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Owen was born on April 29th, 2006, at 9:25 a.m., weighing 7 lbs. 13 oz. and at 20 inches long. He already scared me in the hospital when he spit up and started choking. The nurses said that was normal since he probably swallowed some amniotic fluid. We came home, and everything seemed to be going fine. He was just spitting up a lot, but the doctors said as long as he was doing okay and not crying, it was okay--just a pain for me with all the extra laundry. Well, that all changed when Owen was about 6 weeks old. He would only nurse for a couple of seconds, pull away from the breast, and arch his back and scream. This went on and on during the whole feed. He was also getting more and more fussy day and night. It was the weekend, and things got worse, and he was throwing up so much. By Monday, he refused to eat, and anything that I got in him came out again within minutes. My friend was there and said that it wasn't normal, and it had been going on for too long already, so she took us to the ER.

On the way there, Owen fell asleep in the carseat, and I nursed him when we got to the hospital, and he did fine at that feeding. They called us in and had me nurse him again, and he did fine again but they said it seems like something is bothering him since he was squirming around in my arms, just uncomfortable. To my surprise, he didn't throw up once while we were there, so they thought he might have caught a stomach bug. We were sent home with Pedialyte and a follow-up appointment with the pediatrician for the next morning. That night, he slept through the night which was amazing, as usually he would wake up every 20-30 minutes and scream.

The next day, we went to the pediatrician and everything seemed fine. He also thought it probably was a stomach bug. Little did I know what was ahead of me the next couple of days. We got home from the doctor and I put Owen down for a nap. Within 20 minutes he was up screaming in pain and throwing up again. I couldn't believe this was happening again, so I made a new appointment with a different pediatrician and we got seen the very next day. The doctor seemed nice and was listening to all that had been going on with Owen in the past couple of days, and she said it sounds like he has Acid Reflux. She prescribed him Reglan, but the pharmacy didnt have it, so she went ahead and prescribed him something else. I didn't find out until we got home that what she had given us was gas relief drops. I was so upset about this and couldn't believe it. I called my friend since I knew her daughters both had reflux and she suggested to elevate his bed and to see how he was doing and than to take him back to a pediatrician the next day to get some meds that would help him. He slept a lot better once I elevated his bed and was also not as restless in his sleep. I took him to see a different pediatrician at the hospital and she started him on Zantac and Reglan. At first we saw an improvement, but then he was back to screaming and crying most of the day. He was gaining weight and we had to adjust the Zantac doses quite a few times before he was comfortable. At around 5 months of age, he was getting worse again and I took him back to the pediatrician. She said she couldn't do anything since he was already on the highest dose of Zantac. She also wouldn't prescribe him a PPI, because she wasn't comfortable with that. I was devastated and didn't want to do this anymore. I couldn't handle seeing my baby in pain. At Owens 6 month check-up, we saw a new pediatrician (we are in the military overseas, so doctors change quite often). She was awesome and listened to his story and was concerned that he was still choking and gagging so much. Right away, she put him on Prilosec/Losec. This was our lifesaver and I couldn't believe what a difference it made.

Once we started with solids a whole new issue started to appear. He seemed to tolerate next to nothing. He would break out in rashes, scream for hours, wake up several times at night, have mucous and undigested foods in his stool, and the list goes on. I started a food log to see if we could figure out which foods were bothering him. I was still breastfeeding, and so I had to do 2 separate logs, one for him and one for me. After a couple of weeks, we took it back to his doctor and she said he seems to react to the dairy that I eat. So I went on a dairy free diet and he wasn't spitting up as much anymore and was happier. It didn't last long, though. He kept breaking out in rashes, and his eczema was getting to the point that it was infected and bleeding. At 13 months, we got a referral to a German hospital to get him tested for several things. By that time he was diagnosed with FTT, since he hadn't been gaining weight well at all for the last couple of months. He also had a lot of undigested food in his stool and was just a big mess. They tested him for food allergies and for CF, and checked his stools. They were supposed to test him for Celiac Disease, but never did. A couple of weeks before the tests were done, we put him on a regular diet, only excluding dairy and soy. He was doing horrible and you could tell he wasn't feeling well at all. After all the tests were over, we put him back on his limited diet, which consisted of pears, oatmeal and carrots. Even on the limited diet, his skin still didn't improve by much. His eczema was very enflamed as well, and he still woke up frequently during the night in pain. By that time, he also constantly went back and forth between loose mucous-filled stools and constipation, and the smell was just plain gross. We live in Germany right now, and the only thing I can compare it to is when the farmers spray pig feces over the fields.

By the end of July, I had enough and took him to an alternative doctor to see if we might find some answers there. She did some allergy testing on him and we found out that he didn't tolerate wheat, oatmeal, and also a lot of other grains. She said we could try spelt and see how he did with it. Within 2 days of eating cookies that were made from spelt, he was pooping water and had a horrible diaper rash. So I took him off that and decided that it was time to go gluten-free and see how he would do. Within a couple of days on the diet, he was improving and much happier. A couple of weeks later, he was rash-free and sleeping through the night most of the days. We slowly started introducing new foods in his diet with great success and he was enjoying it. Today Owen is almost 19 months old and a mostly happy toddler, pain-free, and still taking his Prilosec. We do suspect that he has Celiac Disease, as we had such great success on the gluten-free diet. When he gets gluten, within hours his mood changes from happy to angry and upset. He will wake several times at night with a stomach ache and has loose mucous-filled stools again. Luckily his reactions usually only last for a day and he is back to happy again the next day. At this time, we are not planning on doing any more tests on Owen. His pediatrician completely agrees with us. Maybe in a couple of years we will put him back on a gluten-filled diet and have him scoped to get the Celiac Disease diagnosed, but right now we are enjoying his toddlerhood and will worry about things later.

Written by: Melanie, Owen's Mom

Read more about Children's Stories:
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