limbo, with no support from a medical professional, and your kid doesn't LOOK sick, getting a concrete answer is like having the heavens open with a group of angels singing the hallelujah chorus and God's glory shining on you, warming your cheek (and heart for that matter) like the sun. Yesterday was a HUGE blessing. That's the way I am choosing to see this diagnosis. I know we'll have dark days filled with vomit, diarrhea, and crying, but now, I have an answer as to why. So with that, I will end with a prayer of thanksgiving!

Dear Father in heaven, I thank you for bringing me answers about Daniel, and for giving me peace in my heart about the answers. Please continue to guide us in this race you have marked out for us. You are a truly gracious God and I thank you for loving me and my family. I thank you for blessing me with an amazing son to care for, along with the resources and people neccesary! In Jesus name, Amen.