Is it FPIES? So confused :( Please help!

Hi all,

I have a beautiful 6 month baby who was thriving till the episodes like FPIES started.

Here is my story:

My baby never latched on, so I have been pumping and feeding him breast milk. My plan was to stop pumping after 6 months, since it becomes very difficult for me to pump at work, and I am prone to getting clogged ducts. Every couple weeks I end up spending a lot of time trying to unclog the ducts.  To  get my baby used to the taste of formula, we give him 1-2 ounces of formula every 8-10 days.  I use Similac pro advance formula and he has taken a max of 2 ounces at one time. Since birth, he must have had the formula 10-15 times till date. There have not been any crazy throwing up episodes after the formula, as far as I can remember.

I started solids for my baby at 5.5 months. The first food I tried was avocado.  It must have been 1 tbsp of avocado mixed with breast milk. I fed it to him at 7 pm in the evening, and he was fed 6 ozs of milk at 9 pm. This went well for 2 days. I gave him banana on the third and fourth day and that was ok too. On the 5th day, I gave him avocado in the evening again and around 4-5 hours after his avocado and milk feed, he started throwing up every few minutes. This went on till he started throwing up gastric juices too. He got quite pale and was very lethargic. He had to be given some electrolytes to keep him hydrated. it took him a good 2 days to get him back to his breast milk diet (where he was drinking like before).  I waited for a week and gave him banana with breast milk, and the same vomiting episode repeated.  He did not have diarrhea but his poop was weirdly pasty and a light yellow in color, which is not what we see usually. After a week, I gave him very little pear with breast milk, and the vomiting episode repeated. Just that it was not as crazy as before (probably because the quantity was very less). 3-4 days later, we started him on earth's best oatmeal and breast milk. He took that fine for 12 days. On the 13th day, as per his doctor's suggestion (she claims he can not have FPIES), i gave him the banana again, and the vomiting episode started again 2 hours after ingesting the banana and breast milk. It has been 2 days and he is still not back to normal. He is drinking a lot lesser milk than before. His doctor still does not think he has FPIES, and has asked me to try jarred banana baby food after 3-4 days. She mentioned that it could be reflux, and jarred food being cooked and of a different consistency may not trigger the vomits.

I am really confused now. I have to stop pumping soon. He has taken 2 ounces of formula max till date. Does that mean similac pro advance formula  may not be a trigger food for him, and that he can switch to it after I stop pumping?

Should I try the jarred banana as recommended by his ped? I am very scared to see him like this Has anyone had experience where they thought it was FPIES but turned out to be reflux? My son has not had reflux with milk so far.

He had oats for 12 days, does that mean oats is a safe food?

Bananas and avocados are in the same family, but pear seems to be a different food group altogether. What foods can I try now? It hurts so much to see my baby like this

Really sorry for the long post. I am so devastated after reading about FPIES.

Thanks,

SG

 

 

 

Original Post

So, every child is different. With my daughter...we almost lost her at 3 months old due to the severity of her first reaction in the middle of the night. We had been using soy formula due to her cholic when this new Gerber formula came out advertised to help with cholic. When I say cholic I mean screaming for up to 18 hours a day. Some days I would take her to the doctors office just so someone else could hold her for a few minutes...

I tried the new formula before she went to bed after a long evening shift at work. I woke up around 2am and rushed to her bed to find her drowning in her vomit as she was unable to roll over. It wasnt until she was diagnosed...after 15 or so episodes and being hospitalized and having every test run known to man that it all clicked...she had FPIES reactions to milk products. The new formula was milk based, not soy based. Keep a journal of everything your baby eats and what time along with what time the reaction starts. My daughter would start throwing up exactly 4 hours after ingesting any kind of milk proteins and would suffer from vasovegal syncope which would then cause her to go unresponsive. The only way to successfully and safely bring her back was hospitalization with IV fluids. Her stools would look like applesauce or jelly for the next 2 to 3 days...and then she would be back to "normal" like nothing happened. 

I had to fight with her gastroenterologist until she was 14 months old. If you think that might be it, go with your gut. Get a specialist. We had to go to a neurologist, gastroenterologist, and immunologist, and then finally the allergist who diagnosed her before we got it all straightened out and knew what we were dealing with. Better to rule it out for sure than guessing. Hang in there mama! Today my little Ellie Rae is 5, and has grown out of her FPIES reactions...even tho she still wont eat or drink most milk products.

Btw, at the time my daughter was diagnosed, I had never heard of FPIES and none of her doctors had suggested it as an option. They all said it was the flu, or thought it was seizures, or megacolon, or 1000 other things. It wasnt until we went to the allergist that we finally got answers to all of our questions and no longer felt insane. 

So sorry you are dealing with this.  Every child is unique, so we can only give you insight based off our own situation.

My son with FPIES did better on baby food than real food at that age (as well as anything boiled or baked).  Feel free to delay or slow down food introduction- no need to rush.  If you are going the baby food route, I would give very little at first (volume matters).  In my opinion, I would avoid banana entirely- we did horribly with that food.  I would also avoid these common triggers- peas, green beans, sweet potatoes, squash, and poultry.

I like to use the phrase "safe for now" for foods that last a month.  Be careful not to take a "break" from any food and to keep in a good rotation or, upon reintroduction, there could be a reaction . . .

In our experience, which is a bit atypical, my son would react to formula and milks at around the 10-day mark- drinking a bottle or two a day.  I was lucky to breastfeed without problems to get around this issue.  Today he is on Neocate Splash for kiddos older than 1 and doing well on it.

Yellow, watery, popcorn looking poop was a symptom of a food fail for my son. 

Hope this helps.

Hi There! I'm coming from the other side of the FPIES journey and want to tell you not to worry, you'll make it through! I have a very healthy 7 year old who outgrew FPIES. He first exhibited symptoms when he was between 5-6 months old at the introduction of rice cereal. At 5 months, He was EBF and was a fat little guy. He started having screaming episodes and we just couldn't figure out what was going on. Colic? He also had some strange diapers. Everyone insisted that he was hungry and I should introduce solids. So I did. We started rice cereal and he had it probably 5-7 times before he reacted. His first reaction, I just thought was a really bad spit up. As in like all over me. After that it got worse and worse. It was always 2 hours after having the rice cereal. I figured it out and googled it and found FPIES. My pediatrician wouldn't listen to me. Insisted that it couldn't possibly be FPIES. I also went to a couple of pediatric allergists in the area who were less than helpful. We finally ended up going to Atlanta (2-3 hour drive for us) to see Dr. Seidu at Omni Allergy. He was awesome and very helpful! And it was good for me to talk with someone who didn't think I was a crazy mama. Most of my everyday help though came from other moms on this board and research, research, research. The mom survey on here about trigger foods was a real lifesaver for us! We were super careful about what order we tried foods in (least reactive first). And we trialed each food 7-10 days before adding anything new. I kept a journal and noted anything unusual during each trial. You have to keep all other factors constant so you can know exactly what's causing the issue. Thankfully, Our son never had any triggers other than rice. 

If I were you, I'd actually stop introduction of solids for now. Once they're sensitized to a trigger, that will cause them a problem until they grow out of it. I would especially stay away from bananas! Daniel's reactions got progressively worse (throwing up every few minutes for a couple hours after ingestion to the point of lethargy, cold clamy skin, etc). Even the tiniest amount of rice flour in a cracker would trigger a major reaction. Since our second son had FPIES, we waited to introduce solids to our other two until they were around 9 months. It didn't cause any texture issues or anything.  I would trial a formula for now so you can have something that he can get most of his nutrition from. Keep note of anything unusual that happens. That's just a suggestion

I'd also recommend finding a doctor who is knows FPIES (not just has heard of it! big difference....) and go see them. There used to be a place on here where you could post doctors. IDK if it's still here? You might also get some doctor recommendations on one of the FPIES facebook groups. If you live anywhere near Atlanta, I'd go see Dr. Seidu.

You're in the hard stage now, but I promise it does get better! It's a journey and there are lots of us who have been there or are there to help you.

Rebekah

I forgot to mention that one of the most helpful thing that Dr. Seidu did for us was to give us an ER letter explaining that if we showed up with FPIES reaction symptoms Daniel just needed IV fluids for rehydration. That relieved my mind so much. I was scared to take him in because I thought they’d do all kinds of invasive testing when we knew what was wrong with him!

fpiesmom posted:

Btw, at the time my daughter was diagnosed, I had never heard of FPIES and none of her doctors had suggested it as an option. They all said it was the flu, or thought it was seizures, or megacolon, or 1000 other things. It wasnt until we went to the allergist that we finally got answers to all of our questions and no longer felt insane. 

Thank you so much for your reply and support. I will start looking up any doctors who deal with FPIES in the area. My son's pediatrician wants to rule out reflux, so she is insisting that we try jarred banana one time. I will have to fight it out with her. 

Jess posted:

So sorry you are dealing with this.  Every child is unique, so we can only give you insight based off our own situation.

My son with FPIES did better on baby food than real food at that age (as well as anything boiled or baked).  Feel free to delay or slow down food introduction- no need to rush.  If you are going the baby food route, I would give very little at first (volume matters).  In my opinion, I would avoid banana entirely- we did horribly with that food.  I would also avoid these common triggers- peas, green beans, sweet potatoes, squash, and poultry.

I like to use the phrase "safe for now" for foods that last a month.  Be careful not to take a "break" from any food and to keep in a good rotation or, upon reintroduction, there could be a reaction . . .

In our experience, which is a bit atypical, my son would react to formula and milks at around the 10-day mark- drinking a bottle or two a day.  I was lucky to breastfeed without problems to get around this issue.  Today he is on Neocate Splash for kiddos older than 1 and doing well on it.

Yellow, watery, popcorn looking poop was a symptom of a food fail for my son. 

Hope this helps.

Thanks so much for your reply, Jess! What do you mean by baby food? Is it the baby food that you get from companies like earth's best, plum organics etc.? My son's pediatrician really thinks that I should try bought baby food instead of making it at home. I have actually already taken a break from oats. He took it well for 12 days. Now I am worried about reintroducing it.

2D's Mommy posted:

Hi There! I'm coming from the other side of the FPIES journey and want to tell you not to worry, you'll make it through! I have a very healthy 7 year old who outgrew FPIES. He first exhibited symptoms when he was between 5-6 months old at the introduction of rice cereal. At 5 months, He was EBF and was a fat little guy. He started having screaming episodes and we just couldn't figure out what was going on. Colic? He also had some strange diapers. Everyone insisted that he was hungry and I should introduce solids. So I did. We started rice cereal and he had it probably 5-7 times before he reacted. His first reaction, I just thought was a really bad spit up. As in like all over me. After that it got worse and worse. It was always 2 hours after having the rice cereal. I figured it out and googled it and found FPIES. My pediatrician wouldn't listen to me. Insisted that it couldn't possibly be FPIES. I also went to a couple of pediatric allergists in the area who were less than helpful. We finally ended up going to Atlanta (2-3 hour drive for us) to see Dr. Seidu at Omni Allergy. He was awesome and very helpful! And it was good for me to talk with someone who didn't think I was a crazy mama. Most of my everyday help though came from other moms on this board and research, research, research. The mom survey on here about trigger foods was a real lifesaver for us! We were super careful about what order we tried foods in (least reactive first). And we trialed each food 7-10 days before adding anything new. I kept a journal and noted anything unusual during each trial. You have to keep all other factors constant so you can know exactly what's causing the issue. Thankfully, Our son never had any triggers other than rice. 

If I were you, I'd actually stop introduction of solids for now. Once they're sensitized to a trigger, that will cause them a problem until they grow out of it. I would especially stay away from bananas! Daniel's reactions got progressively worse (throwing up every few minutes for a couple hours after ingestion to the point of lethargy, cold clamy skin, etc). Even the tiniest amount of rice flour in a cracker would trigger a major reaction. Since our second son had FPIES, we waited to introduce solids to our other two until they were around 9 months. It didn't cause any texture issues or anything.  I would trial a formula for now so you can have something that he can get most of his nutrition from. Keep note of anything unusual that happens. That's just a suggestion

I'd also recommend finding a doctor who is knows FPIES (not just has heard of it! big difference....) and go see them. There used to be a place on here where you could post doctors. IDK if it's still here? You might also get some doctor recommendations on one of the FPIES facebook groups. If you live anywhere near Atlanta, I'd go see Dr. Seidu.

You're in the hard stage now, but I promise it does get better! It's a journey and there are lots of us who have been there or are there to help you.

Rebekah

Thank you so much, Rebekah! I live in California, so I will have to find a doctor who understands FPIES here. My son's pediatrician is having a hard time accepting that my baby could have FPIES. It is so hard to see my baby like this. It takes him 3-4 days to get back to his regular milk intake after he ingests the trigger food. He loses some weight too in the process. He was such a chubby happy baby till we introduced solids.

Since he did ok with oatmeal for 12 days, my plan is to reintroduce it to him after 2-3 days. Fingers crossed - hopefully this does not turn out to be a trigger too. Yeah I have to start him on a formula that will work for him. He has taken an ounce or two of Similac pro advance a few times till he turned 6 months, so I a going to go with that for now, and see how he does after few days of taking that. We have had no allergies or food intolerance in the family, so I am really bummed that my baby is going through this Surprisingly, the foods that have triggered this reaction from him are not in the trigger food list. I have seen this reaction with bananas, avocados and pears. Oatmeal is the only food he ate well for 12 days. 

I am still secretly hoping and praying that it is not FPIES, but the symptoms seem to indicate otherwise. Thank you so much for your comforting words. I hope there is light at the end of this tunnel.

 

 

 

SG posted:
Jess posted:

So sorry you are dealing with this.  Every child is unique, so we can only give you insight based off our own situation.

My son with FPIES did better on baby food than real food at that age (as well as anything boiled or baked).  Feel free to delay or slow down food introduction- no need to rush.  If you are going the baby food route, I would give very little at first (volume matters).  In my opinion, I would avoid banana entirely- we did horribly with that food.  I would also avoid these common triggers- peas, green beans, sweet potatoes, squash, and poultry.

I like to use the phrase "safe for now" for foods that last a month.  Be careful not to take a "break" from any food and to keep in a good rotation or, upon reintroduction, there could be a reaction . . .

In our experience, which is a bit atypical, my son would react to formula and milks at around the 10-day mark- drinking a bottle or two a day.  I was lucky to breastfeed without problems to get around this issue.  Today he is on Neocate Splash for kiddos older than 1 and doing well on it.

Yellow, watery, popcorn looking poop was a symptom of a food fail for my son. 

Hope this helps.

Thanks so much for your reply, Jess! What do you mean by baby food? Is it the baby food that you get from companies like earth's best, plum organics etc.? My son's pediatrician really thinks that I should try bought baby food instead of making it at home. I have actually already taken a break from oats. He took it well for 12 days. Now I am worried about reintroducing it.

I meant store bought baby food. 

Hey! I am so sorry that you are struggling with introducing foods to your sweet baby! When my daughter was about 6 months I introduced oats to her and it went fine the first 2 times and then about 4 days later I gave it to her again and she had a horrible reaction about 2 1/2 hours later, profuse vomiting and diarrhea the next couple days. So I then tried rice thinking that her stomach was just sensitive and the same thing happened (only it occurred the very first time). Thankfully our pediatrician happens to have a daughter who has fpies so she recognized the signs immediately. She advised me to give my daughters tummy a rest period and to not introduce any more foods until closer to 8 months. 

If you baby has had oats for 12 days with no reaction I think you could assume that this was a safe food (although I have heard that in order to classify anything as a safe food you need to give them a 4 day break and then give it to them again and if they have no reaction then it can be deemed a safe food). 

If I were you (just my mommy opinion) I would not feed baby bananas again. It is my understanding that even the littlest amount of the food will still cause an fpies reaction so if you baby does fpies it will not matter if the food is homemade or store bought it will still cause a reaction. If I were you I would give my baby gut a rest for a month or so (if oats are a safe food I would continue to give it to them, just not introduce any new foods). 

When this was all happen with my daughter when she was 6 months old I was seriously freaked out and overwhelmed with the diagnosis and this website and the information on it really helped me... 

http://fpies.bofferding.net/our-fpies-story.html

My daughter is now 1 years old and although fpies is still a thing for her she is happy and healthy and I feel so much better about things! My best advice for you it to try and find a pediatrician or allergist who knows about fpies. Your sweet baby may just have a really bad reflux issue but if they do have fpies finding a doctor who understands fpies and doesnt just write you off is essential. 

Also if your baby has had formula off and on for months and you have never noticed a reaction I would think that it would be safe to switch fully over to it. Some babies are more sensitive to certain formulas but there is a big difference between spitting up and fpies that bring profuse vomiting. 

One more thing (trying to address all of you concerns) after my daughter has an fpies reaction it takes a couple days for her to get back to her usual eating amount. I think it can be pretty hard on their system so it takes a few days for baby to feel 100% and be interested in eating again. 

Also my daughter had always been sleeping (except for one time) when the reaction occurred. Which made me think it was reflux at first too but I think that had more to do with coincidence. It just happened that I would feed her and then an hour or so later I would lay her down for a nap.   

Danie, thank you so much for the very insightful reply!  What you said makes perfect sense to me.

I plan to reintroduce oats for my baby after couple days. He had the episode with bananas last sat, so I want to give him a few days to get back to normal. Keeping fingers crossed. I really hope oats work out for him.

After hearing from all of you, I think I am going to hold off on trying the jarred bananas. My son's pediatrician wanted me to try it this week, but I will wait out for couple months.  The priority right now is to get him to take some formula and continue with the oats if he tolerates it.

I also need to find some doctor in the Bay Area who can help me out with FPIES. I am pretty convinced that my baby has FPIES. I never saw him having reflux with my milk, so  I don't see how it can kick in after starting solids.

Thank you everyone for your replies, support and all the information. Really appreciate them. 

-Sanya

Hi SG,

To answer your question, we used store bought baby food (Gerber 2) at that age and stayed at the baby food stage for a long time- it was easier for him to digest.  Actually, he still eats some baby food, since real fruit keeps failing for us . . .  

We then transitioned slowly into food that was boiled/baked/organically processed.  We did not rush at all- he did great on mainly breastmilk (a safe formula could work as well). 

Banana was on my nutritionist's FPIES "trigger food" list, though I noticed it is not on many online lists.  Either way- my son reacts to banana whether it is fresh or in baby food form.

We also have a slow recovery time after a bad reaction- My son can have "false fails" with soft reactions as he is just sensitive to all food until he fully recovers.  It took us an entire month to recover from a fish fail this summer (I waited until he was 3 years old to try that one, since it is a common FPIES trigger for many- us included now.)

My son happens to have FPIES and reflux.  (Actually, we got the FPIES diagnosis almost right away due to very typical FPIES reactions following eating rice cereal/sweet potatoes/squash.  Reflux took longer for us to figure out, since the symptoms were more subtle.)  There is a big difference between the two reactions.  Reflux for my son does not cause atypical stools, violent vomiting, lethargy, horrible crying fits of abdominal pain, and definitely is not perfectly timed several hours after eating a specific food.  

Thanks Jess for the detailed explanation. I am pretty sure after reading this that it is not reflux for my son.  I will have to talk to his pediatrician again and see if she is able to accept that he could have FPIES.  My son has reacted to avocado and pear too, and they do not seem to be common FPIES triggers at all.  Thanks for the "soft reactions and false fails" heads up too. I am going to reintroduce oats for my son tomorrow (it has been 5 days since he had the episode with banana). I am hoping and praying that it does not turn out to be a trigger food. 

 

I would just be very careful introducing anything. After my daughters diagnosis we worked very closely with her allergist on a very strict schedule as to what we would introduce, when and how much. We didn't venture out on our own experimenting at home until she was 3. She failed her food challenge at the hospital so we just knew this was going to be her "thing" and worked with it from there. Since then she is able to come into contact with cooked milk protein, but not raw. We go for another food challenge at the hospital in 6 months. They put an IV in and everything before they even do the challenge because of how violent her reactions are and then they can react fast to reverse the seemingly immediate dehydration and syncope. I would suggest finding a doctor with a diagnosis first if you think it could be FPIES so you can work out an action plan and get a treatment plan together for when things go wrong. Know what you are dealing with fully first is my suggestion to you and what made my daughters case easier for us to cope with.

fpiesmom posted:

I would just be very careful introducing anything. After my daughters diagnosis we worked very closely with her allergist on a very strict schedule as to what we would introduce, when and how much. We didn't venture out on our own experimenting at home until she was 3. She failed her food challenge at the hospital so we just knew this was going to be her "thing" and worked with it from there. Since then she is able to come into contact with cooked milk protein, but not raw. We go for another food challenge at the hospital in 6 months. They put an IV in and everything before they even do the challenge because of how violent her reactions are and then they can react fast to reverse the seemingly immediate dehydration and syncope. I would suggest finding a doctor with a diagnosis first if you think it could be FPIES so you can work out an action plan and get a treatment plan together for when things go wrong. Know what you are dealing with fully first is my suggestion to you and what made my daughters case easier for us to cope with.

Thanks! I have still not found a doctor who is open to checking for FPIES. My son's reactions have been bad, but not so severe yet to have him taken to the ER. He keeps throwing up every 20-30 minutes for 4-5 hours but is ok accepting a spoon of pedialyte every 10 minutes or so. We finally move him to an ounce of milk couple hours after he takes in a little pedialyte. Do FPIES reactions get progressively worse? I was thinking of reintroducing very little oats tomorrow (1/2 tbsp as against 2 tbsp taken by him in the past).

I'd say do whatever you are comfortable with and feels right. My daughters reactions started out life threatening as she was so young so we were always SUPER careful. The recovery period of a couple of days at a time led to weight loss and concern so we wanted to be under direction from a physician. The doctor we finally found was at the omaha childrens hospital and was a childrens allergy specialist. It sucked it was 3 hours away but worth the answers and treatment plan we were able to develop. 

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