FOOD FOR FPIES
About Me and This Blog:
This page is dedicated to bringing together families with a collection of all inclusive family friendly foods and recipies in one place to make them easy to find. My hope is that this blog helps your fpies kiddos feel more included in meal time and have more food and texture options. I will try my best to give at least a couple ingredient substitution options for foods that my be a struggle to pass if i can. I have asked my fellow FPIES families to send me some of their favorite recipies that are easy to manipulate and substitute ingredients in case they’re not all safes for others kiddos. Any recipies sent to me from others will be noted who shared it and the site who originally posted it so credit is given where credit is due. Also that way, readers can can see recipies before any modifications if they’d like.
I hope to eventually be able to add on to this site with fpies friendly activities and documents like the pass/fail ratio charts, helpful printouts, and any additional helpful info that may come up down the line. I will eventually add pages to this site for ADHD/ASD/SPD/behavioral diets, also fibromyalgia/rheumatoid diets, and digestive health. I would like to add a category for the wordy life posts and somewhere to talk about medications and vitamins/supplements/probiotics. I am relatively new to this blogging thing so please bear with me as i develop this site and hopefully make it what i envision.
I am a 33 year old stay home mom from the Seattle area. I grew up with ADD, some mild skin sensitivities, Asthma, a couple rather mild IGe allergies, and some GI/digestive difficulties that i’ve had to work my life around. All of which have stuck around into adulthood, except the ADD morphed into Adult ADHD in highschool and i now have diverticulitis and IBS. YAY ISN’T ADULTING FUN! (facepalm sarcasm). I am currently battling fibromyalgia and my dr think i may have some sort of rheumatoid condition along with it. i had my oldest child when i was 21. 7 years later i met my now husband. When my son was 8, we had my daughter who is now 4 years old. When she was 3-4 months old we saw her first FPIES reaction to dairy formula that we were trying out before her first time being babysat. I had tried as hard as i could to solely breastfeed other than food introductions but between her demand and my production we had to supplement with organic soy formula. We then didn’t see much from FPIES until she was 12 months old when most kids able to have dairy would be transitioning to whole cow milk she was transitioning to soy milk. The GI explained it to us that the soy formula was broken down enough that she wasn’t visibly reacting but it had been sensitizing her to soy. So when transitioning to soy milk the milks proteins were too direct and soy then failed. After that we started seeing foods fail left and right. When she was 5 months old my husband was sent to afghanistan for work. 3-4 months gone, 1 month home. These rotations went on for a year and a half. Learning FPIES, researching, the doctor appointments, specialists, tests, etc. It was a lot to take on when your significant other is in another country. When she was 2 years old, and my husband was finally home for good, i got pregnant with our youngest. That whole pregnancy I had this anxiety, not knowing if he would have fpies as well. If we would have to go thru that emotional hell again, if another one of our babies was going to have to suffer and struggle thru food trials. If he did end up with fpies, would it be the same level of chronic reactions as our daughter or would he have the more acute reactions that many face and end up in the hospital with shock. My only calm was knowing I wouldn’t be doing it alone because he was home now, and that we’d been thru it with our daughter and know how to navigate it this time around. The answers were YES! he too has FPIES. YES! his reactions are more severe than hers have been. YES! he has soo many more fails than she did. To complicate it more, he has food aversions and issues with textures!
My oldest child is now 12. He has ADHD,ASD,Anxiety,Depression,SPD, and possibly ODD. He also has a few IGe allergies and GI struggles. His ADHD, Anxiety, and SPD became apparent early on around the age of 2 when i then got him into therapy. I’ve tried a few diet alterations and supplementations with him that I would like to write about and continue trying out new things with him to find what works best. He is 12 and in the early teen hormonal years so many things are changing for him and proving to be a challenge. He is on medication as well as working with a team of specialists, so please no negative criticism or nay sayers. I am always open to trying new things or hearing about what has worked for you or helped… or didn’t. Even if your input isn’t directly helpful to my families needs, it may be helpful to my readers.
My daughter is 4 years old, and my youngest is almost 2years old. Both have FPIES. My daughter has more chronic heartbreaking reactions and didn’t really start to show much FPIES reactions until she as 1 year old. She had 6 major trigger foods which we avoided all direct and byproduct ingredients until retrials. Wheras my son (2yo) has shown symptoms since the moment he was born and has had more acute scary reactions. So far we’re up to about 7 or 8 passes and 8-10 fails. Then there are a few questionables that were put on the maybe/retrial list due to mild or random symptoms that aren’t severe enough to mark it a fail but not quite sure it’s from the food or a virus.
MY BEST ADVISE: have a good team of drs/specialists who all communicate with each other if you can. and go slow! As much as we may want to introduce all these foods to our little kiddos, there is nothing more heartbreaking or scary than watching our babies go thru an FPIES reaction and feeling completely helpless, thinking i should’ve gone slower and waited out that trial a while longer. The feeling of guilt, thinking you could’ve prevented a reaction or as tho its your fault is some of the worst in the world. There is nothing wrong with going slow and doing long trials to be sure. I assure you when your child fails a food IT IS NOT YOUR FAULT! they are just not ready for that food. I have taken nothing but education from FPIES, and found a community of many families who are so smart, caring, selfless and helpful, who truly care about one another.
If anyone has any recipies or info they would like to contribute or positive criticism, advise or otherwise please feel free to email me @ jillzahulk@gmail.com or send a comment my way. Thanks for reading ❤ ❤ ❤
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Food for FPIES 