When we were searching for answers with Wyatt, and just weren’t able to get them this summer, I posted a plea for help in our FPIES support group. trying to find info on a Doctor I was desperately trying to get Wyatt into. Bryce’s mom Maureen messaged me and told me who to call, and what to say so that I could get in as soon as possible to the doctor. I am so grateful that she did, because that’s how we ended up in Denver, and seeing Dr. Atkins.
I’d like you to meet Bryce:
Over the past 22 months I have learned to accept the things I cannot change, to have courage to change the things I can, and the wisdom to know the difference. This is the story of my beautiful son; Bryce’s journey of hope and perseverance. He was born Feb. 24th, 2012, via C-section, but that was the only thing that was normal from that moment on. He was the most beautiful baby, and even smiled in his newborn baby pictures. He is my second child. Right away he wouldn’t latch correctly when nursing and was constantly gasping for breath when feeding. He was ridden with pain from day one.
We brought him home and breastfeeding was agonizing for both of us. He wasn’t taking anything in, was crying all the time, arching his back, and constantly wanting to be held or in his swing. We decided to try formula, and after the first bottle of formula we noticed something was seriously wrong. He screamed for hours, and nothing would comfort him, he broke out in a rash all over his body, and had blood in his stool. I rushed to him to our pediatrician whose immediate diagnosis was that of lactose intolerance; she switched him to soy formula, and gave him gas drops.
The first six weeks of his life were filled with this gut wrenching screaming all day long, and I felt so lost and hopeless to help my son. I also took him to an Ear Nose and Throat specialist because when he would breastfeed he would gasp for air, the doctor looked at me like I was nuts. We later found out that when he has dairy he wheezes almost like an asthmatic attack. I started to notice that overtime when I gave him pumped milk he would scream endlessly, so I stopped giving him breast milk and stuck with the soy formula. Then I went to the store and bought him Dr. Brown’s bottles, gave him only formula, and gas drops and for the first time ever he slept for two hours straight. I thought our problems were starting to subside, but little did I know our journey was really just beginning. He continued to never really sleep and when he did he slept in a swing most of the night, and then slept in our bed because we were so sleep deprived we would do anything to sleep longer than two hours at a time.
I took an extended maternity leave because I couldn’t leave him with anybody. We then decided to move our family to be closer to my husband’s family, and we could afford to have my husband stay home there for the year, so we moved to a remote town in the Western slope of Colorado for a year. We thought that if we introduced food he would sleep longer and it would help his tummy, so at four months we started baby food, and the situation became dire. Not only would he not sleep, he would scream all day; it was excruciating. Then he would have explosive diarrhea on top of it. Some nights we would have to change his sheets, and bathe him three to four times in the middle of the night.
This went on for months, and he would have days and nights that were better than others, but then other things started to happen. He had these huge bags under his eyes, and developed a rash all around his mouth. Desperate I sought advice from my teammate at the time whose child had celiac disease, and took him off all foods at ten months and started with just boiled carrots!! Oh my, he broke out in a rash all over his body, projectile vomited and had diarrhea for two days. This is when I decided we needed to see an allergist because I was certain my son was allergic to carrots.
The closest allergist was in Glenwood Springs, which is an hour and a half one way from our remote location. My husband took him in, and the doctor was perplexed with Bryce, and was convinced there was NO WAY a baby can be allergic to carrots, but sure enough he had an IGE reaction to it. The allergist although had no idea what was going on at least didn’t think we were crazy. I raced home from work that day, and looked at all the baby food that we had been feeding Bryce, and my heart-shattered right there in the kitchen. EVERY baby food we had, the first ingredient was carrot. I was making my baby sick, the thought and feeling that went with that was horrific, and that feeling has still never left me. The day we took him off all baby food he sleep through the night! It was a miracle. The most devastating part of this was that when Bryce was having a good day he was the sweetest, happy little guy, and he was meeting all his developmental milestones.
At this point Bryce was almost one, was still sick everyday (dirty diaper every hour), and we still had no idea what was going on with him. I started to feed him one food at a time, and began my own journaling and food trials. During this time our lives began to unravel. We were in a small town, didn’t know very many people, I went to work but was living in my own personal hell, and my husband and I argued everyday about Bryce. That year we had private insurance for Bryce so we were financially drowning with doctor’s visits, blood word, etc.. and I would still drive Bryce down to our pediatrician in Denver because I didn’t trust anybody else. Even our trusted pediatrician couldn’t make heads or tails of what was going on and all the random symptoms. Then there was the no sleeping for a year; I can now attest that sleep deprivation will start to change your personality.
When he turned one the allergist we were seeing decided he should start soymilk because all of his allergy blood work had come back negative, and since he had been on soy formula it made logical sense. It was a disaster. I can’t even describe with words the torment that took place. My husband and I had an epic argument over it because he sided with the doctors to continue to give it to him, and I said over my dead body is our son going to be drinking soy milk ever again. It didn’t make sense but I knew in my heart he couldn’t drink it. I loaded up my children in the car, and headed toward Denver in the night to see our pediatrician in the morning. My husband and I didn’t speak the whole five-hour car ride!!
We showed up at the pediatrician the next morning, and I was sobbing, and begging for help for my son. The pain as a mother to see your baby sick everyday takes a beating on your heart over time, and he didn’t choose to be in this world, and he was in so much pain, and I felt hopeless. She said, “Maureen I can’t explain it but if you say that is what happened and is happening I believe you.” The words still resonate deeply in my heart. She said: “my walking buddy is the allergist across the hall; I am going to text her and see if she will see you today, since we had just driven five hours down the mountain.” We waited almost two hours with my one and two year old in the office. She finally saw us, and I started our story from the beginning, and she said, “Maureen your child has FPIES.” This moment was the turning point in Bryce’s life and for our whole family. I hugged her, cried, laughed, every emotion went through my body. We had an answer; she even typed it up and printed it for me. I was relieved, although FPIES is not anything you ever want your child to have; at least we knew what we were up against.
When we got home I found the FPIES foundation page, and our road to recovery started. Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. I began to say this quote in my mind; “You gain strength, courage, and confidence by every experience in which you look fear in the face.” After reading the description of FPIES I became truly fearful. The only way to know what your child is allergic to is to feed it to him. It brought me back to the moment in my kitchen when my heart shattered all over the floor. From that moment on every time I fed him I could cause him to go into shock, vomit, or be sick with diarrhea for days. This is also when I started seeking out help and found the Clubhouse, and joined Facebook. For months I just read posts, and tried new things suggested by mothers. I was also able to start the healing process with Bryce, and was able to start a list of triggers, but I was still lost and hopeless.
As time went on I eliminated so many foods from his diet, but he got better everyday, so I continued on. We then decided we couldn’t travel five hours one way to see an allergist every month in Denver. It also broke my heart how our lives had changed so drastically by Bryce’s diet, and we needed to take action to better the situation.
After just one year in the tiny town, we moved back to our house in Aurora, CO to be closer to doctors to help Bryce. We moved home and my search began for a doctor to help Bryce, who specialized in cases like his. I called about research projects, went through child find, tri-county health, and then I found a number for the allergy wing at Children’s and left a message for a nurse begging for help. At this point he was down to four or five foods, and still having chronic reactions, I was beside myself.
This is when God entered our lives through a divine intervention, and a nurse named Kathy called me back an hour later, and said, “Let’s talk about Bryce and his FPIES.” I burst into tears, and said, “You know what it is?” She said of course I work for Dr. Atkins; he has been dealing with patients with FPIES for many years. It also turns out that the allergist that diagnosed Bryce was one of Dr. Atkin’s interns. For the first time ever I felt hopeful that Bryce might have a normal childhood. She said to eliminate all grains, and got us in to see Dr. Atkin’s within four weeks, truly a blessing. We eliminated all grains and then we were down to only a few foods and formula.
Bryce was also a moving toddler now, and wanting to eat everything, and we barely left the house, or went to play dates because his temper tantrums over food were so painful for me to watch. We ate in secret, had to teach my older daughter not to share with Bryce. It was terrible. He had so many triggers; it became easier to tell people what he can eat than what he can’t. I also only found myself hanging around friends that knew about Bryce’s condition. I hated having to explain myself over and over to new people. When you have a child with FPIES a trip to the grocery store is not normal, and you have to read every single ingredient, because one slip up can cause your child excrutiating stomach pain or worse a trip to the emergency room. There is no time when you can just pick something up while you are out; you always have to pack your own food and snacks. We have been seeing Dr. Atkin’s for four months now and the change in our son is remarkable. We do whatever he tells us, and in the past month he has had four huge food passes.
At 22 months he had his first lollipop, and now can eat foods that other children can have. We even have a restaurant that we all can eat at now. We don’t have to live in such a bubble now, but I can never ever forget how delicate he is, and how we cannot slip up for one second. I still don’t trust very many people to feed him, and am really cautious about going places with him, and never let him out of my sight. I truly believe he is on the mend, and every food pass is celebrated, and nothing is taken for granted anymore. I cried two months ago when he had his first potato chip. Everything in life revolves around food, so it is easy to take for granted a potato chip. I have spent many hours hand cooking food so my son can have something that resembles what other children his age are eating, but it is always worth it to hear him say, “Mama yummy!”
Over the past 22 months, I have learned to accept the things I cannot change, I now have the courage to change the things I can and the wisdom to know the difference. Bryce is a beautiful 22 month old, that goes to school every day, and has his whole life ahead of him, and it will be a great one because he has an incredible support system of people that love and want him to succeed. This is Bryce’s story of hope and perseverance.
Disclaimer: The names of the Doctors used in this post were used after verbal approval.