© 2012 Emilee Mason
In light of so many posts on Facebook about early introductions to solids, I feel that it is time to share my story. When my son Noah was about 3 weeks old, he developed a severe spit up problem. He was exclusively breastfed, but after every feeding session, he vomited, sometimes in an arcing spray that hit things 3 feet away. It was gross! He was gaining weight well, but I was concerned about the frequency and volume of the vomiting.
I tried feeding him in a sitting position, cutting dairy out of my diet, burping him well, etc. Nothing helped. After a few weeks, I took him to the doctor. The pediatrician suggested expressing my breast milk into a bottle and adding a bit of rice cereal. I was shocked and told her that I had been told no solids for a baby under 6 months. She said that many of the formulas that are designed for babies who spit up contain rice cereal to help “hold things down.” She told me either it would help, or it would do nothing… that there was no downside.
I went home, discussed it with my husband, and we decided that there was nothing to lose, but potentially a lot to gain… less laundry, easier feeding sessions, it all sounded good. So I got a bottle, expressed my milk, added a teaspoon of rice cereal per ounce as the doctor told me to, and began feeding it to him. At first, nothing happened. He ate it fine; I did it every few feedings since I really wanted to breast feed, not bottle feed.
He did not stop spitting up, though. After a few days, I called the pediatrician back and she told me that it might take a week or so to see results. Noah was a few days shy of 7 weeks old at the time. The next morning, I noticed that my son seemed extra sleepy, and that he wasn’t eating well. My older daughter had a cold, so I thought maybe he was getting sick, too. I put him in his bouncy seat and went to the next room to get his sister up for the day.
I returned after about 20 minutes. Noah was slumped over in his seat. He was blue. I screamed. I grabbed him out of the seat. “Noah! Noah!” I yelled. He didn’t respond to me. I screamed for my 2 year old to go get my phone. What was wrong with him? He finally stirred and woke up, but seemed very lethargic. My daughter had hit the “call return” button on my cell while bringing it to me. My mom was on the other line, had heard me screaming and was on her way.
In a few minutes, she arrived. I put Noah in his car seat and off we sped to the emergency room. We arrived; my mom dropped my son and me off at the door and took my daughter home with her for a while. I rushed in, screaming that he had stopped breathing and something was wrong. They brought Noah back to an examining room. His oxygen saturation level was 83. His temperature was 103.7. He passed stool during his temperature taking, and it was black.
Immediately, they noticed that he was severely dehydrated. How could he be? I breast fed him constantly, and gave him those 3 bottles a day of breast milk and rice cereal. It took 7 tries to get an IV into his arms because his veins were so little and shrunken from the dehydration. They immediately hooked him up to oxygen and fluids, and we were admitted to the peds unit.
They began testing his blood, urine, stool and vomit to try to figure out what was wrong with him. I was so scared. My poor baby was lying there with tubes, and wires, bluish, and not moving. The tests came back that he had no infections. There was blood in his stool however, and ketones in his urine. The doctors first asked if they could give him formula, but after I insisted, they agreed that I could breastfeed him. I climbed into that tiny crib, maneuvered all those wires, and nursed. The staff thought maybe he had some sort of weird stomach virus, and nursing him would help him get it flushed out faster.
After about 7 hours, he was much better. He was alert, looking around, smiling and cooing. The doctors said, “He’s fine, you guys can go home.” I wasn’t comfortable with that. He had been deathly sick just a few hours before and no one knew why. The doctor said, “Fine, you can stay the night if that will make you feel better, but he is fine.” They weighed him at midnight and found he had lost 4 oz in that one day. The nurses assured me that this was normal for the “stomach flu” and that he would gain it back quickly.
We were discharged early the next day. They instructed me to continue giving him the rice cereal in his bottle, so more of the milk would stay down and he wouldn’t get dehydrated. I did, and he seemed more peaked the next morning. I took him to his pediatrician. They weighed him, and discovered that he had lost 4 more oz since the day before. She immediately admitted him to the Neonatal Special Care Unit at the hospital across from the clinic.
There, they put IVs in and monitored him. I stayed and nursed, constantly, trying to help him gain weight. The nurses brought in the breast pump and told me to pump so he could continue to have his rice cereal. That night, he was weighed and found to have lost another ounce. I settled in for a long stay, figuring we would remain there until they figured out what was wrong with Noah. The next morning, another doctor came in, said his vitals were fine and they would discharge him immediately.
I said, “Wait, he’s still losing weight. Aren’t we going to figure out what’s wrong with him?” He said, “No, I found out you have CUP (state medical insurance). He’s okay and you guys need to leave immediately. We’re not going to pay for him to stay here anymore.”
I protested, called every number I could think of, and begged for him to stay. At last, the doctor grudgingly agreed, but said he had to be admitted as a ped, not as a NICU patient. They moved him into the tiny pediatrics unit, that was mushed in with geriatrics and non-violent prisoners from the nearby jail. The next morning, he had gained ¾ oz and was discharged. I asked if I should stop giving him the rice cereal, since that was the only new thing he had started since the symptoms started.
The doctor said, “No, nobody is allergic to rice. Cut out the milk in your diet. Or just put him on formula. We have great formula around here.” I took my baby home and continued breastfeeding him, and giving him expressed milk with rice cereal. Over the next 3 weeks, we were at the doctors almost every day. Noah became extremely fussy. He got a red rash on his face. He often passed black stool that was positive for blood. His spitting up continued. Appointment after appointment, I was told not to stop giving him the rice cereal. They told me to cut foods out of my diet: dairy, wheat, seafood, cruciferous vegetables, etc. I did it. Nothing helped.
Noah was about 13 weeks when he was hospitalized again. His weight had dropped and he was passing huge amounts of bloody stool. His rash on his face was so bad it was bleeding. He was dehydrated. He screamed all the time, night and day. The round of doctors all looked at him, shook their heads and said, “We don’t know.” Then, 3 days after we arrived, another doctor came in; Dr Hatcher-Ross. He looked at him, and listened to me tell again, about his symptoms and what he ate.
Dr H-R asked me questions about what his stool looked like, when I noticed the symptoms coming. He told me that he had done his internship with this doctor that was doing research in the field of gastrointestinal disorders. He said that there were a couple of rare disorders that characterized themselves with a slow-acting allergy to rice. The doctor asked me to take him off the rice cereal, and let him test Noah’s stool a week later. I agreed, and we were discharged shortly afterward, under close outpatient treatment. At first, I didn’t notice any improvement. After about a week though, the rash on his face got lighter. He slept for four whole hours. His stool became mustardy and less smelly. Doctor H-R tested his stool, and then met with us for a consultation.
He walked in the room and said, “Wow! Look at him!” Noah was sitting up, perky, smiling and happy. His stool no longer tested positive for blood. The doctor said, “You know, I think it's crazy, but I think he has Food Protein Induced Entercolitis Syndrome.” He gave us a ton of literature. I went home and began researching it. All of Noah’s symptoms matched. Allergic to Rice?
Over the next few months, amazingly, Noah’s system became more sensitive. He could not tolerate my breast milk while I ate rice, gluten, dairy, soy, most fruits and most vegetables. For nine weeks, all I ate was boneless, skinless chicken breasts, celery and a few other non allergenic foods. Noah went on Elecare part time, a hypoallergenic formula that costs up to 200 dollars per can, while we waited for all traces of dairy to be gone from my breast milk.
The doctor believes that the early introduction of rice shocked Noah's system, making him hypersensitive. As he became old enough for solid food, the problem worsened. He was allergic to apples, chicken, carrots, peas, and almost every other sort of food. He could handle ham and pineapple. That was about it. We started him on a therapy of probiotics and those strengthened his system to the point where he was able to get off the formula at the age of 3. I breastfed him until 2.5.
Now, at the age of 4, he is allergic to only a handful of things, namely soy, cow milk, rice, strawberries, shellfish, egg whites, bees, and toothpaste. I carry an epi pen with me everywhere because some of the allergens cause anaphylaxis. Others cause sleeplessness, internal bleeding, diarrhea that burns his bottom, and incredible fussiness and stomach cramps. Noah has 5 different specialists just for this problem: allergists, gastrointestinal doctors, feeding therapists, etc.
We can not take him to a restaurant where rice is ever served. Last year, his sister ate a rice cracker and shared a sippy cup with him. Noah ended up going into anaphylactic shock 3 hours later. If his classmates eat rice, they must wash their hands and rinse out their mouths before Noah can even return to the classroom.
I must always be hyper vigilant about people holding, hugging or even giving him high fives, in case they have ingested rice. This seems to be the most troublesome of his allergens, since it is everywhere and most people don’t believe me when I tell them he is allergic to rice.
“Nobody is allergic to rice,” they say. Yes, there are people who are. Rice is not just a harmless first food. Solid foods are not just fodder for funny faces, cute photo ops and more sleep at night. They can wreck havoc on a young baby body if given too early.
They can cause life long complications. Will he ever be able to travel? Be a doctor? What would he be like if we had just waited? If the doctors had been better informed? What would his life look like? Noah has undergone over 6 procedures that required general anesthesia already. He has gone into shock over 9 times, despite my precautions. Each decision we make as parents has an effect. We can’t just make decisions lightly, or because we want to sleep better, or because our child’s cousin looks so cute with those chubby cheeks.
Yes, Noah’s FPIES is rare. But it can be deadly. The consequences of a lack of information and misinformation can be deadly, and if not deadly, the consequences can hurt your child for a lifetime. Please, wait until your baby is at least 6 months old to give him solids. If I could spare even one person the hell we have gone through the last 4 years..."
Note the spaced upper teeth and straight lip, indicating a potential
upper libial tie, and perhaps other ankyloglossia,
thought to be a midline defect associated with MTHFR:
Note the areas around the mucousal linings of the eyes, nose and lips,
showing discoloration, hives and also dark circles, all an indication of gut injury.
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