Food Allergies · Food Allergy Family · Wrestling with Reality

On Emery, Eczema, and Allergy Tests

Dear Joey,

Before we met Emery, I wondered about him.

Mothers do this, of course–we can’t help it, nor should we. The soon-coming-child is nearly all pregnant moms can think about, really. Will this baby have your blue eyes or my own cinnamon brown ones? Will he have a temper? Will he like math? What about freckles–will he have any? And will he have all ten fingers? Will he be able to hear me ok? What if he’s deaf? Will I be able to breastfeed? Or what if he won’t take a bottle? What if he cries and won’t stop? What if he’s born with an incurable disease? Every one of these thoughts raced through my mind before we met our boy, but they were joined by another question, a question I had a feeling I already might know the answer for: Will he have food allergies?

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The first time I was pregnant, food allergies did not cross my mind. I was aware of them, in a detached sort of way, but worried about them? Not even close. Things were different the third time around, though. By then we were no longer strangers to the food allergy world, and I wondered where this third child of ours would land on the food allergy spectrum. There’s no way to tell for sure at first, of course, and so after he was born healthy and whole (and with hazel eyes, mind you) I didn’t give food allergies much thought again until his eczema just wouldn’t go away.

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His baby skin grew increasingly patchy and rough, riddled with sore, red splotches that pained me as much as they pained him. Behind his knees and around his ankles were particularly awful; they were cracked and bloody almost always. We lavished his skin with creams and salves and kept chemicals at bay, changed soaps and serums and asked the doctor what to do, but aside from gentle salves–she didn’t have much insight for us. Nothing seemed to help; his cracked skin continued to ooze and bleed. That old hunch about a food allergy returned, but I flicked it away like an annoying bug because this was an infant, and infants often have sensitive skin. I did wonder if his skin was reacting to an allergen in my milk, but his doctor didn’t seem convinced and the information I found elsewhere was inconclusive.

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It wasn’t until I gave Emery his first (and last) spoonful of yogurt that I gave this feeling inside my full attention. How could I not? It screamed See what I mean? when the hives started popping up around his mouth. It was instant, the reaction. His. Mine. Out came the Benedryl. I contacted the doctor and cried. The hives subsided quickly enough, but they were there, nevertheless–red and angry. He was six months old.

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When we took Emery to see the doctor about the incident, she offered us a blood test (easier on babies, but with an incomplete picture of said allergy) or a referral to an allergist, who she was sure would order a scratch test eventually (a more reliable form of testing, but longer and more irritating for children to endure–and not always accurate in babies). We ended up opting to put off the scratch test until Emery was a bit older. We really were only looking to confirm what we already knew to be true, really–that Emery was in fact allergic to cow’s milk.

After we got word of his positive result, I removed all milk products from my own diet to see what would happen. His eczema disappeared–not immediately, of course, but over the course of the next few weeks. If by chance I indulged in some ice cream, Emery’s itchy, scaly red splotches returned with a vengeance–and quickly. I was dairy free until I weaned him, because how could I not be?

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Since then, Emery’s been living just fine without cow’s milk–well, except that he has been to the hospital twice for emergency care after accidentally sipping from his sister’s milk cup and gnawing on my whey protein bar. But other than that, he’s been generally fine, unless he ingests a non-dairy product that happens to contain that dratted milk protein casein. Also, he couldn’t seem to tolerate sunflower seed butter either, and his reactions to it seemed to be far worse than Mia’s reactions to peanut butter.

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But–gah–the scratch test. This poor little guy has already been through so much, is deprived of so much (and is starting to feel the sting of exclusion that comes with being a food allergy kid), and while I knew we needed to take him in to get it over with, I just didn’t want to put him through it, and I think you felt that way too. We knew what the results would tell us, for the most part, and we knew the test wouldn’t be easy on him. We wondered if it really be worth it? We went through the process with Mia twice already, when she was tested for her peanut allergy, and remember how hard that was on her? So we sat on our hands and pretended it wasn’t something that mattered for our son.

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Except it does matter, and over the past few weeks we’ve started to remember why (other than the obvious). We have Sarah to thank for it. I’ve always wished to have a sister of my own, and now that I have kids that desire runs deeper. Having a stellar sister-in-law like Sarah who gladly ping-pongs kid questions back and forth with me helps because we’re on the same team, you know? Her questions about her own baby–our niece–and her suspicions and concerns about her food allergy symptoms gave us the push we needed to face the next formality in Emery’s own food allergy story. (So thank you, Sarah. We love you.)

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As expected, Emery hated the whole affair. He cried the moment the nurse called his name out across the waiting room. One look at her, and he clung to me. When she ushered us into the testing room, he wedged himself between my knees, burying his face between them and begging me through muffled tears, “Bye bye. Car. Bye bye. Car.” He knew something uncomfortable–perhaps even painful–was about to happen, and he resisted. The nurse’s kind smile was met with the distrustful scowl of an angry, confused toddler.

Goodness, I wanted to bolt. I wanted to turn around and walk that boy straight down to the car, strap him in and take him out for ice cream, a gesture that would both soothe his nerves, assure him of my love, and show that dumb allergy who’s in charge. I wanted to pretend that this wasn’t our reality, that we aren’t a food allergy family and we can go anywhere and eat anything and never have to think twice about the complications that food allergies bring to the table. But the snap of the nurse’s blue gloves bolted me back to reality. On went my brave face, out came my reassuring words, and up to heaven flew my plea to please make this all go away, and if it can’t go away, then please help it to go quickly.

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It went quickly. The nurse poked and prodded and Emery squirmed and squalled, even as I tried in vain to distract him with his favorite song. After a moment or two, he was free from my grip and distracted by books and cars and puzzles and fruit snacks. The tell-tale red splotches emerged quickly and confirmed–for the official record–what we knew to be true about him for his whole life, just about. The nurse measured and recorded the results, wiped away the pen marks and slathered cream all over his back to soothe the itch away. When they were gone, I picked that boy up and we left without much having changed.

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When we settled into the car, Emery said, “Daddy. Coffee,” nodding his head as he did so, and thus pretty much assuring me that is what would soothe him better than much else. And so, we drove across town and ordered fancy coffees for you and your team, and got a little box of apple juice for Emery too because goodness, the least I could do was get that little trooper a box of his beloved apple juice after such a challenging morning. By the time we reached you and you scooped that little shadow of yours up into a big bear hug, he seemed to have forgotten the whole ordeal.

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Me? I’m still reeling a little, to be honest. Not because it was terrifying or horrific–it wasn’t. It went pretty much the way I thought it would go. I’m just … really conflicted about it all. Saddened by it. It’s hard enough to have one kid with food allergies. It’s even harder to have two–and tougher still when they aren’t allergic to the same things. Worse when there’s another child without any food allergies (who just plain misses PB&J’s with a tall, cold glass of regular milk).  And then, when you add in my own problems with gluten? Sometimes it all makes me really emotional. This food allergy family thing? It’s hard.

I still wonder about Emery–not so much whether he will have food allergies (because clearly, we have that answer now), but I wonder how this food allergy life will shape him, how I will shape him with my own attitude toward food and feeding him. Will he be angry and bitter about it? Will my bad days paint a false picture of God’s purpose for our family? Or will not care one tiny little bit, and join with us in boasting about the goodness of God and His kindness and provision in the midst of a difficult, unwanted circumstance?

I pray it’s the latter.

Love,

Scratch

Family Life · Food Allergies

On Food Allergies and Wanting to Feel Normal

Dear Joey,

This is how food allergies make me feel: Trapped. Surly.

 

 

This is how food allergies make our kids feel: Separate. Left out.

 

Much has been said — is being said — about food allergies, and it’s no wonder: these things are getting more and more common. I read there are more of us all the time– families dealing with food allergies who find themselves fighting a battle for which they’re most likely not prepared for at all, if they’re anything like us. But the frustrating thing is: I know so few of these people. In our world, it feels like it’s just us. Alone.

When I was growing up, I knew of two people with food allergies: Tony, a cousin; and Tina, a classmate. I don’t have much memory of Tony dealing with his allergies, except for a few fragmented moments in which my Aunt mentioned how dangerous a peanut allergy can be, and how soy is in everything. I was too young to care much about what that actually meant in their day to day lives.

But I do remember a bit more about what it was like for Tina. She unabashedly asked about ingredients in whatever foods were being offered to her, and everyone took it pretty seriously. And by seriously, I mean this: people believed she had an allergy, and they did their best to keep her safe and included at the same time.

I remember her coming to our house once to spend the weekend with us once while her parents went out of town, which would quite an ordeal these days, I imagine, with the barrage of instructions and medications and half-crazed parents trying their best to stay sane while doling out instructions for the care takers (I know, because I am one of those parents). But 25 years ago, it was almost no big deal. Her mom dropped her off with Mocha Mix, Rice Krispies, and a big pot of chicken and rice soup to help offset any trouble feeding a dairy free child might be for my mom. Tina’s mom certainly didn’t insist we clear out our fridge or restrict our own consumption of milk while Tina was with us. She must have thought my mom was a reasonable person, and trusted she would take the allergy as seriously as it needed to be taken–meaning, of course, don’t feed dairy products to Tina.

Food allergies is a thing now, though, meaning more kids have them–like ours–and our society’s infrastructure has changed a bit to address the problem. Many schools are nut free; EpiPens are normal; kids wear medical alert bracelets. Even kids without an allergy of their own are at the mercy of rules set up to keep other kids safe. Like our own Addie: she had to give up peanut butter right along with us the day we found out about Mia’s allergy, and now is learning to drink vanilla almond milk because of little brother’s dairy allergy. She can’t take almond butter sandwiches to school because it’s a nut-free zone, and if we’re at a birthday party where either of the other kids can’t eat the treat provided, we make Addie skip out too.

Even so, Addie takes most of it in stride because she has a pint-sized understanding of why some foods are off limits for our family. She’s watched both her brother and sister break into hives, watched me cry and pray and give medicine, and even spent the afternoon in the ER after little brother suffered a particularly bad reaction. She may not have an allergy of her own, but her food life is lived within the parameters of what’s safe for her sister and brother to eat, and for the most part, it doesn’t bother her.

But I know it must bother other kids, other families that don’t have allergies. They’ve got to be frustrated when forced to abide by rules that are irrelevant in their own household. Like the little circle of moms at Addie’s dance class who bemoaned the fact their kids had to deal with the fallout of food allergies even though they themselves don’t have them. Just a few months ago, I overheard them saying how frustrated they are about not being able to send peanut butter sandwiches to school, and what an inconvenience it is to have to worry about potential allergens when packing their own kids lunches, or making birthday cupcakes, or bringing in candy for parties. They said things like: I mean really. Our kids shouldn’t have to suffer because they don’t have an allergy. It’s not their fault nor their responsibility. 

When I heard all this, I wanted so badly to walk up to them and say, “If your kids did have food allergies, wouldn’t you appreciate rules put in place to help keep them safe when they are out of your immediate care?” But I didn’t. I’m not brave and I feel ill-equipped for that discussion because, well, they have a point. I already feel beaten up by food allergies themselves, and I couldn’t bear the thought of trying to fight another battle.

I am thankful for the people around us who do the best they know how to be supportive and watch out for our kids, but even well-informed people make mistakes. Since starting preschool a year and a half ago, nuts have snuck their way into her classroom at least three times, the most recent of which was on the last day of preschool last year when a fellow mom made cupcakes topped with a graduation cap made out of a peanut butter cup. These things happened in a nut free school that we love and trust. Not one of those people intentionally put our daughter at risk.

I didn’t raise a stink about it. I appreciated the gesture of making sure Mia had a cupcake too, and I was right there to explain to her what the chocolate really was and why she couldn’t have one (something she used to take in stride, but is increasingly having a difficult time with). I was a little peeved, but at the whole idea that food allergies are a reality for us, and not because anyone tried to hurt Mia on purpose. Things turned out alright. Plus, I constantly beat myself up for my own lapses in judgment that have plunked our kids down in the middle of a food allergy mess. Who am I to get mad at others for genuinely trying to keep them safe and included?

Just two weeks ago, I rushed Emery to the Emergency Department after he had mistakenly gotten a hold of Mia’s empty milk cup. I should have known better than to let her drink it on the couch because Emery is getting really good at getting a hold of his sister’s stuff now.  I warned her not to let her brother get her cup, and to her credit, she did her best to put it out of his reach, but while I had my back turned for half a second, he stretched those little arms as far as he could, grabbed the cup, and took a sip of whatever was left.

I snatched the cup away, scooped him up, and kicked myself for creating this problem in the first place while I went to find the Benedryl. He’s had hives from milk before, so I wasn’t panicked, exactly. But before I knew it, his left eye started to swell, and the swelling crept down the side of his cheek, distorting his little face just enough for me to know something was different this time. I called you in a tizzy, crying and scared and very much needing you to stay on the phone with me while I used the EpiPen for the first time. You did. And after it was over, we flew to the hospital to make sure he would be alright. He was, but riddled with Benedryl, he was beside himself.

Just a week later, I gave Emery Sunflower Seed Butter, a seemingly benign food touted as a safe alternative to peanut butter. It’s safe for schools. Mia eats it happily, as does Addie. Emery showed a small sensitivity to it a few months ago, but I figured that had probably passed because these things often do, and there wasn’t any way Sunbutter could be a real problem for him, in my mind. After just about a half a teaspoon of the stuff, Emery’s body was riddled with hives that seemed to spread faster than any I’d seen before. They started on his chin, erupted on his left arm and quickly got thick and red and covered arms and tummy.

He didn’t vomit or swell or show any other sign of distress, so I gave him Benedryl and watched and waited. I admit I cried, again. Always. I can’t seem to help it when this happens. This time, though, I was upset with myself, because I knew better. Hadn’t he had a tiny reaction to this stuff a few months ago? Why did I think this time would be any different? And I was upset with the whole twisted food system that makes things more difficult on families like ours. And I prayed that the antihistamine would do it’s work quickly as I chased our crazy boy around the house. Benedryl riles him up, causing him to rage, destructive and angry, as the medicine courses through his system. When the hives finally subsided, my parents rang the doorbell, and I let my mom hug me while I fought back tears. I was spent.

I want people without food allergies to know we didn’t choose this, and we aren’t trying to be unreasonable. We don’t want to inconvenience anyone, but we also don’t know what else to do. Food allergies are inconvenient. Figuring out how to navigate this food allergy world is hard. Scouring packages, stretching dollars, trying to better understand the inexplicable. Taking risks every time we eat out. Making sure we do our best to keep our kids safe and trying not to worry when they’re out of our care. It’s a lot to handle.

I’m thankful you’re in this with me, and that we have a tribe of folks who walk beside us doing their best to look out for us, who don’t regard food allergies as a nuisance, but try their best to make us feel normal. Sometimes, all I want is to feel normal again.

Love,
Scratch

Food Allergies · Life with Littles · Motherhood · Wrestling with Reality

Tales of a Peanut Allergy and What I Learned about Being Brave

Dear Joey,

Last summer, just after Mia was re-tested for her peanut and possible tree nut allergy, we were relieved at the news that her allergy was peanut-specific, and that tree nuts would not pose a problem for her. The relief was short lived; the celebratory cashew butter we slathered on sandwiches for lunch that day caused the worst allergic reaction Mia had experienced. It turns out the cashew butter was contaminated with peanuts. I didn’t realize it, of course, and I didn’t notice the warning on the label until it was too late.

I made the girls their cashew butter and jelly sandwiches and settled them at the table to eat while I unloaded the rest of the groceries. I was distracted and I didn’t notice until at least five minutes later, maybe longer, after she had already eaten at least half of her sandwich.

Tales of a Peanut Allergy and What I Learned about Being Brave

I turned around to check on the girls and saw Mia’s face covered with hives. I rushed to her and tore her clothes off to check the rest of her body, which was covered in red-hot, blotchy hives. No swelling, but that could be moments away. She was breathing fine, but again, that could change in an instant.

As I checked her, I must have been screaming something like “Oh my gosh. Mia’s having an allergic reaction. Oh my gosh. Oh my gosh. Dear Jesus. Help. Help me. Help her! Oh my gosh. It was just cashew butter! What happened?”

I always wondered how I would respond if Mia had a serious reaction: would I be brave or would I collapse in a heap of tears, the paralyzing fear of what could happen preventing me from doing what must happen to prevent the worst possible outcome?  Turns out, my reaction was panic.

Tales of a Peanut Allergy and What I Learned about Being Brave

I have no memory of exactly what I said in those tense moments, but both girls understood what was happening. Addie began to cry and Mia just sort of stared blankly at me as she watched my emotions wrestle with my good sense. Before long, she gently said, “I sorry I had ‘lergic action, mommy.”

All I wanted to do was pull her out of her chair and hold her close to me, close enough so she would be absorbed into my own body, so it could take over and heal her. I wanted to snuggle her tight enough for her to understood just how sorry I was I let something dangerous find its way into her body. I wanted her to understand I would never hurt her on purpose, and I would take her place if I could.

Tales of a Peanut Allergy and What I Learned about Being Brave

Her simple words pierced my heart and snapped me out of paralysis, and in a split second I realized I am going to make mistakes. Even if I’m brave. Even when I’m brave. But it is what I do in the wake of those mistakes that matters most. My children will see both my successes and failures and the way I respond to them, and what they see will shape them. And so, I pushed aside my fear and took action, doing what needed to be done.

Out came the Benedryl, and the Epi Pen was at the ready. Up into my lap came Mia. Addie wasn’t far behind. We prayed. We waited. We cried. We waited some more. Mia apologized again, and Addie asked if her sister would be ok. I told her I believed she would. I shivered as the next 15 minutes passed, praying that God’s grace would cover my mistake. It did.

Tales of a Peanut Allergy and What I Learned about Being Brave

Slowly, the hives receded. Little by little, normalcy returned. When the worst was over, I checked the packaging of the cashew butter, which said, “May contain peanuts”–words that now mean, to me “avoid like the plague.”

Having a child with a peanut allergy is not such a big deal on most days. Sometimes it is frustrating (we always have to be mindful of it, which can be inconvenient, and honestly, selfishly, I really really miss peanut butter). But once in awhile, it is utterly terrifying.

I used to think being brave meant stifling the tears and being fearless in the face of adversity. Now I know being brave means not letting fear stop you from facing the thing that scares you, even if you do it in tears.

Love,
Scratch

Breakfast · Food Allergies · Life with Littles · Uncategorized

Finally Feeling Like a Parent, and Broccoli Cheese Egg Cups

Dear Joey,

Until recently, I haven’t exactly felt like a parent.

I know that I am one, clearly, since I happily live that reality every moment of every day. But just because I do all the things a parent does, does not mean I feel like a parent. I often feel like I’m still 20 years old and a little bit naive, and if I’m really honest, most of the time I’m in a bit of shock that anyone trusts me to know what I’m doing around here. What we know to be true doesn’t always feel true, I guess.

For me, a week ago, finally, I felt like a parent. Didn’t you? All because of this little girl and a long-awaited appointment to confirm our suspicions.

Calling on a friend early in the too-early morning for a last minute favor and dropping off a slightly confused little girl at her house, and meeting you in the waiting room, not fully prepared for the gravity of the news we would soon get.

Holding a scared and angry toddler as she clung to my neck and pierced me with her deep blue eyes, imploring me to make it stop.

Blowing on the welt that came screaming to the surface after the little pokes were over.

Singing silly songs with all the motions without feeling awkward or self-conscious or the least bit aware of the nurse that sat quietly in the room with us, monitoring our little girl’s progress.

Offering what little I could to appease her – crackers, water, hugs, books – as we waiting to hear what the red blotches actually meant for our daughter, for us.

Steadying my heart and keeping my cool as the doctor let us know our child is one of the statistics now, and while she may indeed outgrow her peanut allergy, she also may live with it her whole life.

The weight of my responsibility for this child, for these children, settled itself on my shoulders that day in a new way, and I felt both love and fear course through my veins in a way I’d never experienced before.

As we walked back to the car and eased that exhausted little girl into the familiarity of her car seat, I realized how fast one’s world can change. I know that sounds dramatic, perhaps even verging on hysterical, but it’s the truth. That appointment changed things.

Early this week, a full week later, I tried to put the doctor’s advice into practice:  Be prudent. Be proactive. Don’t live a life motivated by fear. But just seven short days into all this, I see how that could easily happen, and I’m struggling to figure out how to make sure it doesn’t. Fear has been whispering to me, telling me lies about how life for Mia – for all of us – is going to change for the worse, and how nothing I do will make anything better for her because bad things happen despite anyone’s best efforts. Random, cruel, horrific things that no one can foresee or stop. It plays with my mind, and I see how parents can err on the side of overbearing because they probably feel like to be anything other than crazy overprotective feels, well, wrong. Uncaring. Negligent.

But the truth is that even though all that is true (random, cruel, horrific things do happen, don’t they?), the thing fear fails to mention is that even though I’m not in control, Someone else is, and to be overprotective is me trying to usurp the power that isn’t mine anyway.

 

I thought about all this as I read nearly every label in our pantry on Monday morning. I panicked at breakfast because I couldn’t find anything “safe” to feed Mia. Just about everything that was the easy road to take for breakfast – the loaf of bread, the box of cereal, the breakfast bars – bore warning labels that they could contain trace amounts of peanuts or tree nuts, or that they were made on shared equipment as peanuts, or made in a facility that processes peanuts. I couldn’t decide where to draw the line between being overly cautious and prudent, so I did the only thing I really know how to do: I reheated leftover broccoli cheese egg cups, sliced some strawberries, and gave Mia a breakfast she favored over boring old toast anyway.

 

And as she ate, I stirred together a fresh batch of those little egg cups, and as they were baking, I realized that the only thing I really can do at this very moment is to say no to the fear, and stop giving it a chance to say anything to me. Change my thinking. Renew my mind. Sort out the things I can control (like reading labels more carefully, stocking up on EpiPens-just in case, and amp up my efforts on the homemade food front) from what I cannot control (like whether she’ll ever be exposed to peanuts someday at school or camp or a friend’s house or college – you know, someday in the hazy future). And anyway, my worry won’t add a single day to Mia’s life, so no matter how prudent or proactive we may be as her parents, ultimately we are not the ones in control – God is.

 

Even though it doesn’t always feel like the truth, I know that it is.

And really, that’s what matters most, right?

Love,
Scratch

Broccoli Cheese Egg Cups

Finally Feeling Like a Parent, and Broccoli Cheese Egg Cups
These are mini quiches, really, made without a crust and baked in smaller, kid-sized portions.  Both of my girls devour them, fully aware that they are chock full of broccoli (a miracle, in my opinion). It’s the mustard that makes this recipe extra savory, I think. My favorite is Thomy Delikatess-Senf, a German mustard with far more flavor than American yellow mustard, but I’ve had wonderful results with Dijon mustard as well.


Ingredients:

7 large eggs
3/4 cup milk (I used 2%)
2 T good quality mustard (like Dijon)
1/2 tsp. sea salt
1 1/2 T dry minced onion
1 1/2 cups shredded mild white cheese, such as monterrey jack
2 cups steamed, chopped broccoli

Method:

Preheat the oven to 375 degrees.

Start by preparing the broccoli. Peel the stalks of two small stems; steam as desired. After they cool a bit, chop into bite sized pieces.

While the broccoli is cooling, prepare a 12-cup (or two 6-cup) muffin tins. Grease each cup liberally (or line with greased baking cups). These things stick!

Then, beat together the eggs, milk, mustard, salt and minced onion. Stir in the cheese and broccoli. Pour  the mixture evenly into the muffin tin(s).

Bake for 25-30 minutes, or until the eggs are set and golden brown.