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.