Turns Out, We Have NOT Outgrown FPIES

November 3, 2014 - 10:34 am | November 3, 2014 Flight Attendant Mama, Food Trials, FPIES Reactions, Living With FPIES, Our Lives, Parenting

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Sigh. Last week was a challenging one for us. We had LOTS of food reactions.

LOTS OF THEM.

I was starting to suspect crazy things, like full moons, or I was on a hidden TV show being “Punked”, or that mercury was in retrograde (isn’t that supposed to mess things up? I don’t really get astrology…)

In the end, though, the truth is far simpler: we had a run of bad luck, inattention, and risked some foods that we weren’t sure about that did cause reactions.

One thing became perfectly clear by the end of the week: Zac still has FPIES. No doubt.

Tomorrow I’ll share about Jed’s wonky week, but for today, I’ll stick with Zac’s story.

Remember the delicious treats I made for Jed for Halloween: raspberry fruit jellies, chocolate covered pecans, and allergy-friendly cupcakes? He loved them! (He reacted like crazy to them, but that’s for tomorrow.)

There’s only one problem with that. Jed is the Big Brother. If HE does it, ZAC wants to do it.

So when Jed went ga-ga crazy over those delicious cupcakes, well, Zac decided HE wanted to eat them, too.

I was at work when all these reactions started, which sucks on so many levels. For starters, I hate being away from my kids when they’re reacting. Secondly, I dislike knowing my parents are having to cope with reactions on their own.

Mom reported that on Sunday, Zac ate a hefty bite of one of Jed’s cupcakes.

Those cupcakes are completely safe for Jed (they didn’t even have cocoa in them this time!), but they’re straight up awful for Zac.

The dextrose is corn-derived. The food coloring I used is made of vegetables we haven’t trialed on him yet. The flours in the cupcake (other than quinoa flour) are not trialed yet. There’s white vinegar in them, which is corn-derived.

And sure enough, Sunday night Zac woke up crying, not wanting anything but Grandma to hold him. His poops weren’t that bad the next day, but they weren’t perfectly normal, either.

Monday he seemed okay to my parents, and they didn’t see him snatch any food, but he had a weird appetite. Tuesday I got home from work, and Mom suspects he snatched one of Jed’s blue corn chips…but she isn’t positive.

All she knows is that on Tuesday, Zac hovered over Jed’s food constantly. Based on what Jed ate that day, he could have snatched a piece of an orange, some chocolate covered pecans, corn chips, or sausages. (Yes, Jed’s appetite gets wonky, too, when he’s reacting. Which he was.)

First thing the next morning I changed a poopy diaper on Zac. That was concerning in and of itself; at baseline, he only poops once a day, usually in afternoon or evening.

Lo and behold, that diaper had bright red visible blood all through it.

Bad words bad words very very bad words.

It was soft, mushy, mucousy, and had that horrible “buttery popcorn” smell FPIES reaction diapers always have.

Talk about a blast from the past – I haven’t smelled that particular odor in a while!

That was a sad moment for me.

My “still hanging on my a thread” hope that Zac had outgrown FPIES was completely dashed.

What caused the reaction? Well, as I said, we don’t really know.

My suspicion is that the cupcake caused a very mild reaction; a VERY mild reaction. Then the snuck corn chip on Tuesday took the mild inflammation he had and sent it into overdrive.

Oh, and Jed, in all his 4-year-old-ness, left his bag of corn chips IN THE LIVING ROOM on Wednesday and I caught Zac literally hiding in the corner chowing down on those bad boys.

So we had a really not fun week.

I’m grateful that there was no profuse vomiting, as he used to do at the mere hint of corn. I’m grateful it was only one bloody diaper instead of several days worth.

That does indicate at least a growing tolerance of his triggers, if nothing else.

But I’m sad that my little boy had “buttery popcorn” smelling, mushy, mucousy poops all week.

I’m sad that the child who had been refusing naps for months and wouldn’t take one without a fight suddenly ASKED for naps for four days in a row.

I’m sad that my “much more communicative than an infant” son now sadly answers in the affirmative when I ask him if his tummy hurts.

I’m sad that he hasn’t had much of an appetite, instead choosing to comfort nurse up to 6 and 7 hours per day.

Add Zac’s reactions and Jed’s reactions together, and I’m sad that I’m so tired, anxious, and worn out right now, too.

On a positive note, I left for work bright and early yesterday morning. Saturday night, Zac slept for 6 hours straight!

He often does that when I’m not at home, apparently, but when he knows there are boobies in the house he typically sleeps no longer than 4 or 5 hours. That’s a good sign!

And he seemed to have a better appetite on Saturday, so with any luck, he’s slowly bouncing back.

Now I’m praying he manages to NOT eat anything bad for him while I’m away, so he heals and we can finally, FINALLY, start the sweet potato re-trial.

For the record, we were completely taken by surprise by all the food sneaks this week.

Jed has always been very good about not leaving his food out where his brother could get it. (Previous food snatches were due to stray crumbs and such. Not hiding in the corner with a whole bag of chips!)

And Zac has always been very good about not eating food that he knows is not his. Those stray crumbs were expected (which is why I sweep several times a day), but he’s gotten more brazen at snatching others foods lately.

I don’t know how we’re going to handle this new lax behavior on Jed’s part and sneaky behavior on Zac’s part. This is new for us.

And it has to stop immediately.

We need to be able to trial foods and we can’t if he’s off sneaking corn chips every chance he gets.

Unfortunately, we can’t take away all of Zac’s trigger foods from Jed’s diet. That not only wouldn’t be fair, but it would dangerously limit what Jed can eat.

Sigh. We’ll figure it out, somehow.

I’m just glad last week is over, and hopeful that this week is better.

How was your week? Did you have a great Halloween?

Happy Halloween!

October 31, 2014 - 3:06 pm | October 31, 2014 Holidays

HAPPY HALLOWEEN!!

Zac’s Banana Muffins

October 29, 2014 - 8:00 am | October 29, 2014 Banana, Breakfast, Corn Free, Gluten Free, Muffins, Quinoa, Real Food, Recipes

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A couple weeks ago I decided to try and make some sort of muffin for Zac.

He’s got the basic ingredients; surely I could make something that resembled a muffin.

Since we were re-trialing bananas at the time, I wanted to make a banana muffin.

What I created is a moist, dense muffin that is tasty and filling. I’ve made at least 30 batches of these since the first experiment (some even baked on board an airplane!), and they always turn out beautifully and get eaten quickly!

To start, crack an egg into your blender. Add the milk and bananas and process until smooth.

As usual, we only had frozen bananas, but I’m sure this would work great with fresh bananas as well.

Put the quinoa flour into a bowl and dump the wet ingredients on top. Hand mix with a spoon until just combined. Don’t over-mix!

Then spoon the batter into muffin cups. I’ve been using silicone muffin cup liners and they work like a dream for this.

When I make these muffins for Zac, I make smallish mini-muffins using all 12 cups of my muffin tray.

When I make these for me, I make full-size muffins, which usually nets me 7 or 8 muffins, depending on how large I make each one that day.

There is one other modification I make to these when I make them for me: stevia! I add 6 small scoops of stevia powder to the batter when I intend to eat them.

Zac can’t have stevia yet, but though his muffins are more bland than mine, they’re still quite good. Especially for a child who has never experienced “sweetened” foods before!

Once the muffin cups are filled, throw the pan in the oven and bake. When they’re done, take them out and let them cool on the counter as much as you can before digging in.

It’s really tempting to try and snatch one out while still hot from the oven, because I’ve discovered that they taste heavenly that way! Unfortunately, I’ve noticed that they tend to stick to the cups more when warm.

Once cooled, though, they plop right out.

Yum!

Zac’s Mini-Muffins

So here is a simple, healthy, gluten-free banana muffin recipe that tastes really great. This one is so good, it will remain in my recipe books long after we outgrow FPIES and our other assorted food issues.

Of course, once we outgrow our food issues, I’ll experiment with adding a rising agent like baking soda or powder to the recipe. They’re wonderful as dense as they are, but sometimes a fluffy muffin just hits the spot, you know?

Enjoy!

Zac's Banana Muffins

Prep time

5 mins

Cook time

20 mins

Total time

25 mins

Moist, cake-like, tasty muffins with minimal ingredients!

Author: Cradle Rocking Mama (Carrie Summers)

Recipe type: bread, breakfast, dessert

Serves: 8 muffins

Ingredients

1 banana
⅓ c. milk
1 egg
1 c. quinoa flour
stevia (to taste; I use 6 scoops)

Instructions

Pre-heat oven to 375 degrees Fahrenheit.
Put the banana, egg, and milk in a blender and process until smooth.
Pour the liquid into a bowl and add the quinoa flour and stevia (if using).
Mix just until combined.
Spoon into muffin pan.
Bake for 18-20 minutes.
Remove from oven; let cool.
Enjoy your healthy, tasty treat!

What’s your favorite gluten-free muffin recipe? Doesn’t have to be banana!

Halloween with Food Allergies

October 28, 2014 - 8:00 am | October 28, 2014 Holidays, Living With Food Allergies, Living With FPIES, Living with Fructose Malabsorption, Our Lives, Parenting, Real Food

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The “trick” in “trick-or-treat” can mean an entirely different thing for families with food allergies.

It’s a real challenge to navigate holidays when your kiddos can’t eat traditional treats. It’s worse on Halloween, where one of the biggest parts of the holiday is for kids to run around mooching goodies from other people!

It is possible, however, for food allergic children to celebrate Halloween safely and with a ton of fun!

For starters, this year a new initiative has begun for food allergy kiddos. The Teal Pumpkin Project is all about offering alternatives. Read more about it at FARE.

Basically, anyone who wants to participate needs only to grab a pumpkin, paint it teal, and leave it out where the traditional Jack-o-lantern usually resides. This will send a message: non-food treats are available here!

Then make sure you have some non-food treats handy to distribute. Small glow-sticks, whistles, stickers, and cheap plastic toys are just a few suggestions.

It’s a wonderful initiative that is appreciated and welcome, but it doesn’t solve the problem of how to keep YOUR kiddo from receiving unwanted trigger foods (unless you only go to houses with a teal pumpkin on the porch!) For that, you have to get a little creative.

One idea is to go around your neighborhood just before Halloween night and hand out letters and a special treat bag explaining your child’s food allergy, describing the costume they will wear, and asking if the residents would please give the special treat bag instead of their planned goodies when your food allergy kiddo stops by.

Another option is to instead drive your kids around to family and friends houses, where safe treats are available and there’s no risk that a neighbor might forget the special treat request.

And there’s always the option to give your children a “candy buy-back” plan. The kids go trick-or-treating, come home with their goodies and turn the whole kit and kaboodle over to Mom and Dad. In exchange, they get a cool toy, some money, or some safe treats.

For us, we don’t really go trick-or-treating. We live rather far out in the country, so going door to door would either require driving long distances between houses, or driving in to town and mooching in a strange suburb. Not pleasant options for us.

Instead, we go to Halloween parties.

The trick there (pun intended), is that all the candy available for the kids is entirely unsafe for my kids. Traditional store-bought candy is chock full of egg, cow milk, sugar, corn syrup, and food dyes…which means neither of my kids could safely eat any of it.

So I bring homemade treats for my kids.

If you also need to bring safe treats for your kids to a party, or want safe treats to exchange for unsafe candies after Halloween night, get creative and plan ahead. You CAN provide delicious goodies for your kids!

I’ll share with you what I made this year.

For starters, I’d noticed in the bulk candy section that chocolate covered nuts were proudly positioned right next to the sugary confections. Well, that’s easy enough!

I made a batch of my homemade chocolate…

…dumped in 1 1/4 c. of pecans…

…stirred it around until the pecans were completely covered…

…and laid them out on a parchment lined cookie sheet. I tried to spread them out a bit so they wouldn’t be huge clumps, but I had to be careful not to accidentally wipe all the chocolate off them while I did so. So, there are some clumpy bits.

We were running a little behind on getting to our party, so I stuck the whole sheet in the freezer to set. After about two hours, I simply popped the chocolate covered nuts off the cookie sheet and voila! A yummy, gourmet style treat for my oldest son!

They definitely store better in the fridge; I still haven’t mastered the art of chocolate making, even after a year. My chocolate tends to melt easily at the touch. Keeping them in the fridge gives someone a little longer snack time before their hands are covered in chocolate! (Not that that’s a bad thing, necessarily!)

If nuts are unsafe for your kiddos, you could always make simple homemade chocolates without the pecans.

I also made a tray of homemade fruit snacks for Jed. This time I used raspberries instead of strawberries, and he LOVED them! He kept asking for his “red food”. (No pictures, but they look just like the ones I made last time.)

Both of those treats could easily be placed in a treat bag, tied with a twist tie or bow, and given to your kiddos on Halloween.

For a party, though, you can’t go wrong with cupcakes!

I made a batch of cupcakes using my dairy/soy/egg-free cake recipe, and iced them with my fructose-free, dairy-free icing recipe.

In case you are new here, I shared a frosting recipe using chicken fat in the cake recipe. Despite how that sounds, it is really quite good! However, my second recipe is a MUCH better icing, and it uses tallow instead of butter or chicken fat. It’s absolutely delicious, and no one who has tried it can tell the difference between it and a traditional buttercream!

This time, I was lucky enough to find India Tree food coloring! I was aiming for orange icing, but I got a rather pale, peach-ish colored icing.

Natural food coloring isn’t as vibrant as synthetic dyes, apparently.

It’s very pretty, though. Well worth the money to buy these, if you avoid food dyes!

For just a dollar I bought these little Halloween cupcake decorations, and they really made them festive. My son loved eating his “pumpkin cupcakes”! (Now, that’s a good idea – pumpkin flavored cupcakes! I’ll try that next year.)

The real trick to celebrating holidays safely with your food allergic kids is to focus on the simple things. For example, Jed loves licking the beaters (which is food related, but still a simple joy that can easily be allergy free).

And carving the pumpkin is great fun for everyone!

And dressing up in a costume is always a recipe for a good time. Especially if the costume means you get to roar or bark at will!

The kids had a blast at the party, too. There were lots of kids to play with, lots of games to play, and plenty of room to run around.

After the first fifteen minutes had passed, neither kiddo even NOTICED food or candy any more! They were more interested in playing and acquiring “loot” – all of which was not food.

So there are a few ideas you can perhaps utilize to make this Halloween safe and lots of fun for your food allergic kiddo.

What are your new favorite Halloween traditions with your kids?

Bananas Are Back! (And So Am I)

October 27, 2014 - 8:00 am | October 27, 2014 Flight Attendant Mama, Food Trials, FPIES Reactions, Living With Food Allergies, Living With FPIES, Our Lives, Parenting

BANANAS ARE STILL SAFE FOR ZAC!

Thank you, God!

They definitely aren’t an “unlimited” food, as the fructose does affect him. But they don’t cause FPIES reactions, and for that, I’m happy dancing.

Beyond that, we haven’t really progressed much.

I worked 6 days during the time between the last post and this one, and we don’t typically trial foods when I’m going to be gone.

While I was gone, though, Zac snuck two of Jed’s rice crackers and had no reaction.

When I was home, he took a couple bites of Jed’s unknown-to-us-unattended hamburgers and had no reaction.

Unfortunately, he did have a reaction to the sunbutter and blueberry jelly on sunflower-rye bread sandwich he sneaked a bite of last week. That isn’t too surprising; we already know sunflower isn’t safe for him.

The good news is that the reaction was very mild! No vomiting, no acidic diaper rashes, and no severe pain. Just some sleep disturbances for one night and some mushy, mucousy diarrhea for most of a day. That’s a nice improvement!

Next up for food trials is to continue re-trialing his suspect-safe foods that he reacted strangely to after the stomach bug. Sweet potato is next on the list.

Once we’ve worked our way through his previous safe foods, we’ll either resume the oats trial or begin a salmon trial.

Since he didn’t immediately react to the beef he snuck, a beef trial is definitely in our future. If salmon is safe, we can risk the beef trial. With salmon, there would be three sources of protein I could eat in case the beef proves unsafe and I have to cut it from my diet (pork, chicken, and salmon).

But a beef pass would be MARVELOUS. It’s the cheapest, most accessible, easiest meat we can get…and finally the whole family could eat a main course that was identical!

The boys went to the allergist last week for IgE re-testing. I was very worried after the night when Zac’s eyes swelled shut, but he showed negative for everything they tested him for.

Jed, sadly, still showed IgE for eggs, darnit all. I was really hoping he’d outgrown the egg allergy so I could whip up scrambled eggs for everyone in the mornings.

Oh, well. Another year with an Epi-pen for us.

Otherwise, things are pretty normal. There are some fun parenting stories I’d love to share, like how Jed opened a toy train at the bookstore to play with and they made me buy it ($35!!) so I confiscated his trains for a day as punishment and made him pay me back out of his piggy bank and then had to keep his trains for an extra day as the consequence of nagging me so much for his trains (yes, that was fun), or how Zac did a somersault into a mud puddle on the way back from Tulsa and had mud IN HIS DIAPER on the side of the road and we had to do a spit bath with water bottles (yes, that was fun, too – here’s a visual):

…but mostly I want to share this little conversation the boys had the day Zac ate Jed’s hamburgers.

After he snuck the hamburgers, I obviously removed them. Zac didn’t like that. He wanted to eat those hamburgers!

So he pitched a fit.

A MAJOR screaming fit.

Jed came up and knelt down next to Zac, and started the questions.

“Zac? Do you want eggs?”
“Uhn-uhn.”
“Do you want cookies?”
“Uhn-uhn.”
“Do you want muffins?”
“Uhn-uhn.”
“Do you want chicken?”
“Uhn-uhn.”

Jed looked up at me, then, and reported that Zac didn’t want anything. Then he looked back at Zac.

“Zac, do you want hamboogers?”
“Uh-huh!” Zac responded with a hopeful look on his face and sudden decrease in crying.

Jed responded with a sad smile on his face, “But Zac, you can’t have hamboogers. You’re allergic. Like I’m allergic to your food. I’m sorry, Zachy. (patting Zac’s arm) I’m very sorry you can’t have hamboogers, baby Zachy. But Mommy will make you other food!”

Can a heart melt and break at the same time? That’s sure what it felt like in my chest at that moment.

I had to hug Jed and tell him what a good big brother he is, and how proud I am of him for that.

I hate food allergies and intolerances so much. But they are doing one thing I’d hoped they would do: breed compassion and empathy in my boys.

What’s your best allergy-compassion story?

Global FPIES Day!

October 14, 2014 - 2:07 pm | October 14, 2014 The FPIES World

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Today is an important day!

October 14, 2014 has been declared “Global FPIES Day”!

On this day, the FPIES community is rallying to spread awareness of FPIES to as many people as possible.

Because FPIES is so poorly understood, children often suffer – sometimes for years – before getting the proper diagnosis and treatment.

That has to stop.

The more people who know what FPIES is, the more likely parents of undiagnosed children will hear of it and find a light in the dark.

The more medical professionals who know what FPIES is, the more likely children will receive a timely diagnosis and avoid suffering for months and years.

My family has been living with FPIES for over two years now, and while living with this gets easier, I can promise you it never gets easy.

Many of those who read my blog are part of my little FPIES community. But those beautiful readers who come here for the recipes or just because you’re inspired by our journey, know that you are beloved.

And today I’m asking for your help.

Global FPIES Day is on the 14th. To help keep the date fresh in peoples minds, the initiative has focused on that “14” with lists of 14 ways kids can raise awareness, 14 ways families can raise awareness, etc.

The rest of this post has 14 links to things related to FPIES that will help raise awareness when shared.

Would you pretty please, with stevia on top, share these links on your Facebook, twitter, and other social media pages today?

If it isn’t asking too much, would you also consider saving the photo at the top of this post (of my cute little Zac in the Global FPIES Day frame) and using it as your profile pic on social media for a day?

Please share as much as possible today to make FPIES more visible in the world at large!

Be the voice of these precious little children!

LINKS TO SHARE:

Global FPIES Day

I Still Have FPIES Eyes

Blog: Bullfrogs and Butterflies

The FPIES Foundation: Inspiring Family Stories

Blog: F U FPIES

Blog: FPIES & MudPies

Blog: Our Mack Attack

Blog: Our Lives and FPIES

Blog: Trials and Triumphs of Nicole

Blog: My Little Pie with FPIES

VIDEOS TO SHARE:

Our Superhero: Cohen’s Story (Super Cohen’s Crusade for FPIES)

Zac Walking in a Play Area

Jack’s Soy Reaction

Zac Having an FPIES Reaction

FPIES: Now I Know

Okay, I got a little carried away. There are actually 15 links there. Actually, there were even more out there I could have added! Compared to when my family started this journey a little over two years ago, there is an absolute wealth of information available online!

Please share what you can.

Share as much as you can.

Be downright ANNOYING to your Facebook and Twitter friends.

Let’s saturate Facebook today until every man, woman and child in the world has at least heard the term “FPIES” at least once in their lives.

Let’s shine a light in the darkness!

__________

What are you doing to celebrate Global FPIES Day?

Bananas: Take 2

October 13, 2014 - 8:00 am | October 13, 2014 Food Trials, FPIES Reactions, Fructose Malabsorption, Living With FPIES, Living with Fructose Malabsorption, Our Lives, Parenting

5 Comments

Even though Zac hadn’t returned to 100% baseline, on Saturday, we started re-trialing bananas.

He’d gotten increasingly picky, and I was worried about his weight. Hey, it worked for quinoa, right?

So far, okay.

Saturday he had a good diaper, and no acute FPIES signs.

Sunday he was a tad cranky during the day, and about an hour or so after eating some banana ice cream he had a strong case of hiccups, but that was it.

Since he hasn’t had bananas in a while, this could just be the effects of fructose on his little body. It’s happened before, after all. That’s why we started limiting him to ten bananas a day.

But yesterday he only ate 6 bananas. So, I don’t know.

It’s early, still. We’re going to give it at least 4 days before deciding if we lost bananas in the Great Stomach Bug Debacle or whether they were just a little rough on his tummy immediately after.

By Wednesday, we’ll know.

Some fingers crossed and praying would be very appreciated right now! I really don’t want to lose bananas, even if they are a little fructose-y.

__________

In the meantime, life goes on.

My parents brought the boys home last week with a gift: a nice, big pumpkin to carve for Halloween.

I thought Jed was going to explode from excitement!

This weekend, we carved a pumpkin.

More specifically, Darrel carved a pumpkin while letting Jed think he was helping as I took pictures and video and Zac tried to stick his head inside the pumpkin to see what was going on.

Never a dull moment with small children around!

It turned out great!

Jed actually did help draw the face of the pumpkin, and while Darrel did the cutting, Jed and Zac helped pull the cut pieces out.

The family effort gave me this:

And it only took about 60 photos to get THAT shot!

Trying to get two small kids to sit still and look at the camera while smiling simultaneously is like herding cats on meth.

(If you have small kids and want professional photographs? You are NOT paying the photographer enough. Just sayin’.)

Zac’s hands are a little blurry because he decided to wave at me, but it’s the ONLY picture I got with both of them looking at the camera and not blinking or making funny faces.

Good. Enough.

__________

I experimented in the kitchen a bit this weekend. Zac has been, as I said, increasingly picky, and I was desperate to find something he would eat with gusto.

It occurred to me that I had never made him quinoa noodles yet!

Since he can have eggs, I adjusted my egg-free quinoa noodle recipe to use eggs, omitting the starch, and made him some noodles.

He liked them.

Eventually.

It took about three attempts to even get one past his lips. But he did finally try one. Then he ate the whole bowl.

__________

Last week, when going through the office, I found some colored pencils we’d used for a short time with Jed.

Since their return, both boys have eagerly drawn on every piece of paper they could find.

This might only be the third time I’ve sat with Jed and REALLY worked on his letters, but he managed to accomplish this:

I’m so proud.

My boy is finally starting to write!

It’s fun teaching him things. I think I’m more excited when he finally “gets” something than he is.

I’m a little sad that his signature on birthday and Christmas cards won’t be an enthusiastic scribble anymore, but excited that my sweet boy is growing and learning.

__________

On the subject of paper, Sunday afternoon I looked up and shook my head. THIS was what my living room looked like:

(No, it doesn’t look like this all the time!)

What amazed me was the thought that a year ago, this sight would have had me in hysterical fits.

A year ago, I could never have allowed that much paper in my house.

We could never have left books unattended in Zac’s presence.

The typical kid past-time of playing with empty cardboard boxes? Verboten in our house.

A year ago, Zac was still eating paper every chance he got, and having FPIES reactions to every bite of it.

Today, though, I can go ahead and let Jed play with that crushed roll of unusable wrapping paper I found going through the office and laugh about it, instead of locking Zac in his high chair while desperately searching for every stray bit of ripped paper Jed scattered and earnestly impressing on Jed the importance of NEVER EVER leaving paper in the living room.

FPIES is still a part of our lives.

But at least my children don’t have to live behind a gate in their own home any more.

I’ll take that as a victory.

__________

What victories have you had over FPIES or food allergies?

God’s Providence

October 10, 2014 - 8:00 am | October 11, 2014 Flight Attendant Mama, Living with Histamine Intolerance, Our Lives, Parenting

1 Comment

Yesterday’s recipe was a surprise to me. I wrote it and scheduled to post it last week – and forgot all about it!

Just to give a little update, things are better.

First, I want to thank you all for your concern, prayers, and insight.

After the last post, I was all set to go to work. Bags were packed and food was prepped; we even took the kids to my parents on Tuesday night so I’d be free to leave first thing in the morning on Wednesday.

Then I woke up. And I was sick. Really sick.

Low-grade fever, body aches, head pounding, throat on fire.

Blast it!

I hated doing it. REALLY hated doing it. But I had to call out sick.

For the third week in a row.

For two different sicknesses.

This is ridiculous!

I went to the doctor and she tested me for strep. Negative. In the end, I was diagnosed with viral pharyngitis, complicated by seasonal allergies.

Yay.

But remember when I mentioned God’s providence?

It showed up.

To understand how, I have to tell a little back-story that is also a bit of a confession.

I’ve lost count of the number of times someone has commented on how “organized” and “on the ball” I am.

Generally speaking, that’s pretty true.

Except in one tiny, little, GIGANTIC thing.

Paperwork.

Once Jed was born and we began dealing with his food issues, my “important paperwork” organization sort of…got completely forgotten.

Seriously. I sometimes don’t even open my mail for months. I can glance at an envelope and guess what is in it, and if it doesn’t strike me as of particular import, it gets tossed in a box to deal with “later”.

Ahem. I had boxes of “later” paperwork dating back to 2011 stacked waist high in my office. Other than a path to Darrels computer, there was no way to walk in that room.

It was an embarrassment.

Not only that, but it made doing things – like filing our taxes – nearly impossible.

For the last 3 years, I’ve filed for an extension on our taxes every single year.

As a single lady, my taxes were filed and the refund spent by mid-February without fail. I was on it like white on rice.

The last 3 years? I’ve barely gotten them in by the October 15th extension deadline.

Yes, folks, I’m talking about doing 2013 taxes NOW.

Seriously embarrassing.

So how does God’s providence come into this?

Well. I was sick. Couldn’t really move too much because I got dizzy every time I did.

We needed to get the taxes done.

And my own personal Tasmanian Devils were happily playing at Grandma and PopPop’s house. Thanks to my parents kindness, they were even going to stay an additional night to give me some time to rest and get better.

It seemed a wise use of my “need to sit very still and not do much” sick time to simply sit quietly and sort through those boxes to find all the documentation we needed to do our taxes.

Not as relaxing as watching TV, my own personal preference for sick time, but certainly not stimulating or physically taxing in any way.

Not only did I find almost everything we needed to get our taxes done (a few receipts are missing), but I found – are you sitting down? – over $1,000 in our piles of paper!

$1,229.45 to be exact.

A check we hadn’t cashed from a few months ago. Spare change. Odd cash accidentally caught up in the mail and tossed in the box. The kids swingset fund where we’d stashed the Birthday and Christmas cash contributions given to help us buy them a swingset (which we did earlier this year, but hadn’t deposited the accumulated fund yet).

All odds and ends, but it added up – fast.

Now, thanks to Darrel still leaving the house daily, that money is already deposited (and spent, for that matter). Bills don’t wait. And it isn’t quite enough to salvage this month.

But I was also able to get our taxes finished, and as soon as Uncle Sam gets them, we will get a hefty tax refund.

That WILL be enough to salvage the month.

See? God’s providence.

It never fails.

Even better? I’m hoping to pick up some extra work assignments that will make up the hours I’ve lost in pay from all these sick calls once I’m better.

So we may not even actually lose any income for the month.

Thank you, God, for everything.

As for health, well…

At this point I’m willing to move forward with the assumption that Zac is dealing with unusual seasonal allergies.

Mom and Dad reported that he complained of his head hurting, and that Mom would massage his scalp for a few minutes and he’d feel better and run off to play.

He had a good appetite. His poops were normal. He slept well.

So it appears as if he was just hit with extraordinarily strong histamine reactions to…something.

I’m hypothesizing weeds. Those were the only thing listed for our area as “high” on the allergy pollen count websites.

In any case, things are looking better for Zac.

Just in case, we picked up a refill of the boys diphenhydramine.

I even got a compounded bottle of some for me, too.

Since the pharmacist can use quinoa flour as a filler, he was able to make the pills with the machine instead of by hand. And that cut the cost from $1.66 to $.50 per pill.

Still expensive, but much more reasonable!!

My Mom temporarily forgot that we had reduced Zac’s foods down since the stomach bug, and fed him some banana/goat milk/sweet potato popsicles.

He had no reaction whatsoever!

So now Darrel and I feel okay about re-trialing bananas. We’ll probably start that today. Maybe not, though. He does still have some congestion.

My left shoulder pulled muscle stopped hurting. One morning I woke up and it was just fine. Whew!

Darrels knee still hurts, and my right elbow still hurts.

But we can live with that.

Thank you again to everyone who prayed for us this week.

I truly believe God answered!

__________

What’s your best story of God’s providence?

Popped Quinoa

October 9, 2014 - 8:00 am | October 11, 2014 Corn Free, Egg Free, Fructose Free, Gluten Free, Quinoa, Quinoa, Real Food, Recipes, Snacks, Soy Free, Top 8 Allergy Free

9 Comments

So here’s a fun little recipe: Popped Quinoa.

Back when I first made the Crispy Butter Candy Bars for Jed, I had the idea that puffed quinoa would be a great substitution for the puffed rice or puffed millet.

If I could use puffed quinoa, then one day, those bars could be safe for Zac (providing he passed enough foods, of course).

The search began…and ended pretty quickly.

I’m not sure that any of the brands of puffed quinoa out there are unsafe. I just couldn’t find enough proof that any of them ARE safe, either.

As sensitive to trace contaminants as Zac is, I needed 100% guarantee that there is no potential for cross-contamination.

Without that, my wallet stays closed.

Somewhere along the way, I discovered the idea for popping quinoa at home. I looked into it, and it seemed easy enough. Unfortunately, I read early on that it would not be an exact replacement of puffed quinoa, as you need specialized equipment to make that and the average home chef just won’t have those expensive machines.

No matter; I thought I’d try it out anyway. Anything that offers a little variety in our limited diets is worth a shot, right?

Turns out, it’s easy. It’s healthy. It’s a nifty snack (the easiest way to eat it plain is to lick your finger and stick it in the bowl, then lick the stuck quinoa off – fun!). And it works pretty good as a cereal with milk.

Over my long year of experimenting with quinoa, I’ve discovered that the pre-rinsed stuff still has some bitterness to it. Some people don’t notice it, or aren’t bothered by it, but my family does and is.

(In case you aren’t aware, quinoa has a natural pest deterrent built in: saponins. They’re bitter and keep pests away. The pre-rinsed quinoa seeds get most of it off, but some people still detect it. My family all can detect it.)

Because of that, I rinse my quinoa before using it.

The only downside to that is that when using quinoa in something that requires it be dry to start with, you have to dry the rinsed seeds before using. Things like grinding your own quinoa flour (totally worth it, in my opinion) or making popped quinoa are two things that require that extra step.

So if you don’t mind the slight bitterness, or don’t even notice it, then skip the next part of the tutorial.

Otherwise, rinse your quinoa well. I’ve put it in a bowl, covered it and drained it off, and I’ve also put the quinoa in a strainer and poured water over it. Either way works.

Then dump your rinsed quinoa out on a cookie sheet. Make life a LOT easier and line it with parchment paper first!

Then set the sheet in the oven. The lowest temperature my oven will go is 170 degrees, and I set it on that and close the door.

About every hour or so, I stick my head in and stir the seeds around to make sure they’re drying evenly.

It only takes a few hours at most to dry the quinoa completely, and then you’ve got this:

To turn those lovely rinsed seeds into popped quinoa, I use a 1/4 c. scoop and a large soup pot. The higher the sides the better.

I tried it in a skillet with a lid once. What a mess! I burnt most of the quinoa seeds, and the ones I didn’t burn popped all over my stove (and the floor in front of it).

Once I tried the soup pot I never went back. I don’t even use a lid!

Put the soup pot on the stove and heat it up on medium heat.

After a minute or so, when the pan is nice and hot, dump 1/4 c. of quinoa seeds in the pot.

Give it a second or so to start popping, then start shaking the pot back and forth to keep the seeds moving. This keeps them from scorching in place.

Here’s a short video of popping a batch of quinoa:

It really doesn’t take long. Maybe a minute or so in the pot and then they’re popped.

Some people like to add some oil or butter to the pan first. I tried it that way and didn’t particularly care for the extra nutty flavor it gave the seeds. You may like that, though, so feel free to try it that way, too!

Then dump the popped quinoa in a container and enjoy a healthy snack.

Some people like to season their popped quinoa at this point. You can toss some nutritional yeast, or some herbs on it for a nice flavor boost.

Since none of those are safe for Zac yet, I haven’t experimented with any of them. So have fun and let me know if you try any!

The easiest way to eat it plain is truly to lick your finger, stick it in a bowl of popped quinoa, and lick the stuck seeds off. Very fun for toddlers and small children!

I kind of prefer it with some ice cold milk and a sprinkle of stevia. It’s a nice little breakfast cereal for me.

So pop some quinoa at home and have fun with a nifty snack/cereal.

Popped Quinoa

Prep time

3 hours

Cook time

8 mins

Total time

3 hours 8 mins

Popped quinoa makes a nice snack, or a healthy cereal with some nice, cold milk!

Author: Cradle Rocking Mama (Carrie Summers)

Recipe type: snack, cereal

Serves: 2 cups

Ingredients

2 c. quinoa seeds
sea salt, herbs or spices (optional, to taste)

Instructions

If you don't care to rinse your seeds first, skip to step 5.
To rinse your seeds, pour water over them well or cover with water in a pot and strain.
Dump the seeds on a parchment lined cookie sheet and put in the oven at the lowest temperature. Mine only goes down to 170 degrees Fahrenheit.
Stir every hour or so until dry; about 3 hours.
Put a large soup pot on the stove and heat it over medium heat.
After the pan is nicely heated, dump ¼ c. of quinoa at a time into the pan, shaking the pan constantly as the quinoa seeds pop.
After about 1 minute, dump the popped quinoa seeds into a container.
If you want to season your popped quinoa, do so while still warm.
Enjoy as a snack or as a breakfast cereal!

Have you ever popped quinoa? What do you like to season it with?

__________

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I Don’t Know What To Do

October 7, 2014 - 9:40 am | October 7, 2014 Flight Attendant Mama, Living With Food Allergies, Living With FPIES, Living with Histamine Intolerance, Our Lives, Parenting

21 Comments

It was another long night with Zac.

At the end of yesterdays post I wrote about Zac’s sudden weird eye swelling late Sunday night/early Monday morning.

So yesterday I spent a TON of hours on the phone with pharmacists and doctors.

Both boys are now scheduled to see the allergist in a couple weeks for retesting.

The compounding pharmacist says he can make more dipenhydramine for the boys, since we only had one dose left and it was dosed for lighter weights than the boys are now.

I also learned that the compounding pharmacist can use quinoa flour as a filler in the boys pills, which means they can use the machine to make the pills instead of hand crafting each one, which means the cost per pill will go WAY down!

Zac’s eyes were still a little red and puffy yesterday morning, but he had no eye discharge and was otherwise ABSOLUTELY PERFECT.

No, seriously.

For the first time in over a week, he had NO runny nose. It was as if one dose of benadryl was enough to fix his cold. So weird!

He was full of energy and playful all day long and didn’t rub his nose or eyes once.

But he had two poops that I think were mild reaction diapers. They were mushy and stank of that nasty, sour, “buttery popcorn” smell his early FPIES diapers had.

As soon as we got in to bed last night, he started rubbing his nose vigorously. It looked just like how he’d rubbed his nose and eyes the night before.

He struggled to go to sleep but finally went down.

Twenty minutes later he woke up crying.

I nursed him, and he went to sleep again.

Less than an hour later, he was up again. This time, screaming.

He screamed. For two hours straight.

He didn’t want to be held. He didn’t want to be put down. He didn’t want a bath. He didn’t want to nurse. He didn’t want to eat.

He was rubbing his nose a LOT.

So we gave him another dose of dipenhydramine, hoping it would help him pass out.

It didn’t.

He kept screaming.

No matter what we did, he kept screaming.

If I carried him, he screamed.

If I walked with him, he screamed.

If I stood with him, he screamed.

If I sat with him, he screamed.

You know you’re losing it when you beg your two year old to “Please, baby, please tell me anything to make it better! Just answer yes or no! I’m begging you, baby!”

He also didn’t want to bend at his waist. Whether sitting or standing, he refused to sit or do anything other than plank and kick.

This is where Darrel and I have divergent opinions. Darrel thinks it was a temper tantrum.

I think it was pain.

I’m willing to concede that it turned IN to a temper tantrum after about the first hour, but in the beginning, I believe it was straight up pain.

But from what, I don’t know.

We finally got him to sleep again at nearly 1:00 a.m.

Fifteen minutes later he woke up again.

I passed out while nursing him that time, but based on how I feel this morning, I think it’s safe to assume he woke me frequently throughout the night.

And this morning, my throat feels like it’s on fire. Total strep or tonsillitis feeling in my throat.

Just. Freaking. Great.

Because I’m supposed to leave for work tomorrow and haven’t called out sick ENOUGH from work lately, right?

I don’t know what to do.

I don’t know what’s going on with Zac.

If I can manage to get my throat under control enough to go to work, I have to go. We’re broke. We have to have the money.

And it will be one of the hardest things I ever do. Leaving Zac when he’s obviously not doing well will absolutely kill me.

I’m just at a total loss about what is wrong with him.

Is this a normal kid thing? An FPIES thing? A seasonal allergy thing? A temper tantrum thing? Is he reacting to dipenhydramine? Is he reacting to one of the 5 foods he’s still eating? Is it a histamine thing?

This is the first time in his life where I not only have no idea what is wrong, but I have no idea what to DO to try and figure it out.

When he went into shock at 7 weeks old, I didn’t know what was wrong, but I knew we needed the hospital.

When he’s had FPIES reactions before, I knew what he was reacting to and that avoiding the food and giving him some time would fix it.

This is a total and complete mystery and I hate it.

And 5 days of highly interrupted sleep with a screaming baby giving me terrors of IgE reactions has turned my brain into mush and pushed my body to its limits.

Other than stripping his bed and washing all the linens, I really just don’t know what to do.

Anyone have any brilliant ideas? Please?

Turns Out, We Have NOT Outgrown FPIES

Happy Halloween!

HAPPY HALLOWEEN!!

Zac’s Banana Muffins

Halloween with Food Allergies

Bananas Are Back! (And So Am I)

BANANAS ARE STILL SAFE FOR ZAC!

Global FPIES Day!

October 14, 2014 has been declared “Global FPIES Day”!

Be the voice of these precious little children!

LINKS TO SHARE:

Let’s saturate Facebook today until every man, woman and child in the world has at least heard the term “FPIES” at least once in their lives.

Let’s shine a light in the darkness!

Bananas: Take 2

But at least my children don’t have to live behind a gate in their own home any more.

I’ll take that as a victory.

God’s Providence

It showed up.

See? God’s providence.

It never fails.

Popped Quinoa

I Don’t Know What To Do

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