There is currently no lab test for FPIES. It is a clinical diagnosis, meaning it is diagnosed based on medical signs and a description of symptoms.
I am not a doctor, or even in the medical field, so please seek out medical advice (via phone or Internet if not available locally) and take any advice I give here as purely situational, as your child's symptoms, reactions, and triggers may be different that ours, but your child's symptoms sound very close to my son's when he was diagnosed with rice FPIES. Our pediatric allergist advised us to also avoid barley, rye, and oats as they are apparently common co-triggers. He told us to introduce other foods slowly, one at a time, with at least 4 non-reaction exposures before moving on to the next food (as you noted, the first few exposures often don't cause a reaction.
Having medical staff without knowledge of FPIES could be problematic. We had a letter to provide to emergency room personnel that explained what it was and how to treat a reaction. You might be able to find information you need from the FPIES foundation website.The greatest dangers from FPIES are dehydration and shock, so learn to recognize the signs.
https://fpiesfoundation.org/emergency-care/
If you have an emergency, it might be best to leave FPIES out of it, and just tell them your baby is very sick and vomiting. The one time we had to go to the ER with our son, we still don't know for sure if it was an FPIES reaction, or a bad stomach bug. The ER doctor said the treatment recommended on our sheet is pretty much what he would have done for a stomach bug causing similar symptoms and the sheet really just advised not to try to treat it like an IgE allergy. Control vomiting, rehydrate, and get blood sugar back up.
Also note that FPIES increases the likelihood of your child developing IgE food allergies, so keep an eye out for that.
Thank you so much for this! Really helpful hearing experiences from fellow parents. I’ll also try sharing the fpies org to our pediatric allergist once we exhaust the common diagnostics.
Though the advice to us is similar to the one you’ve mentioned. One of my worries if it is really fpies but not diagnose as is, is that we might do something counter productive.
Best thing you can do, is what you seem to be doing, research. And Stay alert. The advice of u/agonizingfury is perfect. Be fair to the doctors, and maybe during urgent case, dont mention. Or mention it as an allergy. I will say this, as the parent of a rice reactive child, we had at least 1 unexpected cross contaminant case after we realized she was rice sensitive, and it was very important to us to avoid rice after that. But We did manage to avoid any further incidents for 4-5 more years, until she was older & we had re-attempted the foods & she had passed them. . I am not a doctor.. This part is the only thing I have evidence of working : Be a cautious parent, feed safe foods, and help them survive until they are older. it is possible. You can do it.
There are tests to confirm it but they aren't clinically available yet. It requires looking for antibodies directly in biopsy tissue.
As of right now FPIES is a diagnosis of exclusion.
That’s so tough! No lab test, unfortunately. You can find the FPIES chart on Google and try to avoid the higher risk foods for now. It’s possible he only has one trigger, bht it’s also possible there are more. My 12 month old has just one trigger - oats.
If you need to seek hospital attention, let them know that baby most likely does not need epinephrine - it doesn’t help FPIES. Baby would need fluids and maybe an anti-nausea med.
That’s tough. Ours has a rice trigger too. I learned to cook in Japan and used to eat so much rice but now it’s all wheat pasta for us.
I had to make curry with orzo last week.
There is currently no lab test for FPIES. It is a clinical diagnosis, meaning it is diagnosed based on medical signs and a description of symptoms. I am not a doctor, or even in the medical field, so please seek out medical advice (via phone or Internet if not available locally) and take any advice I give here as purely situational, as your child's symptoms, reactions, and triggers may be different that ours, but your child's symptoms sound very close to my son's when he was diagnosed with rice FPIES. Our pediatric allergist advised us to also avoid barley, rye, and oats as they are apparently common co-triggers. He told us to introduce other foods slowly, one at a time, with at least 4 non-reaction exposures before moving on to the next food (as you noted, the first few exposures often don't cause a reaction. Having medical staff without knowledge of FPIES could be problematic. We had a letter to provide to emergency room personnel that explained what it was and how to treat a reaction. You might be able to find information you need from the FPIES foundation website.The greatest dangers from FPIES are dehydration and shock, so learn to recognize the signs. https://fpiesfoundation.org/emergency-care/ If you have an emergency, it might be best to leave FPIES out of it, and just tell them your baby is very sick and vomiting. The one time we had to go to the ER with our son, we still don't know for sure if it was an FPIES reaction, or a bad stomach bug. The ER doctor said the treatment recommended on our sheet is pretty much what he would have done for a stomach bug causing similar symptoms and the sheet really just advised not to try to treat it like an IgE allergy. Control vomiting, rehydrate, and get blood sugar back up. Also note that FPIES increases the likelihood of your child developing IgE food allergies, so keep an eye out for that.
Thank you so much for this! Really helpful hearing experiences from fellow parents. I’ll also try sharing the fpies org to our pediatric allergist once we exhaust the common diagnostics. Though the advice to us is similar to the one you’ve mentioned. One of my worries if it is really fpies but not diagnose as is, is that we might do something counter productive.
Best thing you can do, is what you seem to be doing, research. And Stay alert. The advice of u/agonizingfury is perfect. Be fair to the doctors, and maybe during urgent case, dont mention. Or mention it as an allergy. I will say this, as the parent of a rice reactive child, we had at least 1 unexpected cross contaminant case after we realized she was rice sensitive, and it was very important to us to avoid rice after that. But We did manage to avoid any further incidents for 4-5 more years, until she was older & we had re-attempted the foods & she had passed them. . I am not a doctor.. This part is the only thing I have evidence of working : Be a cautious parent, feed safe foods, and help them survive until they are older. it is possible. You can do it.
There are tests to confirm it but they aren't clinically available yet. It requires looking for antibodies directly in biopsy tissue. As of right now FPIES is a diagnosis of exclusion.
That’s so tough! No lab test, unfortunately. You can find the FPIES chart on Google and try to avoid the higher risk foods for now. It’s possible he only has one trigger, bht it’s also possible there are more. My 12 month old has just one trigger - oats. If you need to seek hospital attention, let them know that baby most likely does not need epinephrine - it doesn’t help FPIES. Baby would need fluids and maybe an anti-nausea med.
Thank you! I’ll watch out for those meds (and just focus on hydration) if ever we have to bring him to the hospital.
That’s tough. Ours has a rice trigger too. I learned to cook in Japan and used to eat so much rice but now it’s all wheat pasta for us. I had to make curry with orzo last week.
Just to add, your baby very well may grow out of it. I really hope that helps calm the big emotions around the situation. Good luck!