Milk was out of the equation, so we tried soy. I gave him 4 ounces of soy milk at lunch. Then I gave him another 3ounces before his nap at 3 pm. He drank it so well. No problem with the flavor at all. He went right to sleep. An hour into his nap, he wakes up crying. He’d thrown up. I got him up and put him on the floor so I could change the bed. As I was changing the sheets, I looked down and knew something wasn’t right. His little body was hunched over on all fours and his head was hanging down against the ground. I bent down to pick him up and he had thrown up on the floor. His body was limp and his eyes were so sad. I remember his eyes most. They are burned into my memory. I looked into his eyes and saw a terrified little boy who knew something was not right. The vomiting continued. Every couple of minutes he threw up. There was no energy in his body. In between vomiting, he just laid against me and cried.
It was his pain cry, but it was so much worse than I had heard it before. That’s another part of FPIES that is often forgotten by the medical community. Their bodies are in extreme pain during a reaction. It is not just the outward symptoms, but the pain they feel deep in their intestinal tract. It is a pain we cannot help or fix. It broke me. I have never felt so helpless.
As the vomiting progressed, he had completely emptied his stomach contents. He was lethargic. His eyes closed. And I could not get them to open. He would not hold his head up. The only time he moved was to throw up bile and as his eyelids flickered, I saw that his eyes had rolled back in his head. He was officially in shock.
All this time, I was on the phone trying to get help for my littlest one. I called the advice nurse at the hospital. I was put on hold and waited and waited. I finally got to talk to a nurse who was sympathetic, but told me it was a stomach bug. The whole time I was on the phone, I had a nagging feeling that I needed to hang up the phone and call 911. I knew Carter needed help. After I got off the phone with the nurse, I held him and waited, waited for him to come back. After four hours of vomiting, he slowly came around. He drank 4 ounces of formula and slept. He slept all night and much of the next morning. I know now that his body entered into shock and I should have taken him to the ER to have an IV started to replace the fluids. It was another 24 hours before he had a wet diaper. He had numerous mucous and blood-filled diapers and a horrible diaper rash that lasted for several weeks. The primary reaction may have only lasted 6 hours, but the secondary issues lasted for over two weeks. That’s when I realized that for the last 11 months, we had been roaming around in this maze with the completely wrong map. Instead of finding a way through his discomfort, we were inadvertently making it worse and getting more lost all the time.
As scary as his reaction was, I also know that many FPIES kids suffer far worse than Carter. I have talked to a mom whose son was in the hospital for several days and required numerous IV bags in rehydrate him. I believe this reaction triggered something in his body. His body went on high alert to all foods. He stopped digesting foods. Everything went through him and came out whole and undigested. He began to loose weight rapidly. At one point he fell off the growth chart all together. I removed all soy from his diet even in trace amounts. I started researching his symptoms and found FPIES. His soy reaction was a classic reaction. And then I met some other amazing moms who have dealt with FPIES and were able to help me start to create a little more of this map. I am forever grateful to them for all their help.
When I removed the soy completely from his diet, his “cold” went away. That’s when things really started to make sense. His refusal to eat squash, green beans and peas were not just stubbornness. They were foods that cause reactions. Although the cold went away, the diapers continued to get worse. At Carter’s worst, we were at 7 to 8 poop diapers a day. All of them were mucousy diarrhea that instantly burned his skin. We carried several changes of clothes for each of us in the car because most of the time, the poop was so bad it exploded out the top or the sides. Our world was covered in poo.
We had to remove everything from his diet except the formula to find the cause. We reintroduced each food and waited a week to see if there was a reaction. The biggest blow was gluten. When we had to remove his favorite snack from his diet, veggie straws, we all took it hard.
Carter has undergone extensive allergy testing, all of which came back negative. His diapers have been analyzed, his blood has been studied. All of these have come back negative for any obvious issues. We even had an endoscopy done to rule out Celiac disease, among other things. Every turn has been met with another wall or another dead end. FPIES is not something that doctors readily understand or even accept. We have mapped out much of Carter’s treatment plan on our own. I was fortunate enough to find an allergist who has heard of FPIES and she’s only four hours away. She has been a great help in deciding what foods to trial next and how to go about introducing them. There is so much more left to tell, but at least now we are relatively caught up. I will occasionally post a “Flashback” of other events and encounters in this maze, but now I can start to focus on Today, because with FPIES it’s the only way to survive.
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