I'm positive it's FPIES...do we really need a diagnosis, and how do we get one?
A question I've seen is a lot is "do we even need to see a doctor?" My personal answer is yes. The symptoms of classic FPIES are pretty clear cut. There aren't many other possible diagnoses out there that include delayed vomiting to specific foods. So once you feel you know what's going on with your child, it may be tempting to forego the official diagnosis and start trialing food on your own. Here are the reasons you should still go see a specialist and have a formal diagnosis of FPIES...
Even though I was positive it was FPIES, talking to an allergist who was OUR allergist changed everything. Family members (and my husband) were totally supportive when they were supportive but still questioning before.
My Mom runs around sweeping like crazy when we visit because she's so afraid Matthew will get a hold of something. And she makes sure there is no rice in what we eat (I'm still breastfeeding him, and Matthew reacts to rice through my milk). When my sister had to remove all dairy from her diet because her daughter reacted to dairy through her milk, we went along, but wondered about the extremes she went to in order to stay away from dairy. We (and I include myself in this) didn't understand. It seemed like she had searched on the internet and found a possible answer to what was going on with her daughter (her poop was green and frothy), but never had this confirmed by a doctor. So, I'm ashamed to say it, but I have been on the other side of this. I really believe the level of support I receive from my family is due to Matthew having a doctor giving him an official diagnosis. Without a diagnosis it leaves room for that big "IF" in people's minds, and you already have enough on your plate as an FPIES parent. Get the diagnosis and get rid of any "if's."
Also, having a good allergist is awesome. When your LO has a reaction (say to broccoli) and you call to tell the allergist and ask if your LO has to stay away from the entire cabbage family, it's nice to hear things like "let me look at the protein structures and consult with my colleagues before I answer that."
You will have to see an allergist/GI eventually to safely do an oral challenge. Finding one now at the beginning, even if it is just to confirm the diagnosis, is a great step to take toward overcoming/surviving the FPIES journey.
So...how do you go about getting your child diagnosed with FPIES?
I was pretty certain that Matthew had FPIES, and had already dealt with feeling ridiculous when bringing it up and being shot down by his pediatrician. It wasn't her fault, she had never heard of FPIES, but most doctors (even allergists and GI's) haven't. So I shopped around (we were lucky, we don't need a referral to see a specialist on our insurance). Here's my suggestion of what to do, based on my experience:Call and tell the appointment desk that you suspect your child has a rare food allergy, and that you'd like to confirm that the doctor is familiar with it before scheduling an appointment. They'll send you back to the nurse, who will either be able to say "Yes, we know what FPIES is" or "I'm not sure, can I check with the doctor and call you back?" Then either the nurse or the doctor themselves will call you back. I would ask them how many FPIES patients they have and what their procedure is when it's time to have an oral challenge in their office.
Going through these steps keeps you from wasting your time trying to educate a doctor and feel all of the embarrassment and frustration that goes along with that. Instead you're seeing a professional who is familiar with the condition and can give you an honest diagnosis, not just a guess.
The first allergist I talked to had one FPIES patient, and she sent that patient to another doctor to do oral challenges. So we called and made an appointment with the doctor that does the oral challenges (at the urging of the first allergist), since they are more familiar with FPIES and better equipped to handle the needs of my son.If there are absolutely NO doctors in your area familiar with FPIES, one really smart Mom I know sent medical journal articles to her son's pediatrician in advance, with a letter asking them doctor to look it over before her son's appointment. She gave the doctor a week to research FPIES, and at the appointment she was presently surprised to discover that the doctor had even done a little research on his own. This allowed him to make a clinical diagnosis of FPIES for her son.It's pretty hard to find a doctor who is familiar with FPIES, especially if you're not in a big city, so a LOT of FPIES parents have been nice enough to share their doctors' information to help you out. The list is still growing, but hopefully you'll find a doctor near you here. Good luck!
Even though I was positive it was FPIES, talking to an allergist who was OUR allergist changed everything. Family members (and my husband) were totally supportive when they were supportive but still questioning before.
My Mom runs around sweeping like crazy when we visit because she's so afraid Matthew will get a hold of something. And she makes sure there is no rice in what we eat (I'm still breastfeeding him, and Matthew reacts to rice through my milk). When my sister had to remove all dairy from her diet because her daughter reacted to dairy through her milk, we went along, but wondered about the extremes she went to in order to stay away from dairy. We (and I include myself in this) didn't understand. It seemed like she had searched on the internet and found a possible answer to what was going on with her daughter (her poop was green and frothy), but never had this confirmed by a doctor. So, I'm ashamed to say it, but I have been on the other side of this. I really believe the level of support I receive from my family is due to Matthew having a doctor giving him an official diagnosis. Without a diagnosis it leaves room for that big "IF" in people's minds, and you already have enough on your plate as an FPIES parent. Get the diagnosis and get rid of any "if's."
Also, having a good allergist is awesome. When your LO has a reaction (say to broccoli) and you call to tell the allergist and ask if your LO has to stay away from the entire cabbage family, it's nice to hear things like "let me look at the protein structures and consult with my colleagues before I answer that."
You will have to see an allergist/GI eventually to safely do an oral challenge. Finding one now at the beginning, even if it is just to confirm the diagnosis, is a great step to take toward overcoming/surviving the FPIES journey.
So...how do you go about getting your child diagnosed with FPIES?
I was pretty certain that Matthew had FPIES, and had already dealt with feeling ridiculous when bringing it up and being shot down by his pediatrician. It wasn't her fault, she had never heard of FPIES, but most doctors (even allergists and GI's) haven't. So I shopped around (we were lucky, we don't need a referral to see a specialist on our insurance). Here's my suggestion of what to do, based on my experience:Call and tell the appointment desk that you suspect your child has a rare food allergy, and that you'd like to confirm that the doctor is familiar with it before scheduling an appointment. They'll send you back to the nurse, who will either be able to say "Yes, we know what FPIES is" or "I'm not sure, can I check with the doctor and call you back?" Then either the nurse or the doctor themselves will call you back. I would ask them how many FPIES patients they have and what their procedure is when it's time to have an oral challenge in their office.
Going through these steps keeps you from wasting your time trying to educate a doctor and feel all of the embarrassment and frustration that goes along with that. Instead you're seeing a professional who is familiar with the condition and can give you an honest diagnosis, not just a guess.
The first allergist I talked to had one FPIES patient, and she sent that patient to another doctor to do oral challenges. So we called and made an appointment with the doctor that does the oral challenges (at the urging of the first allergist), since they are more familiar with FPIES and better equipped to handle the needs of my son.If there are absolutely NO doctors in your area familiar with FPIES, one really smart Mom I know sent medical journal articles to her son's pediatrician in advance, with a letter asking them doctor to look it over before her son's appointment. She gave the doctor a week to research FPIES, and at the appointment she was presently surprised to discover that the doctor had even done a little research on his own. This allowed him to make a clinical diagnosis of FPIES for her son.It's pretty hard to find a doctor who is familiar with FPIES, especially if you're not in a big city, so a LOT of FPIES parents have been nice enough to share their doctors' information to help you out. The list is still growing, but hopefully you'll find a doctor near you here. Good luck!
