There are so many feelings that I have right now. This seems like a nightmare. 

My son, Luke, is an 18 lb, very healthy 5 month old. Exclusively breast fed until his 4 month check up. My pediatrician felt the burden of keeping up with my robust 4 month old was going to get too difficult for me. He recommended that I slowly introduce solids to his diet. He was big and healthy enough to move up to the next level of feeding. I was over joyed and excited about the fun of feeding my precious boy new foods. We started slowly. 3-5 days for each food before introducing something new. He did great for about a month. Then one night about two hours after giving him oatmeal mixed with powdered formula and green beans; he vomited. He was always a big spitter, but this was for the records! Then he kept going... Vomit....vomit....vomit. Vomiting for about a half hour, he suddenly felt cold to the touch and was pale as a ghost. We were so worried. I rushed him to the ER and he got limp and colder as I checked him in. The guy at the reception saw him changing and called the ER staff saying "you gotta get this baby back!! He is cold and white!!" They rushed him back and gave him IV fluids. Suddenly, he was fine. Pink and smiling. By then they had called the paramedics to rush him to children's hospital. When the paramedics got there, the ER Doctor said, " I swear he didn't look like this an hour ago!!" After endless GI images and a very traumatic night, we were released with the diagnosis of "some virus." 

What bothered me was no one believed me when I said he felt cold to the touch. Like a cold countertop. A virus wouldn't do this. 

Fastforward to two weeks later. We are on vacation in Charleston, SC. I hadn't really fed my little guy anything solid since the incident. I decided it was time and gave him oatmeal mixed with formula and squash. Two hours later~ he vomited. I thought, no... This can't be. It must just be spit up. But, it kept going. I was still in denial. I called my pediatrician nurse line. Surely, I didn't need to go to the ER again! I answered the question and then the nurse said, "what bothers me is the temperature and his color, it puts him in a category of anaphylaxis, let me call the attending physician."  Then, he turned white and went limp, HE WAS UNRESPONSIVE! I wasn't waiting and I called 911. The paramedics got there and one of them grabbed my baby and said to me "I'm rushing your baby to the hospital now. Do you want to ride with me?" He said it like he was saying  "I'm not sure your baby us going to make it yo the hospital." By God's infinite grace, he did. They gave him IV fluids and he was fine. I told the story about a thousand times to about 10 different doctors and nurses. I still felt like they just didn't get it. We got transferred to the children's hospital and I waited all night and day with a healthy, happy baby. What was going on??? 

What I loved about MUSC in Charleston was he medical team. About 10 different physicians were studying my son and his symptoms. Finally, after endless hours they came back with the diagnosis of FPIES. Now here I am. Scared. Uneducated and concerned. I am so glad I have found this resource. What now????

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I'm so sorry you and your LO are going through this! It's so scary to see them so unwell.

My daughter had two similar reactions to rice cereal when she was 5.5 months old. She is 15 months now, 70th percentile for weight, 92nd for height, no health issues, happy and easy-going She doesn't eat rice and other grains, but she eats a variety of fruits and vegetables, meat and dairy. She even had a cake for her birthday: almond-flour based with a strawberry-coconut frosting.

I'm trying to say that things may be ok in the end. You will get hold of what is going on. Every FPIES kid is different, but they all have a pattern and when you understand your son's pattern, you will feel more confident and you will be able to plan your lives accordingly.

I'm sure your doctors told you to avoid oats, and probably rice and other grains for now. There is no rush to introduce foods, and he is still very young, so I would take it slowly. Fruits and vegetables may well be ok for him. 

There are also many other support groups. Several on FB, but they are hard to get into - I don't know why. I'm member in one for FPIES recipes, happy to add you, pm me if you want. There is also a quite active group on Baby Center. 

 

Good luck!

I had the exact situation with my son when we stare solids. Vomit to shock acute reaction from oatmeal... He almost died twice and it was misdiagnosed as a stomach virus both times. I'm going to copy and paste some information about FPIES from an awareness post I made a while back. 

On the rarest of days (Leap Day) we celebrate Rare Diseases Day. Trent has FPIES - Food Protein Induced Enterocolitis Syndrome. Because the condition is rare, many children suffer from the symptoms undiagnosed. Spreading awareness is the best way to help. I found out about FPIES through another mom on fb. You could help another family in the same way.

FPIES is a rare food hypersensitivity that effects the gastrointestinal tract. A child with FPIES will reject random food proteins like a toxin as the food begins the digestion process. It's a relatively new diagnosis in the medical field. Very few doctors know about the condition (our pediatrician had never seen a case). Even a lot of specialists are not familiar with the condition. The cause of FPIES is unknown. The reason children react is unknown. Unlike traditional food allergies, the standard skin testing or blood testing for specific food allergens are routinely negative in FPIES patients (unless they also have an IgE allergy). That means that the foods that a child will react to are also unknown - food trial and error is the only way to find out what is safe.

There are two forms of reactions -

Chronic Reaction: a rash around the mouth and cheeks, eczema flare ups, cradle cap in infants, diarrhea (often with mucous and/or blood in the stool), and stomach pain (which causes poor sleeping habits and fussiness/colic). A child could have one, a few or all of these during an chronic reaction. The symptoms last for around 1 week.

Acute Reaction: Vomit to shock. It's pretty much how it sounds... The child will being profuse or projectile vomiting between 2 and 6 hours after eating a trigger food. The child will continue to throw up at steady intervals (about 10 minutes apart). Best case scenario, the vomiting ends on its own after a couple hours - like a horrible stomach virus or food poisoning (both common misdiagnoses). Worst case, the child will continue throwing up until they go into shock from exhaustion and rapid dehydration. The shock, in my experiences, is after about 2 or 4 hours of throwing up. My child will turn pale and gray with a rapid heart beat and becomes extremely lethargic. He starts to pass out between vomiting and is unresponsive or very hard to wake up. The delayed reaction can make the cause very hard to pin down.

The main triggers are Oats, Rice, Milk and Soy but ANY food can cause a reaction. Children that are formula fed are commonly diagnosed faster than babies who are breastfed. This is because a child will have a complete intolerance of any dairy and/or soy based formula. As soon as it's given to them, it's usually pretty clear that the formula is the cause. Breastfed babies react when you start to offer solid foods. This makes the diagnosis harder to pin down because the severe reactions are delayed. HOWEVER, many breastfed infants will have reactions through the mothers breastmilk to certain foods! Persistent projectile vomiting that is seemingly random and similar to reflux is a huge warning sign that is almost always overlooked. "Random" and severe flare-ups in skin conditions like cradle cap, the rash around the mouth and on cheeks and eczema are also early warning signs. If the mother is able to find and eliminate the trigger foods from her diet, the child will stop having all of the symptoms!

We have a few hard years ahead of us but the ultimate good news is that most kids outgrow their food hypersensitivity by 4 or 5 years old, as their stomach and digestive tract mature. Someday, he will be able to eat anything he wants and FPIES will just be a story that we tell.

If you ever know or hear about a child who is having these symptoms, please tell the parents about FPIES. Not knowing what causes the severe symptoms that FPIES presents is unbearable. Early diagnosis is vital to prevent a failure to thrive diagnosis, malnutrition, food aversion and other common complications. Thank you so much for reading this to the end - I appreciate it!

I'd suggest joining the FPIES Facebook group. https://www.facebook.com/groups/231244343581206/

Good news, most kids react to dairy and/or soy. If you've been feeding your little one formula without issues, you're probably dealing with a very mild case of FPIES. Oats and maybe a few other things to avoid. Stay positive and don't freak out about the more severe scenarios. The first few months after a diagnosis are the hardest. Learning about the condition is horrifying. Not knowing how to proceed is just as nerve wracking. You will get through this! 

Wow brings back memories! So terrifying and daunting in those early days. We actually figured out the diagnosis before the doctors did (Google) and luckily didn't end up in the ER, I'm sure that made it all worse. I just wanted to pass on that my son was the same to oats and he just recently outgrew it at 3.5 yrs. Sadly he still has FPIEs to rice, we need a little longer for that one. But hang in there, once you get a good handle on all his safe foods ( typically by 12-18 months) and get comfortable with reading and knowing all the labels at the grocery store it's pretty manageable and just becomes the norm in your house like any other allergy. The good news is that he won't have to live with it forever, just try to get him through the next few years without any accidental exposures and there will be an end in sight. Good luck! 

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**The FPIES Foundation does not provide medical advise, diagnosis, or treatment. ******THIS INFORMATION HAS NOT BEEN REVIEWED BY THE FPIES FOUNDATION'S MEDICAL ADVISORY BOARD.********* Terms of Use: http://www.thefpiesfoundation.org/index-9.html
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