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Life With Food Allergies: How FPIES Made Me A Better Mom

May 21, 2015 by Carrie 7 Comments

May is Food Allergy and Celiac Disease Awareness month. I’ve been avoiding the topic because it just feels too big and all-consuming. This is something I deal with every single minute of every day as a mom to a toddler with FPIES, which in short, makes my son allergic to food. He’s just a few weeks shy of his second birthday and has exactly 17 foods he can safely consume.

Eating French Fries — Eating potatoes with Dad.

I mention his food allergies often on social media. I’ve written about it here and over on The Leaky Boob. I sometimes get lost in the specific restrictions and frustrations FPIES inflicts on our little family. I start to resent how profoundly our lives are marked by this disease.

But here’s the thing about being a parent to a remarkable kid with special challenges: it has made me a better mom, and on a larger scale, a better human.

I take nothing for granted.

After nearly losing my son to a stroke 36 hours after he was born, I am keenly aware that his presence on this earth is a gift. When his first foods made him vomit to shock, and he was restricted to only breastmilk and a little organic coconut oil for the first 12 months of his life, I wept with relief when he passed spinach at 13 months with flying colors. It never occurred to me to be thankful for every breath, every bite of food that passes my lips, but he reminds me. His breaths, his bites, his life all serve as a reminder to be grateful.

Empathy is a second skin.

I’ve always been fairly compassionate and empathetic, but having a son with chronic allergies has given me a sense of empathy I never knew existed. Any parent who has walked a rocky road with their kids can agree: You never look at a kid or family with special challenges the same way again. It’s no longer a detached empathy. It becomes personal to you, too.

I’ve become the anti-helicopter parent.

It’s counter-intuitive. My son is allergic to food. And guess what? Food is everywhere. Play dates, people’s houses, playgrounds, toddler music class, dog food dishes, restaurant high chairs and booster seats, trash cans, floors, walls, ceilings, shopping carts, faces, hands, mouths, toys…you can’t escape it. I have to be a helicopter parent in social situations, especially when other kids are present. He has so many restrictions, and when I have the opportunity to let my guard down in a food-safe place, I do. I let my son roam within my eyesight, climb and test his limits, and explore to his heart’s desire. I encourage him to play on his own and have age-appropriate adventures and only intervene when absolutely necessary. After seeing him suffer more in two years than many will suffer in a lifetime, the minor bumps, bruises, and messes don’t seem to bother my son, so I don’t let them bother me, either.

Beach Adventure — This kid loves the ocean, even when it’s 57 degrees.

I put up a fight.

Before becoming a parent, I often felt nervous expressing an opposing view point, or challenging authority. I feared losing friends (and even family) by becoming too opinionated or outspoken. Having a child with severe allergies makes it impossible to not offend people. I feel zero hesitation telling strangers not to touch or offer food to my son. I wipe my friends’ kids down with a wet paper towel before they play together. I speak often and loudly about respecting parents and their choices, allergies or not. I openly advocate for causes I believe in without apologizing, even when I know it will turn some people away. Most surprisingly, I don’t really care.

I question everything.

I call food companies and inquire about any hidden, unspecified ingredients. I inspect every space that has been deemed “safe” for my son. I question every test, procedure, medication, and diagnosis my son’s doctors try to administer, and generally annoy the crap out of them. And I have no problem educating doctors about the specifics of FPIES because most don’t know about the syndrome, and if they do, it typically isn’t much. It’s not their fault. FPIES is relatively unknown, and until this month, didn’t even have a medical diagnosis code. Considering I’ve spent the last 18 months immersed in research, and am an expert when it comes to my son, I don’t expect the doctors to have a firm grasp on his condition. I listen, I stay open, and I respect their training. Then I weigh the potential benefit and the potential harm and advocate for what is best for him.

DrAllen — My son with one of his favorite doctors.

I own my strength.

I pumped every single day for 21 months. I fought post partum depression and PTSD while figuring out my baby’s food allergies and dealing with insurance and doctors and mounting medical bills. I went on a Total Elimination Diet and stuck to it for a year in order to keep my milk safe and allow my son’s gut to heal, even though I dreamed about Eggs Benedict and wanted to submerge myself in a vat of guacamole. I had to be disciplined. My son’s life depended on it. I also fought to keep my marriage intact, even when the pressure of that first year nearly shattered us. Owning the hardship and vulnerable places allowed me to own my strength, too.

I crack jokes ALL THE TIME.

I feel my feelings, and I can get stuck in FeelingLand. Humor is one way for me to deal with the overwhelm. I have fully embraced my snark and wit and unladylike bathroom humor. Remember that quote “the only way out is through”? I choose to get through it with laughter and sarcasm. Because it doesn’t matter HOW you get through it, it just matters that you do.

Gratitude.

Empathy.

Trust.

Tenacity.

Curiosity.

Strength.

Humor.

These are the ways FPIES and my son have made me a better mom and human. I’ll take it.

Eff you, Fpies.
Carrie

#TinyTriumphs

May 13, 2015 by Carrie 3 Comments

A couple of weeks ago, I posted this photo and narrative to Our Stable Table’s Facebook and Instagram pages. I was thoroughly surprised at how far the post went, who was touched by it, and the outpouring of joy, celebration, tears, empathy, and love that came our way.

During the first few months of E’s life, he was drugged heavily to keep seizures at bay. Once he weaned from the medicine and the effects wore off, he wanted very little to do with being close to me. He rejected the boob, he rejected mommy’s comfort unless I was the only person available to hold and soothe him. My efforts to console, rock, and hold him close were met with terrified eyes, cries of protest an arching back, or hyperactivity. Yes, it was heartbreaking for me. But I also fully understood the profound trauma he had experienced, and even though I ached to be his safe place, I knew I wasn’t. I accepted it, supported him in his choice, and tried my hardest not to take it personally.

E has always been affectionate and sweet, generous with kisses and cuddles (as long as we are standing or sitting upright), and loves his mama. I see it in his eyes, in his playful actions. We laugh and joke and play with ease. But E has never been able to just let go and relax with me. And he definitely hasn’t been able to sleep next to me.

If I’m completely vulnerable here, I couldn’t relax with him either. E stopped breathing at my breast. I blew air into his lungs to keep him alive. For many days, I didn’t know if he would live or die. For many months after that, E and I did not trust each other. E didn’t trust my milk, my breast, my body. I didn’t trust that E would stay, that he would keep breathing, keep overcoming.

Our trust was broken.

That moment, us cuddling and E sleeping on the couch? That moment was our healing. The PTSD losing it’s iron-like hold on our hearts. Our final defenses crumbling down. Both of us giving up the idea of control or hyper-vigilance and relaxing into what our bond is now. It is unbearably sweet, tenuous, and victorious. It is brand new.

I can trust my son to stay and he can trust me to keep him safe.

I shared our couch cuddle with the Internet because these moments, the small victories that signify huge change and growth, often go unnoticed by us. Unmarked. Undocumented. Unseen by others. In the midst of heartbreak and fear, exhaustion and anxiety, these are the moments that keep me going. It fuels me to keep fighting to restore what we have lost as a family, and advocate for the families out there who experience adversity that comes with life-altering circumstances.

So, I have a request: I want your moments. I want your #tinytriumphs. I want your pictures, the small things that equal big progress and healing in your life and in your family. I want to share these with other families who often feel hopeless and helpless (like my husband and I often do), because we need each other. We need to be reminded of victory, even when it stings our exposed wounds. This is how we move forward, even when the progress is painfully slow.

Here’s how you do it:

Send us your picture with a narrative of what is significant about that moment, around 100-300 words. Fewer words are okay, too.

Ways to submit your #tinytriumphs:

Email me. Carrie at ourstabletable dot com.
Tag OST on FB or IG, and be sure to change the settings to “Public” if you want us to share.
Private message OST, and we will share it publicly.
Include the #tinytriumphs in the post.

I can’t promise we will be able to share all of the submissions, but we will certainly try. Because we need this.

We grow together, we mourn together, we celebrate together. Everyone deserves a seat at the table, and your moments matter here.

Banana Cashew Ice Cream {Vegan and Paleo}

April 9, 2015 by Carrie 1 Comment

Pizzelles are a big thing around our house. My husband has some fairly strong Sicilian roots, and he takes his Italian desserts seriously. One of his favorites? Star Anise Pizzelles. We don’t eat them often because 1) we rarely eat wheat and 2) we eat them ALL in one day because we have no “off” switch with these tasty discs.

I made gluten-free pizelles earlier this week, (my husband and son ate them all in less than an hour), and formed miniature waffle cones. Then I asked you to help me fill them. You came up with some amazing suggestions. Here’s a sample of some of the suggestions:

Sweet Ricotta Cream
Chocolate Chia Seed Pudding
Nutella Mousse/Nutella Marshmallow Creme/Nutella Anything
Tuna Poke with Avocado
Pulled Pork
Marmite
Whipped Cauliflour and “Fried” Chicken
Ben and Jerry’s new Jimmy Fallon Ice Cream (I love Jimmy.)

But the suggestion that hit home for me was Cashew Ice Cream. Here’s why: I wanted to make a homemade version and have been experimenting with fast paleo recipes that don’t require a chemistry lesson from Mr. White or a trillion special ingredients.

BreakingBadCleanMeme — Mr. White tells it like it is.

Because ice cream should be easy and simple and thoroughly satisfying. And if we can make it healthy-ish, even better.

My favorite Sicilian gave me two thumbs up, which is hard to do. He loves ice cream. He loves pizzelles. Healthy ice cream in a quinoa pizzelle? He’s in foodie love.

So, here it is. (Oh, and I named it after the reader who inspired me! Thanks, Terri.)

Stephen’s Cashew Banana Ice Cream – Serves 1

Ingredients:

1 ripe banana, diced and then frozen solid
1 Tbsp (heaping) cashew butter
1/2 tsp grade B maple syrup (optional)
dash of vanilla extract (seriously, a few drops will do)
a pinch of cardamom or 3 drops cardamom bitters

Directions:

This takes some serious power so I suggest using a NutriBullet (what I use) or a BlendTec or Vitamix type of blender. The banana is very solid and it could damage your less-powerful blenders.

Take frozen banana pieces and blend until smooth. You will probably have to pulse it first several times, and then scrape down the sides of the blender before you blend.
Once banana is thoroughly blended, add the rest of the ingredients and blend until incorporated. Be careful not to over blend, or your ice cream will be more like a warm milkshake.
Pop in the freezer for 30 minutes to firm up a bit, or eat right away. Top with chocolate chips, nuts, or blueberries.

If you want to try your hand at making mini-waffle cones, this quinoa flour recipe is perfect if you omit the baking soda.

Really, the possibilities are endless when you are using banana as the base. I’m going to get creative this summer and see how many variations I can make. Because ice cream.

Always Bananapants and Never Banana Hammocks,
Carrie

6 Reasons to Advocate for People with Food Allergies

March 26, 2015 by Carrie Leave a Comment

Have you seen this hilarious video that went viral about crunchy people who say they are gluten-intolerant?

I genuinely like this guy, JP Sears. I’ve spent more time than I’d like to admit watching his videos and giggling when I should be doing other things…like being a responsible adult or going to bed. I think JP’s sense of humor and ability to parody popular Crunchy Culture is on point, and he is never malicious. It’s freeing to be able to laugh at myself and my own borderline ridiculousness. It’s part of how I keep my creativity flowing, sanity intact, and NOT take myself so seriously.

The gluten-free video, however, struck a different chord for me.

This is my son, E.

Freakishly adorable, right?

E was diagnosed at 7.5 months old with FPIES. It’s a long name for a complicated and relatively rare syndrome that makes my son allergic to food. Not some foods, MOST FOODS. He’s almost two years old and has exactly 15 “safe” foods. He has 14 known triggers that cause serious reactions ranging from chronic, explosive poop to vomiting-to-shock. We found this out the hard way when he vomited to shock TWICE after eating egg yolk and avocado.

Although we’ve never directly fed E wheat or gluten, he’s reacted to it severely through my breastmilk. He also vomited from a trace amount he came into contact with from a little friend. ONE CRUMB. And my baby was in pain for five days. I’m actually terrified of what would happen if he ingested a whole bite of something that contained wheat.

JP’s video really hit home how lightly our culture regards food allergies, and while I can see the humor, it also terrifies me as a mom to an FPIES kid. There is very little understanding and distinction between a sensitivity and an allergy. The media often uses the terms interchangeably. Outside of the medical community, ignorance reigns.

I also have a gluten sensitivity, (my stomach revolts and I’m Queen of The Porcelain Throne for hours), and though not nearly as severe as my son’s allergy, I still avoid it because it has a negative consequence on my health. And my parenting. Have you ever tried chasing a toddler when you’re also trying not to poop your pants? It’s like a horror film, but with diarrhea instead of blood.

And you know what else? It IS annoying. It’s annoying to ask (and be asked) if something has gluten at a restaurant, because believe me, I would much rather order straight from the menu. It’s also super annoying to ask my friends if they can disrupt their lives and accommodate my son for playdates and nannyshares. And god forbid we have to actually go visit people in another town or state, because they will suffer the annoyances of making their space safe for my child. It’s a huge damn inconvenience for EVERYONE. But I can’t control that and I’m thankful for friends and who help us expand our bubble. They do it because they love us, they love my son, and advocate in the most important ways: making the world a little safer for my tiny human.

So, what can you do?

Here are six reasons to advocate for people with food allergies:

It doesn’t matter if someone thinks food allergies or sensitivities are pretend bullshit. Nobody knows what it’s like to be inside of your body except you. Don’t assume you know what someone with a reaction to food is experiencing.
It doesn’t matter if gluten-free seems to be a trendy diet fad propelled by mostly hipsters and crunchy moms. For millions of people, it’s real and gross and painful and sometimes life-threatening.
Denying the absolute gravity and seriousness of food allergies and sensitivities puts my child, and every other child who suffers from food allergies, at risk. I know. It’s so easy to mock. People with vulnerabilities are usually easy to mock, though.
Joking about food allergies and sensitivities (because seriously, many folks do not understand the difference) makes some under-educated people feel safe in assuming that we’re a bunch of overreactive, overprotective parents, and that the only thing our children suffer from is helicopter parenting. For the record, I HATE being a helicopter parent. I would love to be able to let my kid eat a month-old chunk of granola bar he picks up off the floor. But the reality is, that granola bar could cause him to go into shock. So, yeah. I’ll freaking helicopter the bejeezus out of my toddler if it means we skip a trip to the ER.
Making fun of allergies and sensitivities invalidates a very vulnerable population who needs you to take food issues seriously and advocate for understanding. It just takes one person who doesn’t take the allergy seriously to land a kid in the hospital. Or worse. Don’t be that person.
Gluten, tree nut, soy, and a multitude of other allergies are not a choice. Make fun of my crunchy lifestyle. Make fun of my hometown, or my love of wine and brussels sprouts or young adult fiction. I’ll laugh right along with you because I CHOOSE THOSE THINGS. But seriously, stop with the food allergies. Food allergies are not a choice. They are something you can’t change, like your DNA or your race or your birth parents. Stop marginalizing an entire population of people who have no control over how their bodies react to food.

Now, go to JP’s video channel and laugh your ass off at his videos. I’m sure JP, like 97% of the rest of the world, means exactly zero harm. But the only way the world becomes safer for our most vulnerable little people is by raising awareness and spreading good information.

Still Loving and Missing My Boyfriend Gluten,
Carrie