I figured an update on F’s food issues was overdue but I keep not writing one because, well, it’s not superb news, but also we just keep learning new things so any update will be quickly obsolete. So keeping that in mind, here is where we stand:
We are still waiting to see a GI here but based on guidance from doctors in SLC and the general consensus amongst the FPIES community, the way this all works is not quite as straightforward as one might like. There is no absolute list of foods that F is allergic to and list of foods he can tolerate, if there were it would be as simple as just trying a billion foods until we found out which ones work and which ones don’t. Basically we/doctors think that it’s much more complex, a dark art if you will. There probably is a list of foods that F can’t tolerate no matter what, but outside of that is where it gets murky. The theory goes that once his system is too irritated from whatever offenders he’s been in contact with, he just can’t tolerate a new food, any food. If his body has time to heal, recover, and get back to normal then his chances of tolerating a new food dramatically increase. For a lot of kids, once they get through a good period of “gut rest” then they start being able to tolerate new food after new food and really get on a roll, so it looks like achieving actual extended gut rest is what we need to commit to.
For a while we thought a few foods might be ok with F, peas and bananas specifically. He had a few symptoms with them but nothing too severe so we figured that was better than nothing. Turns out that’s not really true and the symptoms for those foods got worse with time and bigger portions. I’m happy to elaborate on those symptoms for anyone who is curious but I figure for the sake of F’s middle school experience let’s not go there on this public blog. All in all we’ve tried probably 10 different foods on F directly, mostly fruits and veggies but also wheat and pork, and he hasn’t tolerated any of them so something isn’t working right.
For now we have taken him off of all solid foods and he is only breastfed. We are taking a bunch of measures to keep him from getting ahold of anything and reacting. From a general health perspective, he is doing fine, even great, which is something to be very grateful for, but he really needs to eat food eventually and we are sort of running out the clock on the whole surviving on breast milk thing. Not to mention my health and sanity, I can’t take this forever either. With those eventual goals in mind, the steps we have taken to get him healthy are:
-I am eating only coconut and peanuts (and coffee and the occasional white wine!) Let’s just not talk about that. It sucks a lot but we are running out of options so whatever. It seems like the only way to move forward is to take a temporary step back. I found out that several commercial olive oil brands are actually mixed with undisclosed soy oil which could explain why cooked veggies were sometimes troublesome and other times not. All of the fruits I was eating myself I eventually gave to him and he reacted so I can’t have those anymore either. I would love to sort it all out and expand my diet yesterday, but I really do feel time pressure to get F eating some solids before he starts to suffer nutritionally. I know I will eat again some day.
-We do not allow F to touch anything in the kitchen. We’ve gated off the entire thing, which was much easier in our new house thankfully. He can come in if he’s held or in his high chair but he can’t touch the floor, table, counter, etc.
-We keep all soy, rice, corn, and oat out of the house, no exceptions. I’d love to keep dairy out too but then we wouldn’t have any family or friends left so we make an exception there as long as it’s not in powder form. Cheese, milk, yogurt, etc. are ok but no baked goods with milk in them, for example.
-We vacuum the whole kitchen 3 times per day and vacuum the entire lower level of the house once per day.
-We’ve tried our best to remove all soy containing toys. Board books, stickers, anything printed with ink or painted with paint (yes, even Melissa and Doug) has soy in it. Either my kid is a pirhanna or all babies are eating these things and no one cares, but regardless he’s reacting. Obviously we have to strike a balance here with fairness to his brother. B is of course keeping his trains and some other things that aren’t safe for F, we just try to keep them in his room and keep an eye.
-We (try to) always watch F like a hawk. He’s also eaten toilet paper, paper towels, printer paper with soy ink, a piece of foam from the trampoline, cardboard boxes, and countless other things that are more trash than food. Because it’s America most of our trash is, however, made of corn and soy in some capacity and that is a problem. The poor kid just needs a bubble. This morning, while ignoring F for a moment in order to explain to G how stressful it is to always watch him and always worry, F was around the corner sucking on a toy traffic sign with a sticker on it that said “Yield”. I guess that’s funny?
So that is pretty extreme, but that’s where we are. On the other side of the coin, I’ve been thinking a lot lately about how to handle the rest of the child, you know the actual person and not the illness. He’s getting older and is going to start to become more aware of all this stuff and probably figure out he’s different and aging me at a record setting pace. I think the most important thing we can do is be honest with him but also act like it’s no big deal (because in the grand scheme of things it really isn’t. I’d pick this disease over thousands of others any day.) For a while I was planning on not doing a 1st birthday party for him- it seemed silly to invite a bunch of people over to the house to eat food and make crumbs that put him at risk so that we end up restraining him in his own house, and to sing to him and serve a cake he can’t eat. He is only a baby so he won’t care. But I realized he will care. He will get older and he’ll figure out we had parties for B and not for him. So I’m working on a plan for a party. We will do it out of the house, serve food that is free of his major triggers, and put a candle on something else other than a cake. We will celebrate and he will have fun!! It is only food after all and he will only think this is a big deal if we teach him that it is.
I probably should have left things there on a fairly positive note, but I feel like I should address the biggest question we get. Will he outgrow this? The answer is, of course, we have no idea. Most kids who have been studied do outgrow it, like 80-90%, and those are good odds. Most kids who have been studied, however, have one or a small handful of foods they can’t eat. There are other kids out there like F, we even have a friend here in Seattle with a similar case! But little is known about what happens long term with kids like this who are seemingly allergic to everything. It does seem very promising that they outgrow it to an extent. We really believe that F will eventually eat, we just don’t know how many foods and how old he will be when it happens. The allergist guessed he would probably start to outgrow it around school age, so 5 or 6. Meaning maybe he could have B’s diet by the time he’s in Kindergarten. I’d take that for sure! There are of course kids out there who are 5 and eating 1-2 foods, and kids out there who are 5 and making huge strides with up to 100 or more foods. Unscientifically, just speaking to other parents, it does seem like the key to making progress is keeping them from reacting, hence all of our bubble precautionary measures. At this point we have to give it a go.
Just from a personal standpoint, I feel like a lot of people focus on the fact that he will outgrow it. They ask what’s happening, I explain it, and they say, well he’ll outgrow it right? That’s great! It takes the wind right out of my complaining sails. I get that they are trying to be positive and that’s probably exactly what I’d say in their shoes too. And, again, in the grand scheme of things this really is not that huge of a deal and it’s wonderful to think he will likely outgrow it, but sometimes it does get a touch annoying. Even if we “only” deal with this for 6-8 years that is a freaking long time to take these precautions. I feel like B has been with me forever and that is twice his entire life. I don’t actually know what else I want people to say, except maybe “Well that sucks, want to go out for some peanut butter sometime?”