July 9th, 2013 we welcomed Odin Lewis Poole into the world. It was the most amazing day of my life thus far. I had always wanted to be a mom and that day my dream came true. The first few weeks we lived in complete awe of our little guy. He was such a happy and easy going little man. He was born with crazy hair and a small, serious face that made him look like a wise old man. We had the normal struggles that many new families go through with nursing and sleep, but things still moved forward. It was about the 3rd week of Odin’s life that things started to change. Our happy content little guy seemed so much more irritable and fussy. Breastfeeding became a bigger challenge and at times it was a downright fight to feed him. He started spitting up and screaming as if he was in pain. He would scrunch his little legs up and then kick them violently. We would swaddle him, and bounce him for hours and hours on end. We would take him to the pediatrician who said maybe reflux or colic. We started him on reflux medications, but we didn’t really see much improvement. We tried gripe water to help the fussiness, but that didn’t work either. I don’t think anyone can ever be fully prepared for the rigorous job of parenthood, but we were starting to feel majorly defeated. Family and friends would come to visit and offer to hold him while we slept, but I couldn’t hand over my screaming baby for fear that they wouldn’t be able to calm him. We are his parents and we should have been able to make it better and we couldn’t. Nursing started to become downright dreadful. We were being treated for thrush and I was so torn up from the attempts at nursing that it wasn’t enjoyable for any of us. I wanted desperately to be able to nurse my baby. I had been crushed when I was told I would have to have a c-section because he was breach, I wasn’t going to fail at breastfeeding. Since the reflux medication wasn’t working, we tried cutting milk out my diet to see if this helped. He continued to projectile vomit and scream endlessly. We then tried cutting out soy and wheat. Having allergies of my own, my diet became very minimal. I was doing it for Odin though so it was totally worth it. We saw some improvement, all be it minimal, but the screaming continued. We were convinced there was something wrong with our baby. He was growing slowly, but growing. We kept being told it was colic and not to worry, he would grow out of it. I remember crying while bouncing him on a therapy ball in the middle of the night wishing for it to stop. We argued all the time from lack of sleep and/or from lack of knowing what else to do. I actually dreamed of going back to work to get away. We started Odin in a daycare at 3 months old and it was a disaster. We lasted maybe 2 weeks. We would pick him up at the end of the day and we were told he had screamed all day and wouldn’t sleep. He looked horrible some of those days. I managed to still work some days but Odin became my full time job. We were determined to figure out what was wrong with him. I don’t remember now exactly what made us decide to try formula, but at some point along the way we made the decision that it needed to happen. Breastfeeding was long gone at this point since I developed Reynaud’s of the nipple from the constant abuse nursing caused. I had pumped for months but no matter how hard I tried we couldn’t eliminate enough stuff from my diet to keep him from vomiting and screaming. He also would get diarrhea that just would cause his poor bottom to bleed. We would have good days and nights and then the screaming would start and we would be up all night. We knew it was food, but couldn’t figure out just what food. We saw an allergist who tested him and said, “no allergies”. We tried 2 hypoallergenic formulas with no luck. We finally found a GI specialist that gave us elemental formula, which of course Odin wouldn’t drink, but were reassured that someone else agreed with us that it wasn’t colic. We eventually went cold turkey on the formula and things actually started improving. Our happy little baby was coming back. We still battled vomiting, blistering diaper rash and reflux symptoms but things didn’t seem so bad. Through all of this we had a barrage of tests. We had a barium swallow, no aspiration. We had an EEG because he started having seizure type movements. We were terrified but told no seizures probably just reflux. We had a pH probe that told us the twitching he did was in fact reflux related, but the reflux was actually very minimal. So we stopped meds. We were told to try rice cereal in his milk to see if this would help some of his symptoms. This was a horrible idea and backfired enormously. The screaming and vomiting and diaper rash started all over, as did the twitching. We went back on the meds and said no to rice. We tried the normal first baby foods when the time came, sweet potatoes, oatmeal, and peas. We had rashes and screaming and more projectile vomiting. Peas caused him to vomit so much that when the vomiting stopped he couldn’t lift his head off of Gary’s arm. He didn’t even have the energy to cry. It was terrifying. At this point we stopped feeding him solids. On just the formula, things were okay. He would sleep better, play and develop like his little play group buddies. He hit all his milestones when he was supposed to. He was growing, at the bottom of the charts, but growing. Our GI doctor sent us to an allergist for an evaluation of something called FPIES. I had spent hours upon hours searching the internet for some diagnosis for Odin, because we knew something was just not right, and had come upon FPIES just a few days before. It fit! Food Protein Induced Enterocolitis Syndrome. This is what he had. I know you are not supposed to be happy when you are told that your child has something wrong, but it just verified for us what we already knew. There was a major weight off of my shoulders. This was it. He had FPIES. Now what? We were given a huge list of foods not to feed him, including grains (rice and oats…oops), legumes (those dreaded peas), sweet potatoes (yup, tried those too), eggs, milk, soy, nuts, chicken and turkey. It didn’t leave us much left to try, but it was a start. Odin now eats bananas (his favorite) and most fruits and corn (cereal and pasta forms). We have tried many foods with him, some with bigger consequences than others and every time we try something new I am terrified. We are lucky that the major vomiting reactions are minimal for us. We still spend many nights awake for hours and hours when something doesn’t agree with him and he still gets the blistering diaper rash, which isn’t fun, but it beats the alternative of the lifeless baby post vomiting attack. Who is Odin...? Odin is a superhero! He is our amazing 14-month old little boy who walks, I mean runs, around all day long laughing and getting into any mischief he can. He is busy busy busy, climbing and exploring anything he can reach. He loves puppies, elephants, balls and his golf clubs. He loves reading and being silly. He loves water and for some reason…shoes. He has a ton of signs and words that he uses on a regular basis. He is beautiful and he will always be my baby. He is worth every struggle that we have had and every struggle that is still to come. We are his parents and we will fight for him every step of the way. We hope he grows out of all his allergies, but if not we will be there for him. We will continue to teach him and others what to watch out for so he doesn’t get sick. It breaks my heart daily when he looks at my food and says “mmm”, but we say “no” for him. We are glad he doesn’t hate food. We are thankful he still wants to eat. We are blessed that he is growing and thriving like his playgroup buddies. Odin is not alone. There are many kids out there with FPIES and many people who still don’t know what FPIES is. What is FPIES…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. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger. We thank everyone who has been part of our FPIES journey. You are our support and have helped us in more ways than you can possible ever know.
Posted on: Tue, 30 Sep 2014 02:11:20 +0000
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