You know how when you haven’t talked to a friend in forever you actually just put off the call because there is too much to say and it stresses you out? No? Just me? That is how I feel right now. I’m experiencing this incredibly odd and foreign thing right now where I am awake and not only is no one touching me but no one else is awake in the house. Literally.never.happens.anymore. This is when I used to blog so I feel like I should say something but I actually can’t come up with anything. So instead I’ll share a lot of random pictures from the last however long it’s been.
I remember when G and I were fist dating and the topic of kids came up, definitely in that hypothetical I’m not talking about having kids with YOU or anything way. He said he was opposed to the idea because once you had kids your life didn’t matter anymore and it was all about theirs. I think he meant in the evolutionary sense in that you’ve passed on your genes so you’re expendable, but regardless it sounded sort of depressing.
Now I realize he was totally right, but I’m not finding it to be depressing. And that is because I, like every other suburban parent, have discovered the art of completely living through my child. Which brings me to B’s first two races.
In my defense, he is a natural runner and does it all the time on his own. He even prefers running laps at the playground to actually playing. But, still, it’s definitely time to start pressuring him to the point of completely removing any pleasure he might get from the activity.
For my birthday we did a 1000m kids trail race in Park City. I cried, it was amazing. Then this past weekend I did my first double stroller race and again found myself in embarrassing tears because it was so much fun. The fact that it was followed by a kids race in which B and F both competed did me in. I had to keep it to myself both times because nothing makes B want to do something less than knowing someone wants him to do it.
I have internal debates a lot about blogging. Am I sharing too much? Will this come back to haunt my kids later, or will they love to have this chronicle of their lives? Is it a great way to keep friends and family involved plus a great outlet for me or am I setting us up for crazy stalkers and giving the middle school kids fuel with which to mock my kids? Especially now with all this medical stuff I wonder if it’s even worse to share medical information? Am I violating their privacy? Etc etc etc. Neurotic. Mom. Guilt. Blah.
At least for now I’ve come to the conclusion that it’s worth sharing. First of all, we really need friends and family to be informed and get it and help look out for these kids. Second of all it is absolutely not something I want them to feel bad about or hide. Also, at least in preschool, allergies are posted on the wall of the classroom so I’m probably not offering any additional info here. FPIES and EoE are also such new diagnoses and so little is known that I owe 10000% of my understanding to the Internet and other moms who have been willing to over-share, so I guess I want to cyber-pay that forward. I will, however, keep the baby poop pictures between me, the pediatrician, and the entire online FPIES Facebook group.
So, with that out of the way, let’s play good news/bad news. Bad news first. We’ve discovered more triggers (allergens) for F. Quinoa and grape. I guess the good news there for everyone else is I can’t keep making quinoa jokes. More bad news: F has also had a few unexplained reactions recently. We’ve had company and had B’s birthday party (more on that soon!) so there have been tons of forbidden foods around. We’re now 2 for 2 on having people in town who eat normal food and F having unexplained reactions so we are cracking down. Food is only eaten at the table, we are vacuuming after every meal, and wiping everyone down. That’s been fun. We also think B may have chronic FPIES to a few more foods and are now doing the whole food diary thing, but let’s not drag everyone down any further right now.
Now for some good news. B had his 3 year checkup yesterday and has jumped 10 weight percentiles in the past 3 months after going on reflux medicine (PPIs). He started falling off his curve at 15 months and has been dropping or holding steady until now, so this is huge news. This EoE thing is even more confusing than FPIES and I know even less about it, so I’m also just going to dance around that for now. We are happy he’s eating!
Maybe it’s good news or just news, but everyone at the pediatrician’s office knows our entire family by name now and I’m pretty sure whenever I book an appointment they go ahead and just reserve 2 hours for me now.
K, promise the next post will be about something other than medical issues because it’s really not the most important thing in my life, that would be how awesome these kids are so I should talk about that more.
I know I’ve been doing a lot of allergy bitching here lately, but despite all of that life has been going on. And, besides all of that, life has been good!
Tomorrow my first baby turns 3. Insert here all of the cliches about how fast it’s gone by. (God, that’s all I typed and I’m already crying.) I’m so stinking proud of that kid and I love him so much that I don’t even know how to put it into words so I’ll share a couple of stories.
He is absolutely delightful and cracks me up daily. This past weekend we went to the state fair and I got the pleasure of going on all the rides with him. (“Mommy is just the right size! Daddy is too big!”) Our first one was these dinky little helicopters that went around in a circle. As the ride got going I figured out you could pull this little lever and make your helicopter go up so I told B how to do it. He was giggling with glee while making us fly and then turned to the random kid who was co-piloting our copter and very seriously explained to him, “When you pull back the throttle the helicopter goes up. I am the grown up so I know what to do!” Then right back to the glee.
I really do sometimes think he is part adult in a child’s body. He understands SO much, not just helicopter engineering, but about life in general and people and feelings. He truly does have wisdom beyond his age. Although he does have an adult sized head so maybe that’s why.
You know I can’t not mention allergies so… We are really trying to figure out what other food(s) could be causing his chronic issues so I keep asking him to tell me if something hurts him. Then later when it’s obvious that he was in pain, I’ll ask him why he didn’t tell me and he says, “Mommy I didn’t want to make you feel sad so I didn’t tell you. You feel happy when I feel happy!”
It’s not a great story and the topic sucks, but it sums up my B so well. He is sometimes a challenge and I’m pretty much constantly fretting about something with him, but then out of the blue he randomly just gut punches me with all of these emotions. Here he is, practically a baby still and hurting, and he’s worried about someone else’s feelings.
All the time he asks me, “Mommy, do you feel soooooo lucky to be my mommy?” No doubt he asks because I tell him that all the time, but I’ve never spoken truer words so I’m happy to keep saying yes.
That was a lot of all over the place rambling, but what I really meant to say was, Happy birthday B!! Let’s eat some dairy-free, soy-free, gluten-free cake!
I knew I’d pay for yesterday’s post. Pretty much as soon as I clicked “publish” we left for Whole Foods. For some odd reason, while there, I decided to read the ingredients, again, in the hemp milk I’ve been buying for B for the past 2 years. Recently there has been an uprising about the use of carrageenan in alternative milks. I don’t know why, but the battle cry is something to the effect of, “We’re all gonna die!!!” So, thanks to consumer activism (USA! USA!) manufacturers are now removing it from hemp milk, almond milk, etc. Great! Well, guess what they’re replacing it with. RICE!!! Brown Rice Syrup to be specific. F is allergic to rice. FFFFFFFFF. (Get it?)
In theory it’s fine for now because it’s B who drinks the hemp milk and not F. But after pondering a family eating strategy and carefully observing B eat for a while, it’s clear to me that I can’t regularly give B things that F can’t have. He drops food everywhere, spills his drinks, smears food on his face and then wipes it off with his sleeve, dribbles things down his shirt, crams food into the far corners of his booster seat and high chair and little chair and wherever else he can manage. And this is with good behavior when he’s not throwing things every which way. Then he runs over to his little brother and smothers him with love. He smushes his face against F’s, has his hands all over him, and just generally and adorably shares every last particle of his being and his lunch.
I really really really don’t want to have to confine B, then change his clothes and wipe him down, and immediately wipe every surface he touched then sweep and mop the floor for every meal and snack. My goal is to get him to eat not to make it miserable. I also will not and cannot discourage brotherly love so long may the (gentle) face smushing continue.
There will have to be exceptions, because F is allergic to everything, but overall I can’t regularly give B one of the things that F is majorly reactive to, especially mixed into something he’s used to having multiple times a day and carrying around the house with him freely. Hemp milk, however, has been one of his nutritional mainstays. It’s full of healthy fats and blah blah, plus even when he’s on an eating strike he will always drink it. So I can’t get rid of it. For now Silk Almond Milk is rice-free and I bought some hemp protein powder to mix into it to bump up the nutritionals.
As my friend was texting me a recipe for homemade almond milk yesterday, “just in case”, I was actually wondering at what point we will just up and move to a ranch in the middle of nowhere and live off the land. If Silk adds rice, well, that might be the tipping point for me.
Inevitably the “everything going right” sentiment is the product of everything going wrong at some point, which is definitely the case here. This past weekend, although lovely in a lot of ways (state fair! Daddy home! nice weather! long run!) was also filled with a lot of things going wrong. F had one of his worst reactions yet to, wait for it…., vaccines! And B also had his worst reaction yet to, it just keeps getting better…, hypoallergenic formula that I bought for F! So let’s just leave those things there and move on.
Today is just one of those days where things are happening right. F slept until 5:15 instead of 4, which was a nice departure from his latest normal. B ate a great breakfast and was in a great mood as a result. (He is back on his meds now which means we don’t have everything sorted out after all but at least we have a patch until we figure it out and the patch keeps him feeling good and eating.) School drop off was a breeze, and a few school moms told me their families would be at B’s upcoming party.
Also, it is early Fall here which is beyond gorgeous. It’s that kind of Fall where a jacket is needed in the morning but you can wear shorts in the afternoon so it’s just perfect and without feeling the cold death grip of Winter lurking. After dropping B off, F and I went for a 5 mile stroller run where he cooed for the first 2 miles and slept for the next 3. Allergies aside, this kid is EASY and that still blows my mind.
Now we are enjoying an afternoon at home. F is napping and B is pretend grocery shopping in the yard, dairy-free and soy-free items only! There are still a lot of hours left in the day so I better cut this off here. Yay.
Pretty much my new full time job, for the time being at least, is obsessively Googling. Well, that plus methodically going through all of our food and throwing half of it out. And then doing that again and again as we discover more problem foods. And then aimlessly wandering the grocery store aisles wondering what we will eat. But still, it’s mostly the Googling.
For maybe a month now, I’ve spent every free brain moment thinking about FPIES and every free, or even not free, hand moment searching or reading up. (Sorry fellow SLC drivers for not hitting the gas when the light turns green because I’m buried in my phone.) The one advantage to this condition/disease/whatever being so understudied is it is somewhat possible to catch yourself up and I finally feel like I’m at a point where I know a decent amount.
Although I’m well on my way to a PhD in obsessive searching from Google University, I am not a medical, or any other type, of doctor. I’m just a crazy lady who wants to help her kids and I’ve read all I can. All of this is based on my understanding of others’ understanding so it might be totally wrong. But it still represents my entire knowledge base and is essentially a book report I’ve compiled after reading the Internet from cover to cover so I thought it might be useful to someone who is new to this. Here are a few terms I’ve learned for anyone who cares:
FPIES- Stands for Food Protein Induced Entercolitis Syndrome. You pronounce it F-Pies, like pies, the food that we can’t eat.
Trigger- This is what you call a food that a kid is allergic to. Or, in other words, a food that causes a reaction. You would say B’s triggers are dairy and soy. F’s triggers are…. well, everything pretty much, but so far dairy, soy, rice, corn, egg, apple, probably oat, and probably some more.
Food trial- This is when you introduce a new food at home that your kid has never had before, either through breast milk or directly. You do it slowly and painfully, starting with a small amount, and upping the “dose” for a few days until you are sure they can tolerate it.
Oral Food Challenge- This is when you give a kid one of their known trigger foods to test if they’ve outgrown it. Typically this is done when they are several years old so odds are they might have outgrown it. It is done in a hospital setting in case the kid has a bad reaction and needs immediate medical attention. More or less you give the kid a few bites and then sit there for the next 8 or so hours waiting for the fireworks. This is something that is very far from my mind as it’s years down the road for us, but our doc is trying to find a place for us to do this that has a bed and a TV and some space to play, so that’s pretty awesome of her.
Pass- When a kid tolerates a food through a food trial or oral food challenge. It’s pretty great news.
Fail- The opposite of pass and something that sucks.
Safe food- Something that a kid can and does eat regularly without a reaction. So for example, F’s safes through breast milk are peanuts, pears, squash, potatoes, etc.
Dose dependency- Again, all of this is so understudied, but based on some research and certainly anecdotal evidence, it appears that the severity of a reaction depends on the amount of the food ingested. This is sort of a good thing in that you can sloooowly introduce a food that you’re uncertain about and in so doing hopefully avoid a really bad reaction. Whereas a bowl of rice might earn a kid a trip to the hospital, a grain of rice would hopefully “just” result in a rather unpleasant day.
Threshold- Based on the above, there seems to be a threshold for the amount of food it takes to trigger a reaction. That magic amount varies based on the different trigger foods and for each kid. Ready for the major suckfest part? The threshold can decrease with repeated exposures. So say it took me eating 2 bowls of Rice Krispies for F to vomit 4 times, next time a small handful of the cereal might produce the same results, or even worse.
Accidental exposure- This is when a kid accidentally ingests one of their triggers. Sometimes it’s a good thing! If a 3 year old with milk FPIES accidentally eats a bite of regular pizza at a birthday party, first the parents panic completely, but then if the kid doesn’t have a reaction it’s cause for a celebration and a good reason to do keep trying dairy to see if they’ve outgrown it. Now it can be bad too because of the whole decreasing threshold thing. Repeated exposure to a trigger can lower the threshold required for a reaction which is not a good thing when you have a little baby or kid who likes to eat crumbs off the floor and put everything in their mouth.
Losing a food- Sort of related to all of the above threshold, repeated exposure mumbo jumbo. This is one that blew my mind and really really blows in general. Turns out it is possible for a kid to tolerate a food through breast milk, then ingest the food themselves, have a bad reaction, and then no longer be able to tolerate that food through breast milk. So then the mom loses a food from her diet, which is probably not something she can afford to do without some heartache. A version of this also happened to us. F was tolerating corn syrup through breast milk just fine, until I did two corn trials. Now he can’t go back to tolerating corn syrup. Should be an awesome Halloween. (You know, because that is our greatest worry right now.)
TED- This is a Total Elimination Diet. It means you cut as much as you can from your diet to try to get your kid totally symptom free. If it works then you can start adding foods back in one at a time. This is what I did when I ate only potatoes, squash, bananas, pears, coconut, and peanuts. A kid can have FPIES to any food so it’s sort of a game of luck/educated guessing to pick which foods to eat. And to some degree deciding what you can survive on. Plenty of people said I was crazy for doing that which may be sort of true but I honestly felt like I had no other options. But, there is always someone who has it worse and someone who has it better, and I’ve run across a few moms who actually survived on hypoallergenic toddler formula in order to get their kid to a baseline. That is something I don’t know if I could do so those ladies earn some sort of special maternal dedication medal.
FPIES Eyes- This is when you start to look at the world like a crazy, paranoid person. Not because you are actually either of those things (somewhat debatable in my case) but because the world is all of a sudden a terrifying place. I think I’m starting to experience this. We went to the state fair this weekend and there was popcorn littered on every inch of grass. F could not be put down anywhere and I made a mental note to myself that we definitely can’t take F there once he’s crawling. Then the other day B was playing with play-doh, and by playing I mean ripping it into tiny bits and throwing it around the room. I rushed to Google the ingredients, not only to see if I needed to move F to another room, but to see if we need to rid the house of Play-doh too before F is mobile.
The Internet- Not just for cat pictures it turns out. Shannon and Sheelah, thanks for the great advice to find an FPIES Facebook group. There is one and I think they might know more than the doctors at this point.
Well after being on hold for 30 mins, waiting months, schlepping all the way to Park City, and sacrificing a goat we were able to see an allergist. He diagnosed both boys with FPIES (Food Protein Induced Entercolitis Syndrome) which is a rare kind of food allergy. Generally speaking there is chronic FPIES, where a kid is regularly ingesting their allergen(s) and is more or less chronically ill. Symptoms worsen over time until growth suffers and eventually the child appears to have a severe infection. Then there is acute FPIES where a kid ingests their allergen once and hours later experiences severe vomiting and /or diarrhea. In some cases, the reaction is so severe that it causes serious dehydration and sends the body into shock.
Lucky us, we got one in column A and one in column B. Speaking of B, he is the chronic case, but we are hopeful that we have his issues figured out now. We’ve totally eliminated all forms of dairy and soy from his diet and he seems to finally be eating and growing. Fingers crossed ever so tightly over that one. Further good news: we did have him tested for Celiac and he does not have it!
As for F…. good lord. So far we know he’s allergic to dairy, soy, rice, corn, apple, and egg. The allergist said since he has already reacted to 4 of the top 5 FPIES suspects, we might as well go ahead and consider the fifth food a no go, so add oats to our contraband list.
My head is constantly spinning over what to do about F. How do we protect him from all of those foods and still live life? What if he is one of those kids that vomits himself into shock? What are we even going to feed him? What foods do we start with? Some people say give him the foods that he’s already tolerating through breast milk since there is a good chance he won’t have a severe reaction to those. Others say definitely don’t give him foods I’m eating because if he reacts to the food itself then he won’t be able to tolerate it through breast milk any longer and I’ll have to further cut my diet. It doesn’t help that he is allergic to corn and corn is in every-fing-thing. Aaaaaaaaa.
As much as my head is spinning over F, my heart is spinning over B. How did we let this go on so long? How did I miss all the signs? My baby was so sick for so long that his body actually couldn’t grow anymore. How did I let this happen? Also, how did the doctors let this happen? He fell off his weight curve, then his height curve, a classic pattern of malnutrition, and they told us he was fine! I can’t stop replaying scenes from his babyhood where it now all seems so obvious.
So much guilt. So much angst. So much Googling. So much wine. And obviously, so much whine.
My brother and I are 6 years apart. All the psych books would tell you that basically makes us two only children as our young childhoods were basically separate and we had little in common for the first decade or two of our lives. It’s all I’ve ever known though and I really thought that having kids any closer than that was some horrible cacophony of chaos, sibling rivalry, violence, crying, and jealously. While pregnant with F I was mostly filled with dread, not about F personally, just having two fairly close.
I recognize we have about 15 years still for the whole thing to go south, and for anyone that has had two kids for longer than 4 months anything positive I say at this point is going to sound adorably naive. BUT I will have to say that so far it hasn’t been that bad. If anything, there have been more wonderful, heartwarming moments than hard ones.
Yesterday we were out shopping for back-to-school clothes (adorably hilarious concept for a toddler in year round school anyways) and both boys were in the double stroller. (For all the pearl-clutchers: we weren’t jogging or even walking fast so F’s neck was perfectly safe.) B spent the entire time holding F’s hand and talking to him. “Finn, can you see the construction workers over there?” “I love you little guy!”
This particular video that my mom captured shows B offering to rub F’s head, feet, etc. since he had fallen asleep. Don’t worry, it’s not too Pollyannaish as the video ends with B telling F not to touch his ball. Although he does say it very politely.
As with all toddlers, B loves to read the same books over and over again. Occasionally he will ask a question about he plot line, like, “Is Lisa going to buy Corduroy bear?” Whether it’s me reading, or G, or my mom, we all do the same thing. We answer something like, “I don’t know! We have to keep reading to see what happens!” Without fail, B gives us this look like, “Umm are you serious?” He knows, and we know, that yes, Lisa will go back home, empty her piggy bank, and come back to buy Corduroy.
This whole, existing in a moment in a story must be a purely adult concept. I actually think now he asks more plot questions to test our stupidity. He is astounded at hoe many times we’ve read theses stories and can’t remember what happens.