Thursday, November 1, 2012

The Aftermath of Introducing Rice Cereal in a Bottle


 © 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.

Related posts on this blog:

Cereal, anemia and alternatives:
http://guggiedaly.blogspot.com/2011/04/feed-babies-food-and-not-cardboard.html

Folic Acid, MTHFR and alternatives:
http://guggiedaly.blogspot.com/2010/06/is-folic-acid-only-and-best-choice.html

Come join us on our new Facebook page to learn more about MTHFR:
http://www.facebook.com/ModernMTHFR?fref=ts


79 comments:

  1. Thank you for sharing your story! My son also has FPIES which we found out after he had reactions to both rice cereal and oatmeal cereal. I luckily was able to exclusively breastfed him till 6 months and we didn't introduce rice until he was about 7 months old after our pediatrician "suggested" it. We have found other foods that he is sensitive to but we are lucky to not have had some of the serious reactions that other children with this condition can have.

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    1. Thank you for your response. It's very hard to watch our kiddos suffer like this.

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  2. So glad you posted this! While I was pregnant, I read Dr. Alan Greene's warning about how the "rice cereal trick" could have a negative impact on the body's ability to know when it's "full" so I resisted when my mom suggested it and I'm glad we did.

    It occurs to me, though, that gut injuries are very commonly associated with vaccines, and while you didn't mention any vaccinations he might have received, the initial leaky gut problem might have been caused by a vaccine injury, and then complicated by how young he was when he got solids.

    There's a lot of great information in the Autism community about healing the gut because parents have pioneered alternative techniques after hearing, as you did, the same useless junk from doctors over and over again. You might see if you an get him in to see a DAN doctor, or contact someone at TACA about healing gut injuries!

    Good luck!

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    1. Vaccines are not an issue with Noah as we do not vaccinate. Thank though.

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  3. Mostly, i think, Noah's bad reactions are to the fact that we kept giving him the offending foods long after he started reacting. With regular allergies, drs have found that if you give a little over a long period of time, they can build up a resistance to the allergen. With FPIES kids, the reaction just gets progressivly worse each time until they develop shock and even death. We just had no idea. I had to take him to a teaching hospital 45 minutes away to find someone who even knew what I was talking about.

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    1. I tend to agree. As a friend once reminded me a long time ago Doctors are only licensed to Practice medicine and they are practicing on you and your family. I recently took myself off a blood pressure medicine for a while until I could see my doctor after Easter because the side effects were such that I could not stand taking them anymore. I informed the doctor as soon as I could see her next that I would not take those and she would have to come up with something that didn't have the two ingredients in them.
      You don't always realize that your doctor while he or she is a good source of medical knowledge doesn't know everything and that each person though similar in many ways is also different in many way as well.
      For me a sign of a good doctor is that they express a willingness to try something new or different due to that fact.

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  4. Please look into the lectins connection. Rice is high in lectins as is most of the things you listed (soy, dairy, celery, nightshades, etc, plus concentrates in animal proteins). Not every lectin sensitive person reacts to the same lectins, but once the body is "poisoned" by them, it's hard for the body to calm down.

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    1. THank you. I will definitely research it. :) I appreciate your feedback.

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  5. My younger kid was allergic to rice! But she was 2 already and I had experience with the first one being allergic so it only took me 2 weeks to discover the reason.
    We went for this alternative treatment called "biorezonans" and she's fine again (also the older one from her milk allergy).

    I have never heard of any allergy being so strong-sharing a sippy cup! It has to be so hard to live with this potential everyday danger.

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    1. Some allergies are so bad that just being in the same room with someone that has consumed this can cause issues. Allergies are very real.

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    2. I have a dear friend who has severe allergies to several kinds of fruit, especially apples. One night she was cheering at our high school football game and her then boyfriend, who had eaten an apple several hours prior, put his hand on her bare leg and she had an anaphylactic reaction. So yes, I can completely see sharing a cup being a problem.

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  6. Thank-you for sharing your story. My daughter has EGID and has mulitiple food allegies. people are often shocked when I tell them she is allergic to milk, eggs, wheat, soya, chicken, fish, pear and poss a few other things!

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    1. Yes, its hard for people to grasp that EVERY single food has the potential for someone, somewhere to be allergic to it. It boggled my mind at first, too.

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  7. What a journey you have been on! Thank you for getting the word out to other parents!

    Have you tried the GAPS diet yet? I've heard that can help heal the gut.

    I'm a lactation counselor and I wonder if your son's relfux problems were associated with his lip tie. And, since many infants with a lip tie often have a tongue tie, I do wonder if he has a hidden tie, such a posterior tongue tie. Tie tie issues (mid-line defects, as you wrote in your post) can cause reflux. Unfortunately, most peds docs do not know this and instead of trying to find the cause of the reflux, they treat the symptoms instead (as in your case with the ice cereal suggestion - a very outdated practice that is actually considered a choking risk - and health - among the more updated medical community). You won't find any evidenced-based information on reflux and tongue tie as of yet. But, here is an excellent link from Dr. Kotlow. You can even email pictures to Dr. Kotlow and he can tell you via email what your son has. If decay, sleep problems, etc., are a problem, he can help you find someone to release those ties. All Dr. K's articles are great - but scroll down to his one on reflux. http://www.kiddsteeth.com/articles.html

    I also wonder if you had over-supply on top of lip and tongue ties. My second daughter had exactly what your son had, as far as projectile vomiting. But, she also had explosive bowel movements and gas. She did not have colic. On top of my over-supply to deal with, she did have a posterior tongue tie and lip tie-which could have contributed to her gas and vomiting. She did not have problems with latch, however, my son, born several years later, struggled with mild reflux as a result of his posterior tongue tie and lip tie and my over-supply. He also had a horrid latch. Dr. Kotlow released his ties when he was three-months-old. Helped a great deal! He's now 13-months-old and we are happily nursing. We delayed solids until he was nearly seven-months-old and at first, only introduced non-grain foods. He appears to have no allergies whatsoever, thankfully.

    Good luck with your continued journey!

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    1. We did have some oversupply issues. And he had the upper tie, but my ped assured me that this was not going to interfere with nursing. To this day, at 4, he is still a reflux-y kid. I do believe that contributed.

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    2. Tie revisions have been done in elderly individuals with life-long reflux problems and resolved those issues for them. If reflux is still an issue for your son it might be worth looking into possible revision for him. Maxillary ties are frequently associated with tongue ties so even if it's not an obviously visible tie he may have a posterior tie which is much harder for someone who doesn't really know ties to spot. Ties can not only affect the peristalsis of the gut (hence the reflux and common issues with digestion) but also palate and teeth. A revision will likely be much cheaper than orthodontics down the road :) Sadly most pediatricians know nothing about maxillary or tongue ties, beyond maybe identifying a severe one. They lost that information and wisdom when bottle feeding became the norm. Fortunately there's a growing number of knowledgeable and skilled practitioners like Dr. Kotlow.
      -Rachel

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    3. Thanks! I will look into this. :)

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    4. How does one find a Dr who would be able to look for these ties? I'm in Canada, and can request a visit with specialist for my refluxy son- we keep having to increase his reflux meds instead of decrease them as we should be doing (he is bottle fed and has severe lactose/casein allergies so on prescription formula).

      My Ped is a very "laid back", don't worry about it until it really HURTS kinda guy, so I have to be pro-active in my sons care regarding specialists.

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    5. Where would one find a specialist who could tell about ties? I have an 8mth of with lactose/casein allergies and is on 'script formula because of it. He had always been reflux-y, and we keep having to increase his reflux meds instead of decrease them like most kids his age. I'm wondering if this may be an issue for him as well.

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    6. If you live in Canada you have the best pediatrician that is a great breastfeeding supporter and has written a book or two! Dr jack Newman. Look him up. Mothers come from all over the world to have him help them with breastfeeding

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    7. I'm a few years too late on this original post but it just popped up in a mom group on facebook. My son spit up quite a bit when he was a newborn (3 months old now). I had asked his LC and Ped about possible reflux. They both said he is gaining weight fine so it is just a laundry issue. Also that "it looks more than what it really is." A few moms then started talking about lip/tongue ties so i started looking into it and I'm pretty sue he has an upper lip tie. How do I go about finding a Ped or specialist that knows what they are doing? He breast feeds fine and his spittung up has slowed but occasionally he spit up a whole lot in one feeding. Thanks!

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  8. I just typed up a long post and may have lost it. I'll repost it if this one "takes."

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  9. My 5 year old twins first got rice cereal on a spoon at 5 1/2 months. They screamed and screamed for DAYs. We tried again every 2 weeks with the same agony every time. Rice is not completely benign, and now my daughters have Celiac disease despite starting solids during the magic window of 4-6 months. Now the tolerate it but they never did eat rice cereal as babies without days of pain and screaming. Noah's case is rare, but i believe all kids run the risk of gut damage should they start solids too early. We just dont know the long term risk for any child eating any food early.

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    1. I agree with this. I think that their tiny bodies are just not ready to handle stuff like that. And i dont think enough is done to really inform parents of the DANGERS and HARM that can come from introducing solids early, especially grains.

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  10. Wow I am shocked the doctors treated u this way! I hope u alerted the media and called a lawyer! thank u for posting this story I'm glad he survived u guys are very lucky! he's a beautiful boy! so sad u had to go through that

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    1. I did not do either. I, unfortunately, did not know this was bad or not okay to be treated this way. I thought surely that licensed doctors knew more than little me. It took a while to really understand that i had to be the advocate for my son in every way.

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    2. The problem is that the doctor likely didn't know. They can't know everything. Unfortunately the one thing I feel the doctor should have done is the thing you suggested and take him off the one thing that had changed the rice cereal to see if it caused a change. Since Noah had not been undernourished before starting the rice cereal it was obvious he was capable of getting the nourishment from you.

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  11. I used rice cereal in formula, except not a tsp per oz! 1 tsp per 5oz and it was great! Before then, my son would eat every 90 min at 9-10 weeks old. After the one bottle of rice cereal, he finally slept 3-4 hours.

    I also introduced solids at 4.5 months. There is a new study published out (in the Nov issue of Parenting Magazine) that says waiting till 6 months has not proved that food allergies were reduced in anyway: if your child is allergic, they will be allergic at 4 months, 6 months, 9 months etc.

    I absolutely agree that parents need to be extra diligent when giving solid foods, and watch for reactions. Waiting until 6 months to give solids is NOT the moral of this story: its to trust your mother's instinct and that sometimes doctors are wrong: with babies and adults alike.

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    1. "Best practices" change constantly, don't they?!? And as far as FPIES go, it is research that has shown that the earlier a child is introduced to food, the more likely the system is to be shocked and develop this.

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    2. No that IS the moral of this story, babies bodies are not ready before then period. I don't care if gerber or anyone else tells you that, they have everything to gain and you everything to lose don't buy into it! My relatives started feeding my son rice in his bottle (the same ammount 1 per 5 ounces) and he at first seemed fine then had horrible rashes. They gave him food (baby veggies fruit etc) he broke out and screamed! What harm is it going to do to wait 2 or 3 measly months? A lot less then the life time of damage that can be caused by rushing.

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    3. No that IS the moral of this story, babies bodies are not ready before then period. I don't care if gerber or anyone else tells you that, they have everything to gain and you everything to lose don't buy into it! My relatives started feeding my son rice in his bottle (the same ammount 1 per 5 ounces) and he at first seemed fine then had horrible rashes. They gave him food (baby veggies fruit etc) he broke out and screamed! What harm is it going to do to wait 2 or 3 measly months? A lot less then the life time of damage that can be caused by rushing.

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    4. The moral is don't feed your child shit formula. Feed the best breast milk. Don't give solid food when the baby clearly is supposed to be eating breast milk only until siix months plus. And sure as shit don't listen to doctors as sadly manly of them surprisingly are ignorant on baby care. Do what you know is best.

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  12. My son had severe GERD as an infant ( and it didn't resolve until he was almost 2). It worsened when he had rice products (when he was about 5 months old). Our pediatric GI doctor mentioned that he had seen a lot of children with reflux have problems with rice. We didn't give him anymore until he was closer to one year.

    Also, all of my children have had the labial frenulum tie. My oldest did not have it clipped because I didn't know they did that, my other two have had it addressed. (My oldest busted it on his own about 6 months ago when he was 2-1/2).

    I had someone suggest giving him rice cereal in his bottle when he was 6 weeks old to try to help him the same way your ped suggested it. I resisted because I had been told by people I trusted not to do it. I'm so glad I listened. When I was at work and my son DID get bottles, we used Thick It (approved by his GI) to help, but he was otherwise exclusively breastfed.

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    1. I'm glad that your situation worked out okay. My son busted his own tie at 1 1/2 falling, so i dont think its an issue any more. I think the widely spaced teeth are now due to pacifier use. He had to have it so much in the hospital as a little guy when he was tied down to tubes and wires and i couldnt satisfy his sucking urge with the breast, and now he is HOOKED.

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  13. Wow. I wish I had known this years ago. our twins had 'fortifide' rice bottles from 4mo until 12mo or so. I wsh I'd known...

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  14. Noah only received one vaccination... at 3mo old for rotovirus. Had such a reaction he has not had any more. He did not have any at birth. We are cautious about vaccines because of the experiences with my older child.

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    1. Rotovirus has one of the highest instances of reaction. In fact, the reaction can be almost as bad as the disease it supposedly prevents. My pediatrician, while definitely not anti-vaccine, said that one was fine to skip. It's only necessary when you are in a remote location (like a 3rd world country) where the water is contaminated and there is no easy access to a hospital. The only risk is severe dehydration, and an IV at a hospital would prevent that. My son has had selective/delayed vaccines, and really hasn't had any issues.

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    2. Every single child is different. Some babies need more than formula before 6 months old. Clearly to me any smart person would stop giving their child something as soon as a problem came about. My 4 children have been lucky enough i guess you could say to enjoy mushy solid food before 6 months old, they also had rice cereal in their bottles and none of them have EVER nor will they EVER miss a vaccine. If a child is allergic then they will be allergic no matter what age the food is introuduced. My son had a seriouse vomiting issue however it had nothing to do with breastmil, cereal,formula or early foods. His problem was his pyloricstynosis, he had surgery at 7 weeks old to fix the problem and he has been fine since then. It is only "SUGGESTED" that you wait until 6 months before introducing solids. Please remember there is no handbook when it comes to raising a child. What works for one child may not work for another. What worked in the 50s may or may not work today. EVERY CHILD IS DIFFERENT. It is good to get stories like this out there so parents are aware of what could happen,just remember it does not mean that it is GOING TO HAPPEN.

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  15. Since I know you and your story personally I can attest to the devotion and courage you have shown in coping with this issue. Allopathic medicine has little to offer in terms of gut healing. Sadly, many parents have to try to navigate the rocky terrain of food allergies alone. Your post will bring awareness to the fact that rice/grains is not a benign food and that the early introduction of solids can be harmful. In my lactation practice, I see gut health issues on a daily basis along with harmful ideas presented by well-meaning health care providers. In terms of gut health we are in crisis mode as a society. Luckily, awareness is increasing and as mothers begin to heal their own guts our future generations may have a better chance at being healthier. Thank you Emilee for being part of the healing revolution!

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    1. Thank you, Melissa! Without your support and dedication to my son and I, we would not have suceeded in re-establishing nursing, nor made it anywhere near 2 1/2 years of nursing. We also would not have discovered probiotics, and he may have ended up permenantly on a feeding tube. Thanks so much!

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  16. My son also has FPIES. He is 13 months old. He had his first FPIES reaction to rice cereal at 12 weeks old. Like your son, it was suggested by our GI that we thicken his bottles with rice cereal to help his constant refluxing. That didn't go over too well. Up until that point my son had been breast fed and supplemented with formula because he was refluxing so much he wasnt gaining any weight. He had blue spells, oxygen desats etc on formula that landed us in the hospital as well. At the time he was diagnosed with a "cold" and we were sent home.

    Anyway, my son has been pretty sick from FPIES reactions. His worst so far have been to rice and peas. It took us many months to find a safe food, bananas.

    I just wanted to point out a few things though. FPIES is a non IGE reaction meaning it can't cause an anaphylactic reaction. If your son responds that way to rice then he is IGE to rice, as my son also is, as proven by allergy testing. And that is not always considered to be because of the FPIES.

    I'm surprised that your son is still dealing with many reactions at his age. I know some FPIES kids don't outgrow their allergy by the 3 year mark they say they should but its very few kids who don't.

    Elecare isn't 200.00 a can, a case of 6 is though.

    If a child has FPIES, it doesn't matter when the introduction of a common trigger, like rice is done. They will react at 3 weeks, 3 months or 9 months. Any first food could cause the same reaction in a FPIES kid.

    When my son eats a trigger food, like when we are trialing a new food, if it is a bad reaction it takes him weeks to recover. Because of this he has difficulty gaining weight. His gut takes a long time to heal.

    He is 13 months old and weighs 15lbs. He has a g-tube in which he receives half his daily nutrition from in the form of Elecare.

    FPIES is just one of the things we deal with so I know your struggle.

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    1. The doctors think that because he had sooo many fpies reactions over such a long period of time, his system developed Anaphylaxis to rice. It wasnt anaphalactic at first. And my doctor really thinks that fpies can develop from a compromised gut. We really dont know a ton about this syndrome yet. I wish you and yours the best.

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  17. WOW! Thank you Emilee. I am a lactation consultant and this complaint often happens to be accompanied by blaming the breastmilk. I talk to so many women who are confused and scared by a reaction to either formula or early foods, and I am going to spread the word that everyone should read your blog. Seriously, MUCHAS GRACIAS! Isabella

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    1. My local La Leche League leader is the one that can be credited for that discovery. I was so scared, told her what was going on, and she immediately helped me. She is now a lactation consultant and runs her own business. I will never forget her kindness and caring.

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  18. Thank for sharing this story. I also can't help wondering if hidden GMO's or over processed, white rice were at the heart of the problem? But even so, I agree, we should wait until our babies are older.

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    1. The rice I used was Earth's Best organic rice cereal, but it is still somewhat processed, right?

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    2. Carol, I was thinking the same thing. Also rice naturally contains arsenic (worse with brown rice) and unless a product says it's 100% organic, it may not be GMO free. USDA and certified organic do not mean GMO free. There are also organic products such as carrageenan (usually found in dairy type products) that cause intestinal disorders in rats that can be a source of GI bleeding. I found this blog because my 4 month old hit another growth spurt and it was suggested to give him cereal and I'm super nervous to do so. Em- thanks for sharing your story. I am a midlevel medical professional, and can vouch for the fact that, no, we don't know it all (no one does), and there are so many variables when it comes to food- the studies and evidence based medicine just isn't out there, so many times there is no information to go by. Regardless, there should be respect on both ends, I'm glad you found a provider that tried something different.

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    3. Really? I thought if it was certified organic it couldn't be GMO. :(

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    4. There is no GMO rice at present. It is under development. So it couldn't be the GMO rice, since that doesn't exist.

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  19. Thanks so much for sharing your story. It has made me more aware. And I wonder if hidden GMO's or insecticides, etc. played a hidden role in your baby's reaction. Well, babies shouldn't need solid food that early so that is the moral of this story. Also read the above comment and that is another consideration. Did your baby have any shots/vaccines near that time? We rush too much these days to vaccinate and introduce solid foods.

    God bless!

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  20. Thank you for sharing your story! I have said over and over to people, wait until six months, wait until six months! But they don't believe me! Our society is so steeped in result driven motives that we force our children to do things well before their little systems are ready for them. Your story is a testimony to people, to slow down and give their babies the chance to grow without rushing them on to something they are not ready for.

    It amazes me what some in the medical community tell nursing mothers. It seems that some are truly ignorant of breastmilk and breastfeeding. My sister had projectile vomiting problems with her oldest son and had an ER doc tell her he was allergic to breastmilk and should switch to formula! How crazy. Amazing that our society believes a cow's milk product is superior to human milk to feed HUMAN babies!

    I will admit, that I am one of those who said "Rice!, No one's allergic to RICE!" when I friend of mine told me of his allergy! I believe him now.

    Much luck to you are your children, thank you for sharing!

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  21. My son has FPIES as well to dairy, soy, eggs, coconut, sodium lactate, and cottonseed oil. We saw the projectile arc vomit from the time he was 2 months old on. He was a preemie so he didn't start taking in enough formula to cause the dairy FPIES reaction until he was 2 months old and took 4-5 ounces a feeding. Thankfully we are not FPIES to rice because he does take rice cereal in his bottles for GERD in addition to being on Prevacid.

    I am so sorry the doctors didn't listen to you and kept you poisoning your son. I know that feeling. It took us three allergists, a gastroenterologist, and two pediatricians to get the FPIES diagnosis and begin working with it. I have seen the acid poo butt burn, the rashes on the face, the bloody stools, and all the other symptoms you described and I wanted to cry for Noah and you as I read through this.

    Not enough is known about FPIES and people are still constantly trying to say that the issue and symptoms are due to this or that and to try this or that to fix them when the only solution is strict avoidance. Dietary plans won't work for FPIES unless the plan is to NOT EAT THE FOODS. The reactions are not due to physical issues either. The reactions to these foods are cell mediated gut reactions where the body thinks the food is toxic and the cells attack, making the vomiting and diarrhea happen, which causes rapid dehydration and then the shock reaction, which your Noah had initially.

    So much is still unknown about FPIES and there are so many to educate about this extremely rare disorder that only affects 1 in 100:000 kids.

    For those that are not familiar with FPIES and wish to learn more, check out http://iaffpe.org/ and http://fpiesfoundation.org/

    I hope that Noah's reactions lessen in severity as he gets older and that he is one of the 60% that outgrows this horrible disorder that rules our children's lives. My little guy is 26 months old, sill almost exclusively formula fed on Elecare Jr, and has take Prevacid daily to control his GERD and allow him to actually eat food. He is on pureed baby food because of swallowing issues that his doctors suspect are because of eosinophilic esophagitis (EoE or EE) and quite a few FPIES kids also have EoE.

    Best of luck to you and Noah and to anyone else out there whose little one is dealing with the same issues. FPIES is a life changing disorder that controls every little aspect of life from what to cook, where to eat, art supplies (many contain soy, rice, eggs, or other ingredients that many FPIES kids are allergic to), and sometimes even what soaps, lotions, toothpastes, and other hygiene products we can use for ourselves or our children.

    Take care and I'll be keeping you and Noah in my thoughts.

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    Replies
    1. FPIES is very hard to deal with. Like i said, so many doctors said he was allergic to my breastmilk, which i knew he was not. And many others said it was just a stomach flu. For months on end? I dont think so. And still others just wanted to fix the symptoms but not figure out what was causing it. It took a long time to get the FPIES diagnosis. We have done two endoscopy/colonoscopies that ruled out EE. I was told that if he was going to outgrow it, he would have done so by the age of 3. I am still hoping! He has outgrown some, while others have become worse. Now that he is older, his FPIES symptoms also "come out" behaviorally. Older, well, ya know, he's only 4. I think his system is becoming over sensitized again. A few months went by with no symptoms and over the past month or so, he's been nothing but "black eyes", fussy, stooling in his sleep, etc. AACK! Thanks. Thinking of you, too.

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    2. So my son has eosinaphilic esophagitis (EOE) and I'm kind of wondering if he has this as well. He is 3.5 yrs old and his last endoscopy about 6 months ago showed that his count on the biopsy was over 209 ( under 15 means their doing well and over 100 is bad so his was really bad) and that was after removing dairy, soy and eggs from his diet and him being on elecare since he was about a year old. We have no taken out wheat from his diet and he never eats shellfish and almost never eats anything with nuts except peanut butter. He still complains of his stomach hurting all the time and they keep increasing his Prevacid because it never seems to help. I know with EOE there is no way to test for the allergies other than removing thinges you think their allergic too and then doing another endoscopy in 3 to 4 months. He wakes up crying every night and he also has been complaining of his joints bothering him all day and all night. I have no idea what to do. What do they do to test for allergies with FPIES? some of the allergies I've seen listed in the comments are not normal ones they test for so I'm just wondering how they figured it out. Now my son that is 5 months old we think has EOE as well because every formula we gave him he continued to have gas and spitting up a lot and so we switched to soy and it seemed to be OK for about 2 weeks or so and then he started developing a rash whenever he had a bottle and the longer I gave it to him the worse and further the rash would spread so finally we told the Dr and she switched us to elecare and referred us to the same GI as our other son. He is still spitting up but doesn't have the rash anymore. However I tried starting him on rice cereal and the first 2 times he had it he cried and cried and the 3rd time he got a small rash on his cheeks. I've tried quinoa cereal and he seems OK but he has a bad reaction to the rice cereal and it's the beech nut brand. I'm wondering if he has FPIES as well because his reactions are worse than my other sons were. Also my 3.5 yr old is autistic and has sensory issues. We had to postpone giving him cereal or anything because he had trouble swallowing. I wish I could have nursed both of them unfortunately my milk sup ply just has never been good with any of my 3 children and I have tried anything and everything to increase it so that's why their on formula. Thanks for any help you could give ladies :) and I wish you guys all the best on your journey.

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  22. My son has FPIES as well to dairy, soy, eggs, coconut, sodium lactate, and cottonseed oil. We saw the projectile arc vomit from the time he was 2 months old on. He was a preemie so he didn't start taking in enough formula to cause the dairy FPIES reaction until he was 2 months old and took 4-5 ounces a feeding. Thankfully we are not FPIES to rice because he does take rice cereal in his bottles for GERD in addition to being on Prevacid.

    I am so sorry the doctors didn't listen to you and kept you poisoning your son. I know that feeling. It took us three allergists, a gastroenterologist, and two pediatricians to get the FPIES diagnosis and begin working with it. I have seen the acid poo butt burn, the rashes on the face, the bloody stools, and all the other symptoms you described and I wanted to cry for Noah and you as I read through this.

    Not enough is known about FPIES and people are still constantly trying to say that the issue and symptoms are due to this or that and to try this or that to fix them when the only solution is strict avoidance. Dietary plans won't work for FPIES unless the plan is to NOT EAT THE FOODS. The reactions are not due to physical issues either. The reactions to these foods are cell mediated gut reactions where the body thinks the food is toxic and the cells attack, making the vomiting and diarrhea happen, which causes rapid dehydration and then the shock reaction, which your Noah had initially.

    So much is still unknown about FPIES and there are so many to educate about this extremely rare disorder that only affects 1 in 100:000 kids.

    For those that are not familiar with FPIES and wish to learn more, check out http://iaffpe.org/ and http://fpiesfoundation.org/

    I hope that Noah's reactions lessen in severity as he gets older and that he is one of the 60% that outgrows this horrible disorder that rules our children's lives. My little guy is 26 months old, sill almost exclusively formula fed on Elecare Jr, and has take Prevacid daily to control his GERD and allow him to actually eat food. He is on pureed baby food because of swallowing issues that his doctors suspect are because of eosinophilic esophagitis (EoE or EE) and quite a few FPIES kids also have EoE.

    Best of luck to you and Noah and to anyone else out there whose little one is dealing with the same issues. FPIES is a life changing disorder that controls every little aspect of life from what to cook, where to eat, art supplies (many contain soy, rice, eggs, or other ingredients that many FPIES kids are allergic to), and sometimes even what soaps, lotions, toothpastes, and other hygiene products we can use for ourselves or our children.

    Take care and I'll be keeping you and Noah in my thoughts.

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  23. I have two children with FPIES. There list of triggers far outweighs their list of safe foods. My older FPIES son is 4.5 years old and my younger FPIES son is 20 months. Rice is a trigger for both my boys too. Its great to be off the formula. We are on the same formula with my youngest, Elecare Junior...but its not as expensive as you have eluded too: I think its currently $38/can. It adds up very quick though, when, like my son, that is all you eat/drink. FPIES has come a long way in the past few years, mainly in the past 18 months. Two great websites: fpiesfoundation.org and iaffpe.org. WOW, ige allergies and FPIES, you are tough mom!

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  24. The Elecare Jr was a trigger for noah because of whatever they use for the vanilla flavor. And the regular elecare is horrible. He was on a feeding tube for a few weeks when he stopped breastfeeding and refused to start again and there weren't enough foods to sustain his calories. But through very careful research and cooking with elecare and using those flavor straws, i was able to get us through that rough patch. I am constantly doing research and will continue to do more, since Noah has started to have more frequent flare ups lately. Thanks!

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  25. Ugh, even worse was that cereal in bottles don't work if its breastmilk! I don't get why so few doctors know that. Breastmilk contains enzymes that just break down the cereal and defeat the whole purpose of making it "thicker." Then you have this sort of problem on top of it. Even non-allergenic babies shouldn't have solids that early, but that just adds insult to injury :( I was lucky because my pediatrician actually knew this and when my youngest had massive reflux, she specifically said not to give her any because it wouldn't do any good.

    Oh and I'll also add-sometimes reflux is just genetic and has nothing to do with lip/tongue ties (I've actually never heard that before, interesting!). My second born had severe tongue ties but zero reflux...but then my youngest, with no tongue tie, had it horribly. But her daddy is very prone to reflux too.

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  26. I had never imagined that someone could be allergic to RICE! That is until my second child, who was exculsively breastfed, started having serious "spit up" problems. She was vomitting after every feeding. I started taking everything I could think of out of my diet: dairy, gluten, nuts, everything. Called the Ped to see what she thought. She asked if I had tried taking rice out of my diet. I hadn't because that's a typical "first food" for babies. Never even crossed my mind. So I tried it. The vomitting stopped! She was allergic to rice! I'm very thankful that we caught it when we did! Now 8 years later our daughter can eat anything we do, including rice, with no problems. After reading this I wonder what would have happened if we had not tried taking rice out.

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  27. I agree breast milk is best. However, I have 2 children and they both refused to drink my milk :( I put both boys on formula before they were a month old. My doctor also suggested that we add Rice to help keep the formula in thier bodies longer shortly after switching to formula.

    We did this and both my boys are in excellent health. I am not saying that adding rice is something everyone should try. But I do not think that not allowing it at all is the answer.

    There are many babies that are can only have soy milk. You do not find this out until after many bottle feedings of regular formula or breastm milk. An allergic reaction to anything is not know or discovered until you are subject to what you are allegric to. My youngest son was on the IRON enricched formula, but was getting sick from too mych Iron. It took me about 3 days of conitinous vomitting to realize that simply switching formula, solved this issue and he gained weight normally.

    So my point being is, if you feel rice in the bottle is something you want to do, then do it. If you gut notcies somehting is wrong after you start this, THEN STOP! No one knows your child better than you.

    Lastley, I am so very glad that you figured out the problem and resolved it. God Bless

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    Replies
    1. Angel, you're very lucky, as I was, that your children didn't have some sort of reaction. I also thickened my son's bottle with rice cereal, to help him sleep at night - I waited until he was about 4 months old, though. He's a healthy 5.5 year old now.

      My daughter wouldn't touch rice cereal. I tried - mixed it with purees, breastmilk, and even tried juice. She would not touch it. Then I heard that rice cereal is basically sugar. Wait, what? And that's if there are no underlying reactions waiting to happen, so it's a mild concern next to Emilee's.

      We were lucky, you and I. But after reading this, and having learned of Baby Led Weaning (BLW), I won't be introducing ANY solids until my child shows interest or isn't getting enough breastmilk to fill them up. And then, I'm staying FAR AWAY from purees and cereals.

      I'm glad you were able to figure out your son was getting too much iron - so many moms get sick with prenatal pills because of the same reason. Soy milk is bad for everyone - so please make sure you check into that if you ever have the need!

      We're agreed on the point, no one knows a child better than that child's mom. And so happy your kids are doing well now!

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  28. this is amazing I wouldve never thought twice about it.. I have a 19 month old son and a 2 Month old daughter and I started my son on baby rice cereal at 1 month as well as my daughter we havent had any reactions but I've never heard of this condition It's scary to think of now of what couldve happened! Praying for Noah and your family I hope that things get a little easier for that precious baby of yours! Thanks for telling your story.

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  29. I am enjoying this blog. Its an informative topic.It took me long to read your post and I was shocked.I never thought that it is possible to have allergies in rice.Thanks for taking the time to discuss and share this with us, I for one feel strongly about it and really enjoyed learning more about this topic.


    Probiotics

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  30. It was great information...I never thought that it is possible to have allergies in rice of defective product ny.

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  31. I wonder if NAET could be of help to him:
    "NAET Success Story: The most allergic child in the world!"
    http://www.youtube.com/watch?v=Es5xrexJx1U

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  32. Thank you for your story.
    You mentioned you gave your son probiotics? What is the recommended dose for probiotics in an 18month old? My son is allergic to a lot of food as well & had been on Elecare since he was 3months. Just wondering if probiotics might help.

    Thanks.

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  33. Anonymous, I believe I gave him 1/2 tsp of probiotic powder in his bottle when he was little, and 1 tsp later.. it says how much on the jar.

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  34. Wow, I'm so sorry all this happened to you and your son. That's horrible.

    My youngest had (has?) reflux issues. I actually wasn't going to say anything to my child's pediatrician about it but my MIL (of course) kept pestering me. I asked the Dr. about it expecting that he would say she was fine like he always does. He didn't. He mentioned something about rice cereal but then remembered that i was exclusively breastfeeding so he started looking for alternatives. He mentioned medication but I said I was wondering if I had an oversupply issue. I have with four of my five nurslings. He said to go to a lactation consultant. I did. I was right. Oversupply. We worked on it. The LC actually directed me to an online article on a feeding method I had just been looking at. I also decided to see if dairy was an issue. It was. Every time I ate dairy, baby girl would spit up. I'd stop and a day or two later, so would she. I was so happy we were able to figure it out without meds or rice cereal.

    My MIL was pushing the rice cereal for several months there but I resisted. Now, after reading your story I'm so glad I did.

    You know, something I've been wondering about though- My oldest child is almost 20 years old and she used to projectile vomit as a baby. She literally shot vomit across the living room a few times. I asked her doctor back then if it was a problem and he wasn't worried about it. (Different doctor) Over the last... I don't know... maybe 8 years or so, I've been hearing *so* much more about reflux when I'd never heard of it before that. I'm really curious as to why that is? Why do so many babies get diagnosed with reflux now when maybe 10 years ago it wasn't an issue? Just something I've been wondering about.

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  35. Wow, I'm so sorry all this happened to you and your son. That's horrible.

    My youngest had (has?) reflux issues. I actually wasn't going to say anything to my child's pediatrician about it but my MIL (of course) kept pestering me. I asked the Dr. about it expecting that he would say she was fine like he always does. He didn't. He mentioned something about rice cereal but then remembered that i was exclusively breastfeeding so he started looking for alternatives. He mentioned medication but I said I was wondering if I had an oversupply issue. I have with four of my five nurslings. He said to go to a lactation consultant. I did. I was right. Oversupply. We worked on it. The LC actually directed me to an online article on a feeding method I had just been looking at. I also decided to see if dairy was an issue. It was. Every time I ate dairy, baby girl would spit up. I'd stop and a day or two later, so would she. I was so happy we were able to figure it out without meds or rice cereal.

    My MIL was pushing the rice cereal for several months there but I resisted. Now, after reading your story I'm so glad I did.

    You know, something I've been wondering about though- My oldest child is almost 20 years old and she used to projectile vomit as a baby. She literally shot vomit across the living room a few times. I asked her doctor back then if it was a problem and he wasn't worried about it. (Different doctor) Over the last... I don't know... maybe 8 years or so, I've been hearing *so* much more about reflux when I'd never heard of it before that. I'm really curious as to why that is? Why do so many babies get diagnosed with reflux now when maybe 10 years ago it wasn't an issue? Just something I've been wondering about.

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    Replies
    1. I've been reading about this and some suggest it is because we are now advised to put babies to sleep flat on their back. This makes it easier for contents to run back up. Makes sense to me. I'd take acid reflux over sids anyday.

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  36. excellent post !!!

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  37. It is mid July 2014 and my baby's pediatrician told me that cereal in the bottle helps a baby sleep better. She also believes you will spoil a child by carrying them or by reacting to their cries. She's pretty young. If you can't trust a doctor with your baby's health, who can you trust?

    Also, I get tired of hearing "blah blah blah and my baby turned out fine." I know mothers who smoked during their entire pregnancy and said this same thing. To this i say im glad you were one of the lucky ones but why should you wait until the damage is done to worry? It will save a lot of pain and regret to stop being stubborn and at least consider the alternative for the sake of your baby. Thank you for the story.

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    1. You need a new pediatrician. She sounds dangerous.

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  38. If the diarrhea has led to dehydration what should be the first treatment to be done?

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  39. So sorry to hear about his allergy ordeal! I know well the dark eye look...my middle toddler has chronic-form fpies to about 10-11 foods, mostly fruits, but also weird things like chocolate. I was lucky and had an immediate diagnosis. Flies really needs to become more known to PEDs and ER people, because not only is it becoming more common, but the devastation wreaked on children's body from not being properly diagnosed in time would be avoided. And PEDs should know better in this day and age than "no one is allergic to rice.". Thanks so much for helping to get the word out by sharing your story!

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  40. Thank you for sharing your story. I am wandering if you or anyone in this post has a child diagnosed with gastroparesis or EOE? Our now 2 yr old twin boys were born at 24 weeks gestation. One of my son's required rice cereal in his feeding tube in the NICU at 1 month old to decrease reflux. After a couple weeks it was decided that the rice cereal was constipating him so he was given Oatmeal cereal instead. He received Oatmeal cereal in his ng tube for the entire 4 months he was in the NICU and then continued to require Oatmeal cereal mixed in his bottle feedings of breast milk once he could take food in orally because of the continued reflux and aspirations issues. The GERD seemed to completely go away at 14 months of age once we switched to a broken down protein formula (Allimentum). No vomiting for 6 months to the point where we were ready to try going off his zantac and prevacid. We had even reintroduced a blended diet formula and was tolerating several ounces of may pureed foods. Also, at about 18 months of age he passed his third swallow test so that he no longer required his formula to be thickened due to no longer aspirating or refluxing. Since both boys were still having difficulty transferring to solid foods due to chewing and oral preperatiof issues,they were both admitted into a special inpatient Swallowing program for 7 weeks. The same son whom had had the resolved GERD for over 6 months began vomiting about 3 weeks into the inpatient Swallowing program. They were focusing on increasing volume of feeds for weight gain (he was 2 years old and weighed 18 lbs) as well as tolerance of small amounts of soft solid foods. He was doing great and gaining weight 3 weeks into the program and then all.of a sudden began profusely vomiting. He received a gastric emptying scan and diagnosed with gastroparesis. Now, about 2 months ago he was diagnosed with Eosinophil if Esophagitis (EOE) in addition to the gastroparesis. We currently in the process of trying to figure out what foods cause his EOE. It I am feeling discouraged. He takes Periactin (an antihistamines with side effect to increase motility) and a sub therapeutic dose of the antibiotic Erythromycin ( also for motility) to help his gastroparesis and a double dose of Prevacid to help the the EOE. The difficult thing is is we are unable to tell if his vomiting is from the gastroparesis or EOE. Anyone have any experience with these diseases or heard of where either of those diseases have been misdiagnosed and really FPIES? Also, anyone know of any homeopathic ways to help these diseases? There is much information I have left out regarding my sons GI and Swallowing issues so feel free to ask questions. We did have a feeding tube placed in De ember to hell supplement and now gaining weight. So far, we have found that he has an allergy to beef, Egg whites, and turkey. I am a speech language pathologist that primarily treats adult patients with feeding disorders but this is a different animal. Typing on my phone and can't see everything I have written so please excuse grammar, spelling, no paragraphs. Haha

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  41. Thank you for sharing your story. I am wandering if you or anyone in this post has a child diagnosed with gastroparesis or EOE? Our now 2 yr old twin boys were born at 24 weeks gestation. One of my son's required rice cereal in his feeding tube in the NICU at 1 month old to decrease reflux. After a couple weeks it was decided that the rice cereal was constipating him so he was given Oatmeal cereal instead. He received Oatmeal cereal in his ng tube for the entire 4 months he was in the NICU and then continued to require Oatmeal cereal mixed in his bottle feedings of breast milk once he could take food in orally because of the continued reflux and aspirations issues. The GERD seemed to completely go away at 14 months of age once we switched to a broken down protein formula (Allimentum). No vomiting for 6 months to the point where we were ready to try going off his zantac and prevacid. We had even reintroduced a blended diet formula and was tolerating several ounces of may pureed foods. Also, at about 18 months of age he passed his third swallow test so that he no longer required his formula to be thickened due to no longer aspirating or refluxing. Since both boys were still having difficulty transferring to solid foods due to chewing and oral preperatiof issues,they were both admitted into a special inpatient Swallowing program for 7 weeks. The same son whom had had the resolved GERD for over 6 months began vomiting about 3 weeks into the inpatient Swallowing program. They were focusing on increasing volume of feeds for weight gain (he was 2 years old and weighed 18 lbs) as well as tolerance of small amounts of soft solid foods. He was doing great and gaining weight 3 weeks into the program and then all.of a sudden began profusely vomiting. He received a gastric emptying scan and diagnosed with gastroparesis. Now, about 2 months ago he was diagnosed with Eosinophil if Esophagitis (EOE) in addition to the gastroparesis. We currently in the process of trying to figure out what foods cause his EOE. It I am feeling discouraged. He takes Periactin (an antihistamines with side effect to increase motility) and a sub therapeutic dose of the antibiotic Erythromycin ( also for motility) to help his gastroparesis and a double dose of Prevacid to help the the EOE. The difficult thing is is we are unable to tell if his vomiting is from the gastroparesis or EOE. Anyone have any experience with these diseases or heard of where either of those diseases have been misdiagnosed and really FPIES? Also, anyone know of any homeopathic ways to help these diseases? There is much information I have left out regarding my sons GI and Swallowing issues so feel free to ask questions. We did have a feeding tube placed in De ember to hell supplement and now gaining weight. So far, we have found that he has an allergy to beef, Egg whites, and turkey. I am a speech language pathologist that primarily treats adult patients with feeding disorders but this is a different animal. Typing on my phone and can't see everything I have written so please excuse grammar, spelling, no paragraphs. Haha

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  42. Why didn't you just take him off the cereal follow your instinct. Those doctors dont own your son. He is your kid

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