The Road Ahead (11/29/11)

I’m realizing that I’ve sub-conciously been in a state of denial about Zachary’s tummy problems. We recently had a pretty traumatic experience that put into perspective how real all of this is. I had finally found a diet that seemed to be working. We are calling this diet “The Baseline”. We got to a point of Zachary being pain free for about a week. He even slept through the night a few nights which says a lot about how well things were going for us. We uncovered the happy and wonderful boy that lie beneath all of this pain. So, we started him on solids, and, at the doctor’s orders, started with vegetables (my diet remained unchanged so that we could gage his reaction to the specific food he was trying). Green beans were our first experiment and they seemed to be going well. So a week and half of green beans and we moved on to sweet potatoes. We decided this would be a special new food we would try on Thanksgiving and, since things seemed to be going so well for us, I didn’t think twice about it. We were very excited for Zachary to get a new taste of food and to see if he liked it… he loved it. All went really well, until about 2 hours following ingestion.
Zachary’s reaction was pretty scary for Nathaniel and I. Zachary started throwing up right around the 2 hour post-ingestion mark. For the parents that have children who “spit-up”, that is no relation to what we experienced with Zachary’s “throw-up”. He then proceeded to scream all through the night and go two days without a poopy diaper which means the food that was hurting him so badly was stuck in his system. He was in intense pain, and 5 days later, still seems to be hurting pretty badly.
Shocker Alert: I got online and did some research.
Nathaniel thinks I research too much and get myself worked up over nothing, so I had tried not to spend a lot of time or energy researching FPIES or the GI Disorder before a diagnosis. Looking back, I wish I would have. It appears that green beans and sweet potatoes are two of the most common “don’t eat foods” for children with FPIES. Had I known that, those two would have been the last foods we tried.
Well, during this research, I can say I’m starting to become more certain that Zachary has FPIES. Which is good compared to the GI Disorder because, it will, eventually, go away. Originally we were told FPIES would last 6-12 months. The more I read, it’s looking like this will last 2-4 years. I am also learning that Zachary has a pretty extreme case of FPIES. There are very few children with FPIES who actually react through foods in breast milk (less than 5% from what I can find). His reaction was obviously far more severe when he ingested the food himself. The most discouraging thing about FPIES is that there is no treatment for it. There is no test to say that he has it, no test to tell us which foods he will react to, and nothing to make it go away. After having a reaction to a food there is no way to make him feel better. There is no medicine, not even Tylenol, that will help with the pain. In fact, Tylenol can even trigger a reaction. So, we just have to wait it out for days or weeks until the food is out of his system.
The Mouws versus FPIES:
What FPIES is: An intolerance to the protein in certain foods. Kids with FPIES all react to different foods and ANY food can cause a reaction. Not a single food is sure to be safe. If a food causes a reaction, it is called a “trigger food”, is placed on the “Not-Safe” list and should be avoided for 18 months before trying to re-introduce it. The body treats a “trigger food” like a foreign invader – it’s initial response is to reject it (severe vomiting). It’s excruciating for the body to digest, somewhat comparable to a normal person trying to digest poison – only the food itself isn’t deadly.
How serious FPIES is: Well, it all depends on the foods that you eat and how much of them you eat as well as the severity of your case. Zachary had about a quarter of a small jar of sweet potatoes and has reacted for days. Had I given him a whole jar, he could have vomited to the point of dehydration and gone into shock. That would have put us in the ER hooked up to IV’s. Now that we’re aware of the condition, we can ensure a slow and steady introduction to new foods. We’ll try less than an ounce a day of a new food for 2 weeks before considering putting it on the “safe” list. The older he gets the harder it will be for us to monitor every bite that goes into his mouth. We’ll have to be selective on who cares for him and make sure we pack all of his meals and keep a list with us at all times of what he can and can’t eat. No crackers in Sunday School, no goody bags at birthday parties no candy at Halloween… the list goes on.
What are the odds: There are less than 200 children diagnosed with FPIES in the US. There are hundreds more who have it but because of the lack of knowledge and testing, it can take months to get a diagnosis.
So, after this weekend of research, I’m feeling a little defeated. I’m learning that we’ve got a long road ahead of us and that this disease is going to severely impact all of our lives for the years ahead.
How we are holding up: Some days are better than others. Emotionally, it’s hard to function with a child who screams all day long. It’s overwhelming to try and leave the house after not sleeping for days at a time. It’s exhausting to not know what to do day-in and day-out. I spend Zachary’s naps trying to stay on top of devotions, housework, e-mails, blogging, and preparing for the days that I work and will be gone all day. You wonder why I don’t nap? It’s hard to wind down and fall asleep in the one-hour that he’s sleeping for. It’s also the only time that I get to eat a meal, do laundry, have quiet time, or shower. We are holding up, but this is easily the hardest thing either of us have ever gone through.
How God is blessing us through FPIES: There are three MAJOR blessings we are relishing in right now.
The first one is so obvious that we overlooked it. The fact that this disease is something we just have to “live with” is God’s perfect way of forcing us into solely depending on Him. If there was a test or a treatment we would be so focused on getting Zachary to doctor’s appointments and which doctor’s we were seeing and waiting for him to get better, that we would be losing sight of God’s ultimate healing power. At 2 am, when Zachary’s been screaming for 7 hours straight, the ONLY thing that we can do is pray. No doctor or treatment or medicine can help us. We can only look to God. We have no idea what foods he will be able to eat and how long it will be before he grows out of this. We are completely dependent on God to get us through this time. There are a million diseases out there that Zachary could suffer from, God chose one that puts us at His mercy… completely.
The second blessing is something that many of you reading this can’t even begin to understand. Last weekend, during my research, I stumbled across a blog from a mother who’s son just recently outgrew FPIES. Her blog documents their diagnosis and entire journey over the course of 2 years with FPIES. In her blog, she posts her e-mail address and asks that other moms walking through this e-mail her if they have questions or need support. I am crying as I write this blessing out for you all to see because you can’t possibly fathom the loneliness I experience with not knowing anyone who’s ever faced this. To find Meredith (the blogger) and read what she went through (the exact same things that we are going through now) and know that I am not alone is infinitely encouraging. I e-mailed her Friday and within an hour I had a response. Since Friday (4 days ago) we’ve exchanged over a dozen e-mails. Her words are worth more than gold to me right now. I often wonder if it’s God on the other end of the e-mail comforting me through the loneliness and encouraging me to keep going. She also has cried, yelled, and bawled so many times. She has carried the guilt of putting her child through pain and has gone weeks with no sleep. It’s also interesting how perfectly timed her e-mails are. On Saturday I was screaming in frustration and trying to put into words to my husband how hopeless this all feels, less than 30 minutes later I found an e-mail from Meredith that said “You’ve got a lot of work ahead of you, but don’t worry, it is manageable. It just doesn’t feel like it when your child is screaming all day long”. Just for her to tell me that we can handle it means the world to me. She is my angel.
And the third blessing is you. The readers of this blog. The supporters of this journey. The prayer warriors. Our blog is up to over 150 readers per post. ONE HUNDRED AND FIFTY!! Can that many people possibly care about us enough to follow our story? God is good. So so good. We are rich in love.
Where we go from here: As Meredith said, we’ve got a lot of work ahead of us. There will be many more “episodes” during the next few years. Zachary is going to go through pain. My plan is to help him live as normal of a life as possible until he outgrows this. I’m determined to find recipes that he can have so that we don’t have to deprive him too much. I’m journaling every food we try and every reaction to it. But, I’m going cry. I’m going cry a lot. At Zachary’s first birthday party, when he can’t have cake, I might lose it. I’m humbly admitting that I’m not strong enough for this, I’m not confident at all in what we’re doing, and I’m overwhelmed with guilt for not knowing sooner how much pain my son was in. I pray every night that God can take this pain away from Zachary and give it to me. I don’t want my child to suffer. But I’m reminded of God watching his son die on a cross and know that He too, has felt this burden. I’m going to grow closer to God through this and my dependance on Him is going to be challenged in new ways every day. I’m going to keep blogging. Meredith has inspired me to put our story out there in hopes that we can possibly provide another family with the support and encouragement that she’s provided us with. I’m making my blog public and I’m waiting for the opportunity to use this journey to further God’s kingdom.
I’m no longer in denial about the severity of the situation, I’m terrified about it. The fact that this disease can kill Zachary if we don’t watch what he eats carefully and don’t monitor his responses to new foods is mind-numbing. But God is carrying us right now. We see him all around us and are covered in His grace, enabled by His love, driven by His passion, and living in His mercy.