I suppose, in hindsight, that I don’t ever remember a time that my baby was healthy. The day that Bryce was born, he immediately began spitting up breast milk. After entering the NICU, we had a gastrointestinal doctor tell us that they were running tests, believing his intestines to be ‘backward.’ Two days later we were released to take our baby home, with a prescription for Prevacid and a diagnosis of acid reflux. After time his reflux subsided, only to be replaced by the worst case of colic that I had ever come across.
My husband and I had a two and a half year old boy. James had been a wonderful, calm and happy baby. We felt like we had this parenting thing down therefore really didn’t even consider ‘preparing’ for Bryce, we got pregnant, got excited and we felt it would come naturally yet again. Jump forward 9 plus months and here we are taking turns at 3am sitting in the backyard just to get a moment of quiet before our heads exploded. Strangely enough, our screaming little baby never seemed to bother his older brother, James still slept all through the night, perfect baby that he was. Yet here were my husband and I on the verge of losing our minds and nothing seemed to make any difference at all. We swaddled, did stomach massage, tried every colic water and supplement believed to help and it never ceased.
Months of sleepless nights went by and Bryce seemed to improve. As most parents, we believed we got past it! Colic is over, yeah! Boy were we wrong. As we approached year one, we realized that Bryce would only have bowel movements every few days. These every few days quickly moved to once a week, and then to every ten days. Just shy of his first birthday I received a frantic call at work from my husband. He had been feeding our older son lunch and offered Bryce a bite of James’ peanut butter sandwich. Immediately he began to swell, he developed red and white whelps all over his face and began to have trouble breathing. He was rushed to the urgent care clinic around the corner and administered epinephrine, at which point his symptoms slowly started to subside.
The next week as we sat in the pediatric allergist’s office, we again believed our troubles were coming to an end. Food allergies, of course, that was the problem! Now he would get better! Wrong yet again, his stomach troubles would continue on. We were seen by two different pediatric allergists, a pediatric gastroenterologist and numerous other specialists. By the age of two my baby had experienced three colonoscopies and too many blood samples to count. In the midst of his stomach issues he began to develop unbearable seasonal allergies. His face was puffy; eyes swollen to the point of shut and was not taken outside most days. We knew something was off, but just couldn’t figure out what it was or the help to find it.
As my oldest started first grade, his teacher mentioned to me that her husband suffered from a disease called Celiac. My sister-in-law, a registered nurse, came to me with this same issue the same week. I did my online reading, called the GI doctor and said get us in, I think I have found it! Another colonoscopy down and no luck, he was totally negative. We continued the brutal cycle. He would be a normal happy kid for a few days. Then as time wore on you would start to notice his stomach beginning to descend. It would look and feel like a balloon on the verge of explosion, tight, hard to the touch and very bloated. Misery would set in and two hopeless and heartbreaking days later he would manage to have a bowel movement. Over again we would start, immediately he would look like a sickly child with a concave stomach that hadn’t eaten in weeks.
At this point we were beginning to give up hope. I started to refuse the fiber supplements and recommended enemas; they were extremely painful and never had any effect whatsoever on his ability to use the restroom. Everything we did seemed to simply compound the problem. Bryce would sit on the toilet for literally hours on end. My poor three year old, crying and refusing to get up because he knew he needed to go to the bathroom, but his body would not allow a bowel movement. I began to take to the internet, refusing to give up. I would not go on watching my child suffer this way. We began to be told by doctors that at his age and him potty training that maybe he didn’t like to use the restroom so he was just ‘holding it in.’ I was furious, there was no way that my baby was making himself this sick, and how dare someone insist so.
After several appointments of mediocre service, I decided it was time for a new pediatric allergist. If nothing else, I could fix the runny nose and swollen eyes for him. At his new patient appointment we scheduled allergy testing. I informed the new doctor that I knew his allergies were to peanuts, tree nuts and bananas. She suggested that we do patch testing to more accurately determine his allergies, something I had never heard of before. Noting how thorough she was with the allergies, I began to bring up his stomach issues. I noted the number of colonoscopies, blood and stool samples, biopsies and scans that we had done. At this point I was used to rattling it all off and the doctor looking at me like I was that crazy mom dreaming up some illness for her child to have. She seemed to pay close attention to me and as the appointment ended, I was shocked to find out that not only did she not think that I was crazy, but she thought she might have an idea of the cause.
A week later, we went back to have his skin patches removed (what a miserable test that is!) And lo and behold, he came up positive to sesame seed, wheat, rice, rye and corn in addition to his current allergies. Back to the GI doctor we went. We were again told that the only way to diagnose the issue would be a colonoscopy. Deciding that we had faith in the allergist, we went for it. You can imagine our shock several days later I called in for results and was told that my son did in fact suffer from Eosinophilic Colitis. A rare incurable disorder of the intestines in which allergens entered into the system irritate the white blood cells in the colon causing them to attack the colon itself. His colon was severely swollen, but no permanent damage had been caused.
We have since done rounds of medicine to help with the condition of his colon. At this time he is off of the medication and avoiding all the food allergens. We are hoping that one day he will get his bi-annual allergy test and have dropped off one or more of these foods. But, at this point I am happy to have a healthy four year old who is finally putting on weight. Information on the disorder and recipes for such food restrictions are hard to come by, but we are making it work. Bryce is a very lucky boy, while he is only able to eat meat, fruits and vegetables, there are many children out there who are on a diet of a handful of foods. Many that even that require a feeding tube to stay alive.
No matter how many bad looks or annoyed doctors I dealt with, I am so happy that I decided to press on. To stand up for Bryce and say no, there is something wrong and there has to be something we can do. Always remember that there is someone out there that can and will help you, you just have to walk in the right door and make yourself tell that same story over again. Be your child’s advocate, you’re the best one they’ve got, and it can change their life. It did for my baby. J
