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!
I guess due to second child syndrome and/or the fact that my kids don’t feel the need to ever sleep at hours where I’m awake, this blog has gone almost radio silent. And when it does briefly come alive it is to bitch about allergies, which has really left a lot of delightful stories of F’s first year to go undocumented. Unless you count overposting on Instagram. So more of a relative undocumentation for kids in this era. Right, so about that. Let’s talk about F!
My baby just turned 1 and I have a lot of cliched feelings about it. In so many ways it’s been a blur because with the second you don’t have time to obsess over their every flail and coo. We’ve also had other things going on like a big move and the underlying worry that we may never eat food again. In other, yet still cliched ways, I can’t believe it’s only been a year as he feels like an integral part of our family and I barely remember a time before him. I worried so much about how we would handle two and where he would fit and what the dynamic would be like but, and I know this is yet another cliche, but he just fit right in like he was the missing piece.
The best way to describe F is that he is happy. Always always happy. He is so happy that we tell him, “You are so happy!” several times a day. B even says it to him now, I assume because we say it so much, but it’s true. He just likes everyone and everything and he totally rolls with whatever. You can wake him up out of a dead sleep, rush him into his (gasp) car seat and take him to the grocery store and he acts like you bought him a pony. It is the greatest.
With B I remember he had definite favorite things by this age. Favorite types of toys, favorite toys in every category, favorite books, favorite songs, etc. I have no idea if it’s a second kid thing or just his personality but F is not that way. Sure he likes things more than others but he mostly likes everything and really mostly just wants to play with people, or whatever B has.
He likes books and he likes being read to but more than that he likes to take the book out of your hand and throw it. Or open and close the pages. Or take it and give it back to you. He wants to move and he wants to interact. If you did have to pin him down to a favorite toy though it would without a doubt be a ball. He can entertain himself with any kind of ball for actually a really long time for a baby. He scoots it around, kicks it, throws it, plays fetch with himself, and cracks himself up. When he sees a ball, he points at it and says, “Baaaaaah!!” with the exact same intonation I would use if I saw a tiger walking down the street in high heels. That is just how in awe of these objects he is. Yes, G is quite pleased. And yes, he does like to kick them and even say, “Kick!” as he does so. He isn’t walking on his own yet though so you have to hold his hands while he dribbles around the room and that’s a little back crushing, but G is especially willing to put in the time. He has taken a few steps on his own so we expect him to be dribbling independently and shooting goals in no time.
Probably my favorite thing about F (ok one of my favorites? do I need to pick?) is how affectionate he is. I am about to compare my baby to a dog and I realize that’s weird and maybe even insulting but let’s just go with it. I am a total cat person and B is a total cat but I finally get what everyone likes about dogs. F is always always always happy to see you and greets you with smiles, hugs, and kisses and it is totally wonderful. It doesn’t matter if he hasn’t seen someone in days or minutes, the reaction is the same. It doesn’t matter if you just told him no or took something from him, he’s not mad, he just loves you.
And speaking of no, for a while I wondered if he maybe wasn’t understanding much of what we were saying because by this age B totally understood (and obeyed) nos. I’ve basically described him as the dog from Up so far who also happened to be dumb but this kid is far from it.
I mean how cute of me to assume other children have any interest in compliance. He definitely understands. When we are at the park I constantly follow him around saying, “No mouth!” He needs to learn not to eat things off the ground at the park. I know dirt won’t hurt and all that but parks are littered with Goldfish crackers and Cheerios and ending a park trip with an ER visit would be a total bummer. Anyhoo, so I tell him no mouth and he just crawls really fast away from me, turns his back to me, and eats mulch. Then he smiles or even laughs when I scramble to stop him. So yeah, he gets it he just doesn’t care. I know this is “normal” but it is outside of my experience so it still surprises me. Every kid has a way of getting you at some point or another. He’s been such a delightful and easy baby but I fear he might be a bit of a feisty toddler. Stay tuned.
There is so much more to say about F but I suppose I’m lucky I’ve gotten this far! No discussion on him is complete without touching on allergy issues, although I really wanted to actually say things about him that are NOT food related since that is not even a little bit who he is, so I will just briefly share the good news that he is eating 9 foods and doing great!
Ok, really trying to stick to F, but again the discussion can’t be complete without a mention of his soulmate, BFF, constant companion, and idol. I wondered how I’d possibly give a second kid as much attention as a first or keep giving the first as much attention as he was used to and the answer is just that I definitely don’t. People told me ahead of time that trading that attention for a sibling would be worth it and I didn’t get it but now I do. It’s worth it for them both. B has an incredibly long list of nicknames for F and they include: Chubby Chubby Choo Choo, Little Guy Spruce, Lake Washing-Finn, Chubby Chubbo, and Destructo. We don’t yet know what F will call B but I’m pretty excited about it and every single brother moment to come. I picture them getting beers together when they’re older and making fun of me and maybe even ignoring my calls as I call one and then the other, and that vision makes me strangely happy.
In conclusion, F at 1 is awesome. To know him is to love him and I can’t believe my luck that I get to do both.
G has pointed out a few times that a good proportion of my favorite memories involve me laughing at him. I was under the impression laughter was an important part of a good marriage? I also like to think at it as laughing with him, since he usually ends up laughing at me because I’m laughing so hard I can’t breathe.
So on that note, one of my favorite memories of parenting happened the other day ( Yes, it’s a fresh memory, I just already know it will be a lasting one.)
F has been sick with a list of things. It started as a GI bug which seemed fairly mild. He threw up and G didn’t tell me because he thought I would freak out about FPIES (!!??) It continued to be mild, then morphed into more of a cold with a fever. Then it morphed into kind of an exorcist screaming level type of performance, so I’m guessing ear infection? Anyhoo, because he is feeling less than his best, let’s say, I’ve been holding him in the rocker most of the night all week. It doesn’t make any sense that this works since he typically sleeps in our bed, meaning I hold him all night every night anyways. I think since he feels worse than usual he just finds it somehow more comforting that I am also more uncomfortable and not really sleeping along with him. Solidarity!
So the other night I was in there with F and G came in around midnight just to check on us. I asked him if he could scoot the recliner (we call it a rocker but it’s really this fantastic lazy boy type thing that we can’t live without) away from the wall so I could recline it fully and try to sleep. I had no idea how I thought he was going to accomplish that with the two of us in the chair but it seemed reasonable at the time. G got underneath the front of the chair to try to get at the actual base, gave it a big bear hug and a tug, and of course SCHWACK, the footrest shot out with the force of a catapult. It was pitch black so I couldn’t see but I heard G hit the ground several feet away. My entire body was shaking I was laughing so hard and I couldn’t even tame the squeals of joy. G is a large man and the vision of him flying across the nursery as if in some bar fight with the chair was too much for me. Some combination of those things woke F up but I didn’t even care because I was laughing so hard.
It was actually just what I needed after the drudgery of our nights lately so even though F and I were fully awake I felt better. Then G realized he couldn’t find his phone so he went back downstairs on a search. Eventually I called it for him. When I heard the vibration coming from inside F’s closet across the room I lost it again just picturing G being propelled so hard across the room that his phone actually flew out of his pocket. Cue giggle fits and annoyed baby.
Then just to overachieve, after I was fully reclined and had F back to sleep, G leaned in to kiss us goodnight and in so doing leaned on the top part of the recliner, tipping us back towards the wall. I can envision no other scenario in which waking up a sleeping sick baby 3 times in 15 mins would be me with anything other than blind rage. But, again, I couldn’t control my laughter.
This post wouldn’t be complete without a mention of the whole reason I feel alive enough to write it. My mom is hands down the most incredible person on Earth. She slept here to help with F because G and I just can’t hang anymore (how did we survive B’s entire first two years when it was like this most nights!!??) We handed her a screaming-bloody-murder baby at 9:30 last night and I awoke at 5:45 (!!!!!) to see them snuggled and asleep on the couch. There are no words.
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?”
We are here! All of our stuff is here! And as for the move, while I never ever want to move again, I will have to say it all went very smoothly. The last time I moved before this I did the whole try to bribe friends with beer to load the U-haul truck, which we all remember sucking, yes? This time I had the lovely experience of a full-service corporate move which was amazing. Now it was also my first move with a house full of stuff and
hoarders kids, so the increase in help more or less matched the increased level of difficulty in that regard but it was still much more painless than expected. That might have a liiiiitle something to do with the fact that we also had the incredible good fortune to have heaps of help from 3 grandparents. My mom moved with us (yay!!) and was a huge help throughout the process in addition to handling her own move. AND my mother and father-in-law stayed with us in SLC to help with the packing and prep and then flew here to help with getting the house set up. They were incredible. They accomplished in a few days what would have for sure taking me 6 months, also the kids were absolutely delighted by their presence. I think they should rent themselves out, they could make a killing.
So now we live here more or less. Everyone says it takes about a year to get settled in a place so it helps my sanity to remember that fact when I feel super unsettled. But all things considered I think we are doing pretty well! We even found a preschool we really like for B, although they can’t take him until the Fall. I’ll try to channel my inner tiger mom in the meantime to ensure he still gets into college some day.
Although we will forever be in love with our “starter home”, aka the nicest house I will ever live in for eternity, I am really liking some things about the new place. In SLC we lived on a mountain, as you do, so we had a phenomenal view and all that. Practically, however, it meant going for a run or ever walking anywhere was kind of terrible especially with a 90 lb stroller. Also we entered on the downstairs level and lived on the upstairs level because of the view. Neither of those things were super convenient or really ideal with young kids. Now we can walk to all sorts of things and I can’t tell you the joy that takes over me when we return from the grocery store and I can take 10 trips back in forth to unload the car without climbing a single flight of stairs or losing sight of the kids. Sign #432352 of old age I guess.
Speaking of old age, I was saying something to G the other day about being 33. He pointed out to me that I am actually 32 which was amazing news, I had no idea! Bonus year! All in all we are doing well.
Oh, also, for everyone who is waiting with bated breath for an allergy update (Bueller?) we have made great strides with F. I’ve figured out that he might not actually be allergic to every food on the planet just HIGHLY HIGHLY allergic to soy. We have removed every soy containing toy from his reach (stickers, crayons, puzzles, board books, wooden toys or anything with ink/pain/dye.) We have banned all soy containing food from the house (which is basically anything that comes in a package, USA USA!) We vacuum even more religiously after every meal. And voila, he is doing great. I’ve even added a few foods to my diet and he continues to do great. Fingers crossed that all of his issues before were due to his system being so irritated from a world filled with soy. (I mean he’s still also allergic for sure to dairy, rice, oat, and corn, but maybe now that his body isn’t constantly under assault he can start to tolerate some fruits and veggies for example. And maybe if he eats meat that didn’t eat soy he will be ok.) That’s probably the topic of another post but it will be 6 months before I get around to that one and I was on a roll with the positive patty news.
Nope, not another food post. I’ll try to space those out. Instead, I think I’ve figured out the perfect analogy to describe my parenting experience, and probably a lot of other people’s. To me being a mom, especially one who doesn’t “work outside the home” (<- for some reason that phrase drives me nuts) is like eating ice cream all the time. Imagine eating ice cream for every meal, every day, for several years straight. You must eat so much ice cream to survive that it is the first thing you do when you wake up in the morning and the very last thing you do even as you are falling asleep. Often times you even wake up in the middle of the night or have to stop your shower before you’re clean just to eat ice cream.
It’s the most amazing thing in the world. So sweet, and delicious, and simply out of this world. Most of the time you are struck by how lucky you are to get to thrive on this diet. In fact you feel so lucky that you find it impossible to believe that so many other people are doing this too. It doesn’t seem right that there can be such deliciousness in the world and you can’t possibly describe to others how great it is.
But then there are those times- mostly when you are still eating ice cream as you lose consciousness at the end of the day, wake to eat more several times at night, and wake up for the day in a puddle of melted ice cream- that you find yourself wishing for a salad. It’s the strangest feeling in the world to actually crave a salad! The rest of your life up until this point you ate salad all the time and it was boring, all you wanted was to be able to have ice cream. How ungrateful and guilty you feel to wish your ice cream away but you can’t help it, it’s just too much and too sweet and you need a vegetable. No one understands, except for your fellow ice cream thrivers, how you could possibly find yourself feeling this way because you have it so good. But you do. So you find a way to sneak in a bite or two of lettuce and that’s all it takes, somehow although you were just so so sick of ice cream and all you desired in the world was one second away from ice cream, now you can’t live another moment without more ice cream.
And always in the back of your mind you know that the ice cream supply won’t last forever. One day it will run out and you will be back to salads all the time while you sob your way through photo albums of you with your ice cream
Well, that was super weird right?? I’m fine, no one need worry about my sanity or stability (any more than usual) this stroke of genius just hit me in the middle of the night so I shared.
Just for fairness, here is a quick update on F’s food issues. The too long didn’t read version (TLDR) is food is just not really for him.
The longer version is the only way to know if he can tolerate a food is to try, so that is what we are doing. It turns out that just because he tolerates a food through me, it doesn’t mean he can tolerate it himself. If he can’t tolerate a food through me though, it does mean that he can’t tolerate it himself. If I give him a food directly that he was previously tolerating through me and he has a reaction to it, then he can no longer tolerate it through my milk. It’s like a fun little logic puzzle with risk/reward calculations.
The rough system I am following then is to try high risk foods through me first, and low risk foods just give directly to him. I reserve a few foods for myself that I will never give to him because I wouldn’t be able to live if I couldn’t have them anymore. (And really at this point he wouldn’t be able to live either so it’s totally selfless.) So here are our current lists:
Foods F can eat himself:
-pure olive oil soap mixed with bath water
-SLC tap water (believe it or not that is a big victory)
“Foods” F has tried himself and can’t tolerate:
-pork (We are virtually certain that pig survived on corn and soy so the ped told us to try a purely grass fed animal. Turns out you can be allergic to your food’s food. Since F has eaten grass himself that is a great sign. Yes, I’m serious that is something we’ve thought about.)
-a milimeter sized shred of paper printed with soy ink
-crumbs of various foods left behind by visitors that eat a normal diet
-Johnson’s Naturals Baby Soap
-Aveeno lotions made with soy or oat (aka all of them)
Foods that I am eating that F tolerates:
-peanut butter (yaaaaaaaay)
-prenatal vitamins (I actually skipped these for two days once and never again.)
-bananas (Anything that he can eat directly I get to have too, yay)
So that is our diet for now. It seems like it sucks but in all honesty it’s fine and survivable. If you told me day 1 this is where we would be I would’ve been depressed but it’s been a slow gradual road getting here and now I know there are kids out there who can’t eat anything and moms that can’t even successfully breastfeed on diets of just water, so we count our blessings. With B I didn’t know what was going on so I continued eating most things but in exchange I never slept. Now, with F I eat nothing but he sleeps fine. Guess which one I would choose 100000 times out of 100000? (Hint: I do not feel like I am dying at every moment of the day now and it’s fantastic.)
There are these so called hypoallergenic formulas on the market, which for a lot of people are complete lifesavers, but we think they are not a good option for us. Admittedly I’ve never actually tried so you can’t know for sure but they all have things in them that F has reacted to through my milk so not a good sign. Our pediatrician told us not to waste the time trying them and just try to get some more safe foods. For what it’s worth B can’t tolerate any of the formulas either but he does have a very long list of foods he can have so it’s possible. (Why yes it is incredibly terrifying to think what would happen to F if something were to happen to me!)
Anyhoo, that’s our story! Not very exciting but people keep asking about it, which is really nice!! Thanks friends! Also, lest anyone think he is suffering, he is not. I mean he does want to eat and doesn’t really get why we won’t share with him but he is fat and happy and developing great. But, I swear to God if one more person (especially doctor) says to me, “I mean he doesn’t look sick,” as a way to express they don’t believe he actually has all these issues I will LOSE MY MIND and refer them to the lists above. Strictly following those is why he looks healthy, thankyouverymuch.
Lately it’s move move move, get the house ready to sell, organize logistics for the movers, figure out rental cars, hotels, utilities, get rid of junk. BLAH BLAH BLAH. Things that should take an hour end up taking a day with two hangers on. But life has also been going on around all that too, and we’ve received one piece of pretty good news that certainly helps put minor logistical annoyances in perspective.
Remember B’s food issues? More or less he had a bunch of “symptoms” that doctors told us were normal for toddlers or things that could be treated in isolation. (“Oh, he’s covered in eczema? Here slather him in this cream to make it disappear, don’t worry about what’s causing it!!”) He also got every virus and illness in existence, including a lymph node infection that they treated with two different antibiotics he was allergic to. We did a few tests here and there but mostly the answer was jus,t “Eh, kids get sick a lot!” They all said he was fine while I insisted he was not until he basically stopped growing for a year and I really pushed it, then all of a sudden it was panic station 10. They put him on reflux medication as a bit of a stab in the dark. His pediatrician and allergist were suggesting things like Eosiniphilic Esophigitis (EoE) and/or FPIES. They said the only way to diagnose him was to ‘scope him’. For those lucky enough to be unfamiliar with that terminology it means general anesthesia and running a camera and a sharp thing to biopsy through both ends of his GI tract. I didn’t know how to politely say, “Umm no way in hell are we doing that to my 2/3 year old,” so instead I made it my goal to convince them he didn’t need it.
With the two suspected conditions there is this triad of a treatment team- allergist, pediatrician, and gastroenterologist. In a lot of ways no one can decide who’s on first but if anyone is, it’s the GI. She would be the one doing the scoping so ultimately she would decide if it was needed. Of course that meant she was by far the hardest one to get in to see. (Side note: when I’m at a birthday party surrounded by allergenic pizza and cupcakes it seems like my kids are the only ones with issues and then when I’m trying to book appointments with specialists it really seems like it’s a total epidemic.) We eventually had an appointment set up with the, very highly regarded and oh so hard to see, gastroenterologist so I had a timeline to somehow “fix” B before we went in there and she started getting all scopey.
By then we knew that dairy and soy were big problems so those were out. I started a detailed food diary for B and noted every morsel he ingested and every possible symptom exhibited. Talk about a mess of data to figure out. Around that time we also figured out that F (probably) had FPIES and I read more about that. The next two most likely FPIES trigger foods were rice and oat so I watched those carefully. Turns out they were also not good for B, his body was just so used to dealing with them that his symptoms were more chronic and under the radar. We just sort of went from there and kept up the journal, slowly pulling one food at a time until almost all of B’s “symptoms that weren’t symptoms” disappeared. A fun fact I learned along the way is if you pull a problem food and then reintroduce it, the reaction becomes a lot more acute. That was an unpleasant discovery, but a good way to reinforce what we were seeing was real and the changes were probably helping.
That whole stretch kind of sucked. We were constantly throwing food out, going to a million grocery stores, searching for alternatives that didn’t exist, and wondering what the hell we could all eat. It was also interesting to try to explain to a 2/3 year old why the things we used to try everything to get him to eat were now off limits. Those were some fun meltdowns.
I also joined all of these online groups for FPIES, EoE, Eosiniphilic Support, Fructose Malabsorption, etc. It was incredibly helpful, I learned tons, and it helped me put the final missing pieces together. It’s one thing to notice issues every time your kid eats rice, but another to notice issues with lemonade, apple juice, garlic, and onion and have no idea that they actually all have something in common- they are all very high fructose!
Anyhoo, the details are boring, but we finally had B doing well. Almost all of his “symptoms/not symptoms” were all of a sudden gone and he was eating like a horse. Best of all he was gaining serious weight for the first time in two years and was actually growing out of clothes. Those were fun meltdowns too, because after you’ve worn the same clothes for years it’s apparently hard to let go.
Right, getting to the point, we finally had our much awaited GI appointment last week. I explained everything to her, his entire history and how we got where we were and she listened and took notes (amazing!) Even better she had actually already read his entire file and knew his story. She asked me why we had him tested for bleeding disorders, Leukemia, Celiac, etc etc- all things I had forgotten about/blocked out- and it made me remember how long we’ve wondered what was going on and what a long road it’s been. (B was out of the room with my mom because he gets upset about all this stuff so we could speak freely.)
Eventually the GI doc concluded, just based on history and discussions, that he likely had FPIES and/or an Eosiniphilic Disorder. She said the only way to know was to do a scope….BUT then the most amazing thing happened. She said, “I just don’t see any reason to put him through that right now since he is doing so well.” She looked again at his file and all of her notes and said to me, “He was sick for so long and now he’s healthy! You made him better! Why would we want to make him sick again just to get an official diagnosis?” (We would have to feed him all of his problem foods again to induce symptoms so that the scope would actually turn up any useful information.) I thought I must be imagining things so I just sort of stared at her. Then I cried, kind of an embarrassing amount. In the end it felt more like a therapy appointment for me. All that time worrying and freaking out and feeling like I hadn’t helped him, I finally felt like maybe he was on the right track and maybe we had figured out how to keep him healthy.
In essence, whatever he has, the treatment is the same- don’t eat the foods that cause problems. He is now off the medicine and as long as he keeps to his diet he feels good (seriously, it’s a dramatic difference in his behavior and activity level!) He is eczema free, healthy, and really has no GI symptoms to speak of.
Certainly eating dairy-free, soy-free, grain-free, and low fructose is a challenge when you compare it to being able to eat everything. But when you compare it to changing your diet every week and trying to adjust and freaking out about what tests are going to be shoved down your throat (haha, get it!?), it’s a breeze. Granted we still don’t really know what’s going on and things could change down the road, but for the moment I’m feeling pretty good about where we are and how far we’ve come.
**If you are still reading, take a breather….
A few people have asked me if, now that we are moving to a bigger city with more jobs, I am planning on going back to work. That probably deserves its own post but I never seem to get around to blogging now so I will just address it briefly– No and I feel incredibly lucky to be able to make that choice. There are a lot of reasons why and this post has dragged on enough already. Basically I think there are a few jobs out there I could do well and I think there are a good number of other people who could also do them well, but those jobs will still be there later and there are good people to fill them now. I’m not convinced anyone could do this job better. We’ve finally come a long way with B but we are just getting started with F. While I may have had no clue what I was doing with B for a long time, I do feel like now I’m pretty uniquely qualified to help him. (And obviously I’m also uniquely interested in helping him, because hello, obsessive mother.) Plus, do you have any idea how effing long it takes to make your own pizza and cupcake from scratch for every birthday party so your kid doesn’t feel left out? No one has time for that, especially with a full-time job.
I have never been a big sports fan. Ok, I have never been a sports fan at all and in fact I just don’t really get it. (Although now that I have a husband who is obsessed and it pays all of our bills and keeps us well fed with organic dairy-free soy free blah blah food, I am feeling pretty good about it!) Anyways, I think Seinfeld perfectly sums up what I think is weird about sports.
To me it totally makes sense to cheer for people more than clothes. Basically I will always cheer for G and now he is wearing new clothes. That was sort of a weird introduction, yes? To cut to the chase, G has switched teams and is working for Seattle, which means we are moving there!
I have A LOT of feelings about it. So much has happened since I got to SLC. In fact pretty much every one of my adult milestones has taken place here including our engagement, earning my masters degree, marriage (ok the wedding was in DC but we lived here), buying a house, having two babies, etc. It is the literal birth place of our family. On top of all that, I can’t even think about the people we will be leaving behind without sobbing.
But, I also feel really good about Seattle. I think it could really be our kind of place. We are all on special diets, I am a total hippie now after living here (umm sleep with my kids and wear Birkenstocks just as a starting point.) One day I do want to go back to work and Seattle is a tech mecca. B only wears long sleeves year round. Oh, and B has cheered for Seattle in every sporting even for the past year or two including the Olympics and the World Cup. So I think he’s somehow known this was coming. Plus, the people there all seem so nice! And it’s beautiful! (And if it’s good enough for Edward Cullen…)
Ok I feel so much better. I’ve been waiting to share that news with everyone for a while now. Also it has a little something to do with why I can’t seem to ever post anything anymore. Between discussing this every day, getting our house ready to sell, house hunting (we found one!), and still trying to sort out all of these food issues with the kids, I just haven’t been able to get it together. Sorry to the three people who read this! I’m not abandoning the blog forever, I will hopefully get back to it.
And now more wise words from Seinfeld that can help explain why I’m thoroughly enjoying this pre-moving experience. I’m a thrower-outer. I am all of a sudden so stressed out everywhere I look and I just want to get rid of everything we own. “Throw away the crayons!! We will never color again and if we do we will just buy new crayons!!”
G is 100% a hoarder so it’s a fun little marital experiment. I pretty much want to get rid of everything and just buy it again in Seattle and he wants to keep everything we own in case the kids might want to take it to college. Seriously, he wants to keep the broken plastic sled we have in the garage in case we someday live in a place where it snows a lot again. B did make me promise we can take his tattered cardboard play house, so I think we know which end of that spectrum he falls on.
And now some pics from our family house hunting trip to our new town!
Lest anyone think I am anti-Christmas based on my last post, here is an overabundance of cheer in photos!