Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

[title size=”2″]Meet Wyatt[/title]

Wyatt

Wyatt was born on a beautiful June day, 3 years ago. He has been a fighter from his very first seconds. In the womb, he fought to stay alive and grow. In his first moments of life, he fought to live and to breathe. Wyatt was born without surfactant in his lungs to help them expand and spent some time in the NICU getting help breathing. 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, he 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. 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. 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 a harsh “regular” formula and he had no change in symptoms. The second was a soy based formula to rule out 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 plateaued instead of rapidly dropping. 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 Godsend 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 he was doing everything he could to get us into a gastroenterologist 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 gastroenterologist at the Children’s Hospital, that we would take him to another gastroenterologist (GI) in Provo. It was a nightmare. He assumed from the very beginning, even watching Wyatt scream and puke, seeing me covered in vomit, in tears and pleading to him in his office, that I was a nut job and wasting his time. We tried about 10 formulas, each worse than the last, and several foods. When Wyatt was a year old, 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 pounds; 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. Four hours after he ate it and celebrated him surviving his first year, he screamed and vomited so hard and 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 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. 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, and 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, gall bladder functioning, and everything you could possibly imagine, then she tested him some more. Eventually, we learned that his left kidney was obstructed, was only working at about 40%, and we have had to add that to the list of specialists and things we have to keep an eye on. Besides the kidney obstruction, 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. 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. She 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 two and we just couldn’t afford anymore ER visits (we were averaging about 3 a month at that point). Wyatt was on 14 medications at this point. We had trialed around 100 foods. 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. 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. He 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. During a reaction in the hospital, we learned that he goes into bradycardia, has a low temperature, low blood pressure, develops an irregular heartbeat, and struggles to breathe on his own. Needless to say, that meant we had to meet with cardiologist 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 Food Protein Induced Enterocolitis Syndrome (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. 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 parents’ 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. 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.” Ten 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 an NG tube during surgery so that they could keep him hydrated and run some laxatives through 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. The second we did, he spiraled. His once semi-safe formula was making him drastically ill. He could not stop puking and was pooping mucus 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 that 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 frustratingly 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, so I called them and demanded help. We finally got to be released.

In November this past year, we were able to pull some strings and get Wyatt into the chronic FPIES doctor in Denver. He confirmed that Wyatt has the most severe case he has seen in person and one of the most severe cases of FPIES he has ever heard about. He confirmed all the things we were experiencing where FPIES: the behavior, the Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD) symptoms that came when he was reacting, the shock, the times he coded with surgery and during severe reactions, the lack of sleep, the low immune system, the screaming, the vomiting, the diarrhea, and the obstipation (extreme chronic constipation). All of it. Every single thing. There wasn’t much he could have us do that we hadn’t already done, but, at least, 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 three years. He instructed us to do gut rest until at least three, and possibly four, so that we could give his 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. Right now, we have no safe foods, beyond formula, and that is really hard. Since Wyatt is on the rarer side of this rare disease, there is less of a chance that he will outgrow this, but, hopefully with time, 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 hydrolyzed soy and dairy formula which is probably what gave him his third upper GI bleed in 6 months and, in true two 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 that landed him in the ER. 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 and his eye contact back. He hurts basically all the time, and yet, he smiles, 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. 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. 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. 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. 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. 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. We 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 searching for two 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. My mom has listened to me sob on the phone, when no words would come, 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, grow, learn, and hopefully someday be a normal boy and eat food.

AUTHOR: Jessie Richens
If you would like to contact her, Jessie has been kind enough to share her email: j…@gmail.com

1 Comment

  1. Shannon Anderson

    This is such a powerful post! I think I went through several emotions just reading it as my heart was torn for you and your son. Thank you for helping to bring awareness to this and putting it out here so others who might need answers have somewhere to go.

    Reply

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