After a scary week in the hospital, we brought our miracle baby home. From day one, he was a screamer. He screamed all.the.time. You may think that I am exaggerating here, but I can promise you I am not. We rocked him, we swung him, and he spent hours in front of the dryer in a vibrating swing because it was the only thing that helped calm him even a little bit. I would wear him all day and rock and swing and bounce constantly to help him settle. If I did the dishes, I would put him in the bouncer and bounce with one leg as I did the dishes so that he would just cry instead of scream until he passed out. When I tell you that he never slept, I mean NEVER.
The doctor told me that he was colicky, and to give him gas drops and rub his tummy. He would projectile vomit everything that went into his mouth. I was used to that, because his sister did that too, so I didn’t think anything of it. When he would fall asleep, it was propped on my shoulder in a certain way, and he would moan and scream out in his sleep, if I laid him flat he would vomit and scream.
When he was 3 weeks old, he puked so much he was grey and lethargic and I knew something was wrong. I rushed him to the ER, and they told me that he had the flu. When I told them that he hadn’t pooped for a week, they did an x ray to see if he had pyloric stenosis, which he didn’t. They told me his body was just trying to figure itself out and he would be ok. They ran an IV, and did a feeding challenge in the hospital, and an hour later, Wyatt puked all over the nurse, but they still told me he had the flu.
When I met with our amazing Pediatrician for a follow up after Wyatt’s ER visit, he told me that he felt like Wyatt’s symptoms were not the flu, but a dairy, soy, and protein allergy. He gave us samples of 3 different formulas to try so we would know for sure. The first one was a gentle formula to simply rule out just a harsh regular formula, and he had no change in symptoms; the second was a soy based formula to rule out just a milk allergy, but not a soy allergy. We were staying at a friend’s house for the weekend when we tried that one and he puked all over their couch, and had the weirdest pale grey poop. He screamed all night long, and wouldn’t let up, and I couldn’t even begin to comfort him. I thought for sure they would kick us out of their house. The last formula was a hydrolyzed formula, and by the second day, it was like I had a whole different baby. It was night and day from the Wyatt I was used too. He was still fussy most of the day, and he still screamed a lot, but he wasn’t puking like before, just more spitting up, and he slept a little easier. We decided to start him on acid reflux medicine, because it was very apparent that he was struggling from some major GERD as well. We hoped that the combo would help.
Wyatt was still failing to thrive, but his weight hit a plateau instead of rapidly dropping, and we had hope that he would do better. We were encouraged to try rice and oat cereal and add oil to his feedings so that he could gain weight. As soon as we tried them, he was projectile vomiting even stronger, couldn’t poop at all for over a week, and was screaming for hours on end. We tried everything we could think of and were so desperate.
Our pediatrician was a God send, because although he couldn’t explain it, he knew something was wrong. He had seen Wyatt screaming, puking, and being in so much pain. He had been trying to help us find a way to treat his extreme constipation, and was doing everything he could to get us into a GI in the city. We were getting so desperate and Wyatt was getting so bad that we agreed until he could get into our pediatrician’s friend who was a GI at the Children’s Hospital that we would take him to another GI in Provo. It was a nightmare. He assumed from the very beginning, even watching Wyatt scream and puke, and seeing me covered in vomit, and in tears and pleading to him in his office, that I was a nut job and wasting his time. We trialed about 10 formulas under him, each worse than the last, and several foods.
When Wyatt was a year he agreed to scope him and see what was going on. After withholding the actual results and telling me I was just having post-partum and anxiety issues, I felt very strongly that we should not go back to him. After seeing his notes in Wyatt’s medical records, I thank God every day that I listened to that feeling. By this point, Wyatt was a year old, and weighed 14 lbs.; he hadn’t even doubled his birth weight. For his birthday, I followed all the advice given to us, I worked for days on a vegan gluten free cake, and coconut milk ice cream, and 4 hours after he ate it, and we celebrated him surviving his first year, he screamed and vomited so hard for so long that he passed out in my arms. He screamed limp in my arms for 12 hours. I had no idea what to do; I had never seen him in so much pain before. There were many moments that night that I cried along with him, it broke my heart in a way I can never describe to you. That day, Adam and I knew we would not feed him any new foods again, until we knew what was wrong with him.
Three months later, we were able to get into the GI at the Children’s Hospital. She was floored when we walked in. Wyatt was in my carrier, screaming bloody murder; I bounced and swayed from side to side, and tried to talk over him so she could see what was happening. He could not calm down. He was extremely constipated and his belly was swollen and in pain. His bottom looked like hamburger and his cheeks where red and looked like he had been slapped. His eyes were sunken and dark, and I will never forget the look on her face. She knew something was wrong, but she didn’t know what. Then, began the tests. She tested him for cystic fibrosis twice, duplicate stomach, a full body scan to see if his intestines and stomach were connecting, or if there was any kinking anywhere. She tested him for pancreatic disorders, and gallbladder functioning, and everything you could possibly imagine, and then she tested him so more. At that time, we learned that his left kidney was obstructed, and was only working at about 40%, and so we have had to add that to the list of specialists and things we have to keep an eye on. Nothing came back abnormal. The only thing that looked off on the tests was that his white blood cell count would get elevated, and he showed blood in nearly every stool sample we brought in.
Next, we saw an allergist, who tested him for tons of things, but only Eggs showed as a typical allergy. The diagnoses that we received from the GI were, severe and complete protein intolerance, and “Mother Killer”, which is a diagnosis given to children that scream consistently for more than 8 hours a day. Apparently 80% of mothers whose children fit that category either try and commit suicide, or suffer a severe mental break. She was always very good to check in with me, and make sure I was doing ok, and called my family doctor to make her aware so that she could help us get home health, or respite care. I always appreciated that, because she didn’t do it in a way that made me feel like she thought I was unfit, or was going to harm my child, but in a way to help me know I had support.
Under the care of the GI, we trialed more foods, and failed them so hard. I couldn’t take much more, and we agreed to give him some time to let his gut heal. She had hopes that we would grow out of it by 2, and we just couldn’t afford anymore ER visits, since we were averaging about 3 a month at that point. Wyatt was on 14 medicines at this point, we had trialed around 100 foods, and he was sleeping about 1.5-2 hours at a time, and then up and screaming and screaming before passing out in pain and exhaustion. It was miserable and there were days, I just would cry and cry because I couldn’t help my son. I wore him all the time, because holding him close was about the only way I could get him to settle down, and just breathe.
During this time, our rock star pediatrician retired, and I was devastated. He was our biggest advocate, and saw us anytime I needed help. The doctor that took his place meant well, but just didn’t know what to do, and just couldn’t help us.
Wyatt was hospitalized for a week because he had contracted croup, pink eye, RSV, Bronchitis, AND both viral and then bacterial pneumonia and was in terrible shape. This poor kid had no immune system and when anything was in the air it hit him hard. It was scary, and during that time we also learned that he had severe asthma, and it was during a reaction in the hospital we learned that he goes into bradycardia, has a low temperature, low blood pressure, develops an irregular irregular heartbeat, and struggles to breathe on his own. Needless to say that meant we had to meet with cardio and have a bunch more tests done.
After that, I knew it was time to find a different doctor. I called our trusty family doctor that Adam and I both saw, and started once again to do some research. One night, I typed in the same thing I had typed in a million times before, but must have typed it in a little different. I typed in delayed vomiting after eating, protein, and The FPIES Foundation website popped up. The more I read, the more the tears flowed down my cheeks. I KNEW this was what was wrong with my son. I printed out everything I could find for our doctor’s appointment, and when I got the doctor’s office, I plopped a stack of papers down in front of her and said: “I think Wyatt has FPIES”. Our doctor knew about him, and she knew what we had been through, and I knew in my heart, that even if she didn’t know what it was, she would fight for him. She said, “I have never heard of that before, but we need to get him into someone who does.” She encouraged me to just one more time try seeing yet another allergist and see if they could help. So when I got home, I called a random allergist at Riverton Hospital and made an appointment, not knowing what would happen. As soon as Dr. T walked in, I said,” I know you are going to think this is nuts, but I think Wyatt has FPIES, and I need to know if you can help me”. Miracle of miracles, he knew what it was, and he agreed with me!
Finally we had a name for what was happening to our son. I took the info to our GI, and she agreed too! No one knew quite what to do to help Wyatt, he was the most severe any of them had known, and so they decided to scope him again. He was scoped for the second time 10 days before his second birthday, and we were encouraged to trail grapes. We feed him grapes, which he struggled with slapped cheeks, poo issues, and sunken eyes, but no vomit so we were encouraged. We took a break for a couple days, and headed to my parent’s for his birthday, so excited that we would have something safe to feed him for his birthday. He ate a handful of grapes for dinner, and 5 hours later, like clockwork, he lost it. He screamed worse than his first birthday, and I finally had to take him for a drive so that he didn’t wake up the entire house with his begging screams. It was terrible. Terrible.
We drove home the next day, and I took him to the Children’s hospital late into the night because he was alternating with screaming bloody murder and vomiting, and I just didn’t know what to do. He was admitted after a ridiculous power play ER visit, and an x-ray that showed a severe bowel impaction. They tried to push fluids, and did 3 enemas in which not even the enema fluid came out, and his BP was dropping super low. They suggested sending us home after fluids, and it would work itself out, but I refused. I insisted on a surgical consult, and when they came, they said, he needs surgery NOW. 10 days after his last scope and colonoscopy, with a full clean out, my baby had to have surgery because he had a bowel impaction the size of a baseball from GRAPES. They placed and NG tube during surgery so that they could keep him hydrated and run some laxatives through it because of the pieces of impaction they couldn’t reach. He stayed for another week in the hospital before he could come home.
We were told that we needed to mix his infant formula to a higher calorie level since he wasn’t an infant anymore and needed more calories, and the second we did, he spiraled. His once semi-safe formula was making him drastically ill. He could not stop puking, and was pooping mucous blobs and blood. They switched him to the only formula we hadn’t tried, and the only one that was corn free, because we learned the upping his kcals, had sent his corn sensitivity into a full blown allergy, and was making him incredibly ill. He started to have black blood, and I was told to bring him to the ER, because he had an upper GI bleed. He had the most frustrating week long hospital stay, with the most frustrating ignorant doctors, that “googled FPIES” and told me that if he wasn’t puking blood he wasn’t sick, but apparently pooping blood is perfectly acceptable. The doctors working the GI floor wouldn’t call Wyatt’s doctors that actually knew about FPIES, and so I had to call them and demand help, and we finally got to be released.
In November 2013, we were able to pull some strings and get into THE chronic FPIES doctor in Denver, and he confirmed that Wyatt has the most severe case he has seen in person, and one of the most serve cases of FPIES he has ever heard about. He confirmed all the things he was experiencing were related to his FPIES: the behavior, the ASD and SPD symptoms that came when he was reacting, the shock, and times he coded with surgery and during severe reactions, the lack of sleep, the low immune system, the screaming, vomiting, diarrhea and obstipation (extreme chronic constipation), all of it. Every single thing. There wasn’t much he could have us do that we haven’t already done, but he validated everything that had happened and we were going through. He tested him for a couple more things, and gave us a few more things to check with his next scope at 3 years. He instructed us to do gut rest until at least 3, and possibly 4, so that we could give him gut a chance to heal. He told us that there is something else happening along with the FPIES, which we, and all our doctors have suspected from the beginning, and promised he would help us find out what it was. We have no safe foods right now, beyond formula, and that is really hard. Since Wyatt is on the rarer side of this rare disease, there is less chance that he will outgrow this, but hopefully with time, and gut rest, and patience, we will be able to find him some safe foods to eat.
In the months since we went to Denver, Wyatt has been really sick. He has been chronically failing his formula from the beginning (hydrolyzed dairy and soy derivatives) which is probably what gave him his third upper GI bleed in 6 months, and in true 2 year old fashion has snuck some little bits of food that have made him incredibly ill. He got a yeast infection right before Thanksgiving that spiraled into a full blown very serious systemic yeast infection, and landed him in the ER last week (his second ER visit of the year by the way). He sleeps a little better now, about 4 hours at a time. He has major poop issues, and I’m afraid he will until the end of time. FPIES reactions make him lose his little vocabulary, his eye contact, cause major sensory issues, and he regresses a lot in developmental areas. It takes him weeks and sometimes months to recover and to get his words back, and his eye contact. He hurts basically all the time, and yet, he smiles, and he laughs, and he loves people so much. He is so in tune to how I feel, and still cannot sleep without a hand on him. He is my miracle baby, and he is my life. His life has changed mine. And although it has been the hardest thing I have ever had to do, to watch my baby boy, the child I fought for, struggle, and hurt, and cry, it has changed me in all the best ways. He has renewed my hope in life, love, and my faith in God. He has changed me, I cannot think of any bad ways I have changed through this. He has brought out the very best in me, and makes me want to be a better person, more kind, loving, and patient. And when I think I cannot go on, I feel the strength in his eyes, and see his determination to just live.
I know that we have a fight ahead of us, and I know that it will not be easy, and I get scared that it will be harder than even this is, but I know, that if he can do it, I can. He is my angel on Earth, and my hero. He has shown me what strength is. Wyatt is amazing, and I feel it such an honor to be his mom.
Through this incredible journey, I have been blessed to meet some incredible moms, and their amazing children, and it has been such a blessing to learn from them, talk to them about things no one else understands, and problem solve with them. I have very tight knit group of moms that have become my people, and although I have never, and may never meet them face to face, I feel like I know them better than nearly anyone. We celebrate each victory of our babies together, and pray together in the really tough and scary moments. They are incredible, and I am thankful to know them. I am grateful to the FPIES Foundation for being the people that started it, and gave us answers after to searching for 2 very long years, they changed everything for us, and I love those moms as dearly as I do my own sisters.
I have such a full and overwhelmed (in the best ways) heart, and a deepened love for my family through all of this. They have been my strength, and unwavering lighthouse in this storm. My parents have dropped everything at a moment’s notice countless times to be with us, to help us, and watch Nana so that we can be with Wyatt, and my mom has listened to me sob on the phone, when no words would come, and held my hand, and just been there. We have been so incredibly blessed with the people God has placed in our lives at just the right moments, so that Wyatt could be ok, and grow, and learn, and hopefully someday be a normal boy, and eat food.
Wyatt’s family journals his story, visit: hopeforwyatt.wordpress.com
The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s). Use of our Web site constitutes acknowledgment and understanding by the user that within our Website there may be links to other Web sites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more on our link policy at: http://fpiesfoundation.org/about-us-link-policy/
Page published: March 11, 2014. Copyright © 2012,The FPIES Foundation