I think I owe the Internet an update on our food situation after doing so much complaining here about that before. But I can’t manage to actually type one out so instead I’m going to just post an email I recently sent out to family. Basically I’m beyond thrilled and overjoyed with where we are because only 2 months ago I was seriously afraid he was allergic to FOOD. Basically anything not that would’ve been good news so where we are is really great news. Here is the lazy copy/pasted email!
Figured it was time for your semi-regularly scheduled Finn update. We’ve found a general care doctor, pediatric gastroenterologist, nutritionist, and allergist here in the area and Finn has now been seen by all of them.
It’s so hard for me to be brief on this topic so let me just apologize in advance. Long story short Finn is actually not allergic to every food but is unfortunately very very allergic to some foods (dairy, soy, corn, rice, oat) and those foods are very prevalent.
The good news
Finn is successfully eating a bunch of foods now with no allergic reaction whatsoever.
We keep this running score board in the kitchen.
This is HUGE for so many reasons. We/the doctors think that some, or all, of his issues tolerating foods in the past may actually have just been reactions to minute amounts of a small handful of foods (dairy, soy, corn, rice, oat, and possibly a couple others we don’t know about) as opposed to him being allergic to every food on the planet. We either mistook his earlier reactions to be reactions to the foods we were feeding him and/or his body was constantly being assaulted with small amounts of those few true allergens and that was keeping him from tolerating new foods.
Once we removed all traces of those allergens from his environment (more on how we did that later), he completely stopped having low level mystery reactions and has tolerated every single food we’ve given him. 8 new foods in a row! This would indicate that there are actually tons of foods he can eat and we are feeling very encouraged.
The other very good news here is that this almost completely confirms that he “only” has FPIES. Kids who are allergic to basically every food typically have several diagnoses. We are feeling pretty certain now that he is not one of those kids. Since FPIES is typically outgrown, at least to some extent, he has an excellent prognosis. Even in the very worst case scenario that he can never eat dairy, soy, corn, rice or oat, it is very possible to have a healthy and nutritionally complete diet without those things. Yay! (It also just so happens that Finn’s list of trouble foods lines up perfectly with Benny’s list which is somewhat convenient and definitely not a coincidence.)
Based on his symptoms up until recently, we didn’t know whether he would be one of those kids that is allergic to everything or whether he truly was just super sensitive to crumbs of certain things. Obviously both of those choices are unideal but I would prefer the latter one by a factor of approximately a billion because he can eat, grow, develop and be healthy. Also, he really loves eating so that’s pretty awesome too.
The bad news
Basically it’s not a good idea for him to even be around that small list of foods. Tiny crumbs of these things cause him to scream in pain and vomit and poop blood. The other bad news is, although we have no intention of ever testing this theory, his allergist and GI think he could very well be an acute (severe) reactor if he ever were to get ahold of even a small baby fistful of dairy/soy/rice/oat/corn.
An FPIES reaction is delayed, typically by about 2 hours after ingestion, so the allergist said if he ever does happen to ingest any measurable amount of one of those foods we should immediately drive to the nearest ER and wait it out in the parking lot. He said at Finn’s current size, once he begins to lose fluids it could get very bad very quickly and he could go into hypovolemic shock. Luckily the treatment for that is “just” IV fluids. We have a copy of a letter from his old allergist that we can provide to ER doctors in case this happens, as many docs are unfamiliar with FPIES and how to treat it. I keep a copy of it on my phone and have attached a copy here in case anyone wants to do the same.
How we are managing it
We now strictly keep all dairy, soy, rice, oat, and corn out of the house. Previously we were making a few exceptions and hoping that we could control things by only eating in the kitchen and vacuuming/hand washing after every meal, but this didn’t work. You can never get all traces of a food up and apparently he is sensitive enough that those small traces matter.
Unfortunately it’s not only food we have to worry about. Things like diapers, paper towels, toilet paper, stickers, sidewalk chalk, crayons, magazines, wooden toys, board books etc etc etc all contain one or more of his allergens. Like many things in life I guess, this all seemed incredibly daunting and overwhelming at first but has gotten easier with time and become our new normal. Now I am like the terminator and can walk into a room, scan it, and immediately identify all threats. Also, if there is ever a game show that requires contestants to list ingredients in random grocery items, I will win it.
What’s the big deal
Sure his reactions to crumbs aren’t severe but they do suck. The biggest issue is the one we’ve already dealt with, the fact that if he keeps encountering traces of his allergens he can’t eat new foods. That has many longterm consequences we’d like to avoid.
Also, it sucks for him to feel sick. He clearly is in pain when it happens. He is SUCH a happy kid for the most part and seeing him writhe and scream for hours is pretty awful. (It would be awful with a kid who was crabby too but as he is not one to complain about anything we know he is hurting.)
Each time he is exposed to a certain food his sensitivity goes up and the reaction gets a little worse. It’s easy to see where this is not desired.
Each time he is exposed to a certain food it also is likely to increase the length of time required to outgrow this. We want the outgrowing to happen ASAP.
Recently he put a single Cheerio (oat) in his mouth and didn’t swallow more than 1/8 of it at most, I don’t actually think he swallowed any but just held it on his tongue for a second before I fished it out. This resulted in a few hours of screaming, two pukes and some bad diapers. The whole reaction lasted two days. My mom even tried eating her dairy cheese outside at the park, then washing her hands before holding him, and he still got sick. Unfortunately these incidents just reinforce the fact that he really isn’t safe around those foods at all.
How you guys can help
We completely keep dairy, soy, rice, oat, and corn out of the house and for the foreseeable future we ask that everyone who comes to our house does the same.
We know it’s a pain and it sucks a lot, but right now it’s really the only way forward. It’s hard enough to keep a baby contained when we go out or to other people’s houses, much less a toddler and we really hate to have to do it. It seems inevitable that he will have some additional accidental exposures if we let him leave the house and have a mostly normal life (which is 100% necessary for everyone’s sanity) so it makes it even more important that this doesn’t happen in our house.
When we are at the park and kids start munching on goldfish crackers while going down the slide, then Finn has to be picked up and immediately removed. It sucks for everyone. Of course it’s not society’s job to protect our allergic kid, it is ours, but situations like this reinforce how important it is that he be safe to roam and explore like a normal kid in his own home.
If there is a food that you really can’t live without, just ask! We’ve probably already found a safe alternative. We already have a safe butter, cheese, plenty of wheat breads and cereals, milks, yogurts, pastas etc. Meat, eggs, fish, nuts, seeds, fruits, and veggies are all ok. Also, we do have a lot of good restaurants around, or so we are told at least, so no one has to go totally free of those foods while in town, just when in the house!
How long do we have to live without Ben and Jerry’s?
We have no idea and the doctors don’t either. There is not a lot of good data on FPIES as it’s quite understudied. However, the data that is out there suggests that about 80% of kids completely outgrow this by 1st grade. Those are pretty good odds. Also, the process happens slowly so it is possible (hopeful?) that in even less time Finn will have grown less sensitive so that he can at least be around these foods and be exposed to some crumbs even if he is unable to eat them himself. At the very least we do expect him to eventually stop trying to eat diapers and toilet paper so that will be nice.
It’s all a little bit insane but we really appreciate your understanding and willingness to learn with us as we go. I can’t tell you how great it is to finally see him eating and loving it!!! Although it sucks he’s so sensitive to some things it is far far far better than being allergic to every food. Finn is very much looking forward to sharing a meal with all of you soon!
Thanks and miss you all bunches!!!
P.S. no real need for a Benny update as he’s doing great! He gained 3 lbs between 1 and almost 3 and has now gained 6 lbs in less than a year on this new diet. Now he just has to keep catching up in growth and get stronger, which he is definitely doing! Yay!