Carter was less than 24 hours old when he projectile vomited for the first time. He woke from a dead sleep and emptied the entire contents of his stomach all over himself and the side of his little hospital crib. It was curdled and not at all digested, although it had been hours since his bottle. I took a deep breath . . . we had seen this before. Our two older boys were both intolerant to milk and ended up on soy formula. I buzzed for the nurse and asked if they had any soy formula. The hospital didn’t have it readily available in the nursery, so she was off to find the doctor and see if they could get us some. We went home before they were able to get us any soy formula.
I continued giving him the cow’s milk formula in hopes that the nurse was right, and it was just a fluke one time thing. Looking at the situation now, through FPIES eyes, I have learned that there are no flukes. He continued to spit up after every bottle and was put on Zantac for reflux. He was constantly fussy and always in pain. I really thought it was the reflux . . . until he had his first bloody diaper. I was sure that the formula switch would fix everything.
He was three weeks old when we switched him to soy formula. And things went from bad to worse. The reflux worsened. He wouldn’t sleep, wouldn’t eat, wouldn’t do anything but scream. He threw up constantly. He looked like he was frightened all the time. We switched bottles and he was finally eating, but in pain the entire time. Just as I was beginning to wonder whether his body was rejecting the soy formula, we had our next bloody diaper. He was six weeks old when the pediatrician called to talk about our options. His recommendation: Alimentum, a hypoallergenic formula where the proteins are broken down. They are broken down so the body will have nothing to react to, he tells me. He also said that it was really expensive and didn’t taste good, so we might have problems getting him to take it at all. I cried. I cried for the suffering he was enduring, for the stress of the entire formula switching process, for the time it would take to notice a difference. Our pediatrician said to wait two weeks to see if it helped him. I will never be able to thank my husband enough for his reaction when I told him we had to switch formulas. He didn’t even hesitate. He told me we’d do whatever we had to do to keep Carter healthy and happy. That has been our motto ever since.
Once we switched Carter to the Alimentum, the difference was evident right away. He started eating better and sleeping better. He was a much happier baby. We were still battling reflux, trying to find the right medicine and the right dose to help him reach real comfort. I didn’t know it at the time, but the reflux was his body having minor reactions to the Alimentum. Again, the FPIES eyes have made it all clear now.
Even though he was doing much better, he was always in pain. There was never a full night of sleep for anyone in those first 6 months. Carter still vomited . . . all the time. There was never a night where I wasn’t awakened to him vomiting in his sleep or coughing and gagging as he threw up in his sleep. There were mornings where I would go into his room and see that he had thrown up in his sleep and never even woke up. Most nights I just prayed for morning to come. After every bottle, something always came back up, sometimes it was a mouthful and sometimes it was a full stomach emptying. It became our way of life, several clothes changes for both Carter and me everyday and blankets as burp cloths. Then our pediatrician suggested trying some rice cereal to help him keep his formula down.
We used Gerber’s rice cereal, which is the typical next step for all infants and recommended as the best first food. This is not the case in FPIES children. There are two things that are very wrong with the “logical” next step we took: Rice is a very common trigger in FPIES kids and Gerber is notorious for cross-contamination in their foods. Of course I knew neither of these things as I gave Carter his first helping of rice cereal. He got incredibly cranky and lethargic. It didn’t help his vomiting, just made it easier to clean up because it was thicker. It also made him horribly constipated. I assumed the crankiness was from the constipation. The FPIES flag still hadn’t gone off yet, but I knew something was wrong. I told the pediatrician, who seemed a little puzzled, but suggested we switch to oatmeal. At this point I started to do some research and found out about Gerber’s cross contamination issues with their rice cereal. So we switched brands to Happy Baby, which does not have any contamination issues. I tried their rice cereal and got the same results. At this point, we knew for sure that rice was a no go, so on we went to oatmeal. I used the Happy Baby oatmeal and Carter did great with that.
After the oatmeal success, we started introducing new foods, one at a time, a week apart. He seemed to be doing great with those. We also started giving him finger foods: crackers, pasta, puffs, teething cookies. It was the normal progression of foods.
Looking back on it now, he was never thriving, healthy and happy. I had no idea that he could be any different. He was leaps and bounds above what he had been on the other formulas and I thought this was his normal. The whole time he was having minor FPIES reactions, a build up was taking place in his body. Many of the foods we were consuming had trace amounts of soy in them. These trace amounts gave Carter a constant cold, over 5 months of running nose, cough, sneezing and watery eyes. The cough kept us up at night for so many nights. The runny nose would gag him in his sleep. Many nights, sleeping upright on our chest was the only way any of us got sleep. I was told that he was too young to have seasonal allergies and since his body wasn’t presenting signs of a typical food allergic reaction, there was nothing we could do. He was even diagnosed at one point with RSV and given inhalers because he was struggling to breath. We thought he had croup because his cough would worsen at night. The nights that his cough worsened, we directly related to what he had eaten during the day. I was starting to think that maybe we just had a sickly baby. His system was just sensitive to anything he was exposed. I still hadn’t linked it to foods though.
When we reached about 10 months old, the pediatrician suggested that we try to see if his body could now handle dairy. We were to start with yogurt and see how he did. I was so hopeful that he had outgrown his culprit foods. Carter was even tested by an allergist and he showed negative to dairy and soy. We gave him yogurt, and waited. He got cranky. And whiny. And incredibly constipated. “His body just needs time to adjust. Keep going”. Two weeks later and no bloody diapers, so we tried milk. He drank it like a champ! Within two hours he had a death grip on my leg. He was whining non-stop. There was nothing I could do to console him. I thought maybe it was teething. We gave him some more and waited. Then the diapers came. Mucousy, runny, bloody. Scary.
Milk was a no go again,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.
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.
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 13 to 14 poop diapers a day. All of them were mucousy diarrhea that instantly burned his skin. 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.
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. We have mapped out much of Carter’s treatment plan on our own. Right now, we are focused on today, because with FPIES it is how we survive.
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Carters FPIES Maze
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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation