Hello! 7m eggs fpies. I know yogurt is not a trigger but am nervous to try any other foods before seeing our allergist. Do I just only feed yogurt in the meantime? Should I try other low risk foods in the meantime? She is ebf and her fpies reaction occurred her 3rd time having eggs.
Hello everyone. We just received an informal diagnosis of fpies to eggs from our pediatrician. She said we could see an allergist/immunologist but they will say the same thing. I’m wondering if it is still worth seeing one. Our daughter is 7m and I feel worried about introducing new foods. That was scary! Thank you.
My daughter (11 months) had an FPIES reaction on Sunday. At least I think she did, but I’m not sure what triggered her. She only ate foods that she has been eating without issue for months. At any rate, she is now refusing pretty much all solids except a brand of puffs that she loves. I’m so worried. Is this normal, and how long should I expect it to go on? I get that her stomach may still be upset, and she might need a few days. That’s fine. I’m more concerned that she’s now afraid to eat.
Mentally, I’m finding this all really hard. We were coping OK when her suspected FPIES triggers were just eggs and dairy - I avoided them, and she was doing so well with solids. It took her several months to get the hang of eating, but she had started to really love her food. On the day that she threw up, she ate oats (Cheerios) and stuff with soy and pea protein as ingredients. So now I’m scared to give her any of those things. I don’t know what made her react. I don’t know what well-tolerated food is going to become a trigger for her. And if she refuses food every time she throws up, how are we supposed to trial anything? That’s a big setback.
I’m speaking to her allergist on Monday. But when we met her in-office for the first time, she told me FPIES is “really no big deal” compared to an anaphylactic allergy. I understand what she meant, but this feels like a big deal. The uncertainty of it all - what did she react to? What food is going to become a problem after months of being ok? When will she eat again - is so brutal.
Hi all, my son has had 2 seperate fpies episodes (one to avocado and banana and a second to egg and banana, prior to this he had been eating banana for months so I initially assumed it was the avocado). Since then we have been taking it very slow with eating, today I went out to get him a lamb chop and accidentally brought home a pork chop. I cooked it and fed it to him (as a whole piece, he mostly just sucked the juice out of it) and then realized what I had done, I feel so dumb but I am so tired so I'm chalking it up to exhaustion. I still want to trial lamb since it's gentle on the tummy, could I do that tomorrow or should I get enough pork to finish out a pork trial? I'm scared I'II start lamb and by the time I get back to pork he'll have a reaction? I'm new to this so any advice is so appreciated.
She’s almost 11 months old and was diagnosed with suspected FPIES at nine months. Per our allergist’s guidance, we’ve been working our way through food trials to rule out possible triggers. I haven’t summoned the courage to test eggs and dairy, which I think are the most likely triggers, but everything else has been fine.
I could tell something was off with my baby today because she didn’t want to eat her dinner. Then at 6:30 PM, she threw up. Half an hour later she puked again, a lot, and now I’m waiting to see what happens. She seems completely fine between episodes.
The last thing she had eaten before these events, aside from breastmilk, was Cheerios. She has had them a bunch of times before and has eaten oats many times, in various forms, without vomiting. Is it possible that a well-tolerated food could suddenly become a trigger??
The only new thing she had today was vegan butter on her toast, which contains soy (eaten many times) and pea protein (she’s had peas a few times, including last night). Maybe it’s the pea protein? But she had that at 8 AM and didn’t start vomiting until more than ten hours later.
I suppose it’s possible she has a GI bug but she’s not acting sick.
I have Zofran for her - would it be reasonable to administer it if she throws up again, even if I’m not totally sure we’re dealing with an FPIES reaction?
Sorry for the many questions. I’m new to this and I hate it.
My son (6 months) had multiple reactions to oats and was diagnosed with FPIES this week. The allergists son actually has it too, so it was an easy diagnosis after hearing my son’s symptoms.
Just wondering if anyone has any advice to offer. We’re cutting all grains from his diet (or at least as much as we feasibly can, since he’s allergic to oats and the allergist said he’s likely to be allergic to others as well). I make my own baby food for him, but man that’s a lot of foods for him ti no longer be allowed.
I feel like a complete idiot. So my daughter who is 8 months already has fpies to wheat. We were introducing peanut butter and she had a reaction on her 4th exposure, she ate a little over a teaspoon of peanut butter. I stupidly did not think of potential cross contamination from us using the peanut butter jar to make sandwiches and spread it onto crackers, with spreading in the bread or crackers and then putting the knife back into the jar. My question is, how likely was her reaction due to a true peanut butter trigger or could the most likely presence of cross contaminated wheat have been enough to cause a reaction?
1.5 y/o
We had a reaction to a number of foods and managed to get over most of them (about 8 months ago). The only remaining foods are Dairy and Soy. Soy in particular causes vomiting.
We have been waiting months between exposures which seems like allot. Should we be doing more? Are we harming her by waiting too long?
Had a bad episode at 15 months after taking the paediatrician advice to try it after the first year. There reaction was mild and I had sos med handy. I just feel terrible about today. Any success stories of their kid having it outgrowm? Will my child also have a similar reaction to chicken?
Hi all! My almost 6 month old had a pretty classic FPIES reaction yesterday. He has oatmeal and peanut butter mixed, both of which he had 3+ times prior with no reaction. He had a significantly increased volume of oatmeal and that is what we are thinking the culprit was more than the PB. He projectile vomited about 3 hours later, went grey and limp, low BP etc etc. We ended up going to the ER by ambulance and it took a few hours and some IV fluids for him to perk up but he is back to himself this morning
We went to the Pediatrician who is sending us to an allergist, hoping to get an appt at the FPIES clinic at CHOP. In the meantime she encouraged us to continue introducing other allergens
My question, baby exclusively gets breast milk other than the slow intro to solids. Should I avoid oats and peanuts for now? Ped said no need and I plan to ask the allergist. But I am feeling inclined to avoid. They're both a huge part of my diet tho!
Thanks for any input!
My 10 month old has suspected fpies to dairy. He had a pretty classic reaction to cheese (first direct dairy exposure that occured accidentally) and we are waiting to see the allergist (pediatrician is trying to get an urgent referral but so far our appointment isn’t for a few more months).
He has suspected CMPA and up until this point has been breastfed (I have been dairy free since he was around 1 month). Unfortunately, my supply has significantly dropped and we’ve been supplementing with my freezer stash which is almost gone. His doctor recommend trying nutramigen and gave us a sample. She said that if he has a reaction to it, he will likely need an amino acid formula.
I’m a little nervous to try to formula and have him react since it still has milk in it. For those of you who have had babies with Fpies to dairy, have they been able to tolerate the hydrolyzed hypoallergenic formula or have they needed amino acid formula?
I wanted to poll adults with FPIES to see if anyone gets symptoms 12-18hrs after ingesting the trigger. I match FPIES symptoms except onset timeframe, which seems very long for me. I also don’t have severe pain, it’s just nausea (I know that vomiting is coming in about 3-6 hrs…), severe vomiting and diarrhea. Once it’s out of my system, I just have to sleep it off. Back to normal 24hr after nausea begins.
Just diagnosed today. Thanks for your insight!
Hi there! I have a 6-month-old daughter, who I believe may have FPIES.
Our journey began when 6-8 weeks postpartum, when I had to stop pumping and breastfeeding following a premature (36w) birth, severe tongue/lip ties (corrected but still struggled due to prematurity and small size due to being a severe IUGR baby as well)
We had switched our daughter to Kendamil and after two weeks, her diapers still looked like a breastfed baby's dirty diapers. They were very loose, watery, and filled with mucus. We then switched to Nutramigen due to suspicion of CMPA. Our daughter continued to struggle with increased reflux, large amounts of spitting up (a few ounces at a time) and her dirty diapers continued to be 100% liquid. The dirty diapers were acidic with severe diaper rash, still had mucus and signs of undigested formula. We were on that from about 2.5 months until the day of her six-month appointment last week. With the dirty diapers continuing to be mostly diarrhea combined with her spit up/vomit and reflux and development of some small amounts of eczema, I began to wonder if our daughter may have other allergies outside of the suspected CMPA.
For weeks, my gut has been saying, "I think it's corn," but one of the pediatricians in our office shut that down and didn't seem worried by any of the symptoms due to our daughter's continued weight gain. Thankfully, we saw a different pediatrician during the 6-month visit, and she was concerned and provided referrals to the children's hospital digestive health clinic. Unfortunately, they cannot see our baby until late September. At this appointment, the doctor gave us some Amino Acid formula. Our daughter drank two bottles of it before her nap. A few hours later after waking up, she projectile vomited over 6 ounces of formula, multiple times.
It was then that I also began to realize how lethargic and tired our daughter had become the past few weeks and months. She's usually very happy, but she has been more tired and not like herself. When she threw up all the amino acid formula and had a very liquidy diaper, I felt like it began to confirm my suspicions that she is allergic to corn, since the amino acid formula is primarily corn.
Since then, we switched her to Alimentum ready to feed since it is the only hypoallergenic formula that is also corn-free. She has been doing great with this formula. She has stopped spitting up and vomiting altogether, her skin is clearing up, and she is happy again. Her dirty diapers are still somewhat loose, but there is no mucus, no signs of undigested formula, and they appear to be transitioning to be firmer.
With all of this said, my gut is thinking it may be FPIES. Which, of course, has me worried to start any solids with our daughter. She has hip dysplasia as well, so she has been in a specialty brace that has prevented her from being able to sit in a high chair until now, so we hadn't started yet even though she seems ready.
Our doctor is going to try a physician-to-physician phone call to see if we can be seen sooner at the children's hospital, but I'm worried that it won't happen and we will be waiting the next three months for her appointment.
Do others have any guidance? Did anyone have a similar experience? Does anyone have any tips of advocating for our daughter, especially because I'm scared to start introducing foods before she sees the hospital team.
Any insight or personal experiences would be welcome!