Charming Smoothie (and popsicles)

 
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What mother wouldn’t like to get more fruits and vegetables into her kids tummies?  I know I’m always on the lookout for ways to encourage better eating habits in my older son, Mr. Charm.

But he’s not always interested in my attempts.  He’ll pick out ‘the good stuff’ and leave the veggies behind.  (Oh, just wait til he’s grown up and discovers how yummy veggies can be!)

Until he’s a grown up, though, I’ll keep trying to find ways to make him eat nutrient rich food.

To that end, I keep experimenting with smoothies.

He’s not a fan.

I keep hearing about kids who LOVE fruit smoothies, but I just don’t seem to have one of those kids in my house!

On this elimination diet, we’re down to cantaloupe, honeydew melon, pineapple and blueberry for fruits.  I decided to try a smoothie…after all, at least two of those are quite naturally sweet – he’s got to like it, right?

Wrong.

In the end, I tossed the smoothie into some popsicle molds and figured I’d give that a shot.  It WORKED!

HE thinks he’s getting a treat.  I know he’s getting health food!  Score one for Mama!

So here’s what I did:

CHARMING SMOOTHIE POPSICLES

A Healthy, Delicious Treat!

-handful of cantaloupe
-handful of honeydew melon
-handful of pineapple chunks
-coconut milk (the full-fat can kind, not the drink)
-drizzle of honey

Put all the fruit into your blender.  (In my case, I’m using an immersion blender because my blender died.)

Add coconut milk until it just reaches the top of the fruit.  Drizzle a tiny bit of honey into the mix.

Blend!  I have to blend a LOT because Mr. Charm doesn’t like stringy bits in his popsicles.

Pour into popsicle molds and put in the freezer.

Wait a few hours, then watch your kid jump up and down for a ‘treat’ that makes you feel good to give him!

Do you have any yummy popsicle recipes?  How about any sneaky ways to get your kids to eat their fruits and veggies?  Please share in the comments!

Yummiest Stir-Fry EVER!

 
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This is the basic recipe for what my husband calls “AWESOME!”

I’m pretty sure you can tweak this to your own preferences and it will still remain awesome.

Peel a few carrots, then cut them on the bias.  In a frying pan, add whatever oil/fat is acceptable on your diet (I used olive oil).  Toss in some finely diced onion and garlic to soften.  After about two minutes, add the carrots.

Onions, garlic and carrots in a pan…smells good!

While the carrots are cooking, cut some bell peppers into strips, then cut the strips into thirds for bite sized pieces.  Toss those in the pan and let them cook for a couple minutes.

It’s starting to get colorful…

Add in some leftover meat cut or pulled into bite sized pieces.  We had roast beef the night before, so that’s what I used.

Starting to look like dinner!

Cook it long enough to reheat.  At this point, I added some sea salt and pepper.  Stir it around, and then add some baby spinach leaves.

Wait…am I cooking a salad?

Start stirring until the spinach leaves are all wilted.

Delicious!

Immediately plate up, and sit back to enjoy a little bit of heaven in your mouth!

(It really is good – I modified it for my diet by using JUST onion, garlic, oil, carrots and beef, and it was divine!  That’s how I know you can tweak this with just about anything and make it delicious.)

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THE YUMMIEST STIR-FRY EVER

-leftover meat, cut into bite sized pieces (I used leftover roast beef)
-carrots, bias cut
-red bell peppers, cut into thin strips
-onion
-garlic
-baby spinach leaves
-oil/fat

1. Prep your veggies: peel and cut the carrots, onion, garlic, and bell peppers.
2. Heat your oil in a pan, add the onion and garlic.
3. After about 2 minutes, add your carrots.  Let cook til just starting to soften.
4. Add the bell peppers.  Cook for about 3 minutes.
5. Add the meat.  Cook long enough to reheat.  Add sea salt and pepper, too.
6. Add the spinach leaves.  Stir until they’re wilted.
7. Plate up and enjoy!

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Do you have any delicious ways to modify leftovers in your house?  Let us know in the comments!

 

Potato Pancakes

 
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What do you eat for breakfast when you’ve eliminated nearly everything from your diet?

Well, you look at what you can eat and try to figure something out.

We can have white potatos and beef…well, steak and hash browns is a popular breakfast, right?

Except, we don’t have any steaks.  Hmm…

Then I remembered something the Geek said once about a breakfast dish his grandmother used to whip up: Potato Pancakes.

It was basically leftover mashed potatos from dinner thinned out with milk and fried up.  Not too hard, right?

Except – no dairy in our house!  No problem!  So here’s how I do it:

You’ll need a bunch of potatos, about 8 ounces of ground beef (or whatever meat you can use – this is optional, of course!), and you can add onion and garlic to ‘up’ the flavor.

Potatos and Ground Beef, peeled, defrosted, ready to go

Peel and dice the potatos, put into a pot to boil.

Potatos boiling – they’re very starchy!

If you’re using onion and garlic, throw them into a frying pan to soften, then add the ground beef and brown it off.

Ground beef in the pan – I didn’t add onion or garlic this time

Drain the potatos in a strainer into a bowl.  Start mashing, adding BACK the liquid you took out as needed for consistency.  Of course, if dairy isn’t a problem in your household, you could make these creamier by draining the potatos and adding milk.

Once they’re mashed, dump in the ground beef mix and stir until well combined.

(I do everything up to this point ahead of time and store it in the fridge.)

Many breakfasts, sitting in Tupperware waiting for morning!

Take whatever oil/fat is safe for you (olive, coconut, canola, etc.) and heat it in a frying pan.

Using a spoon, scoop out small amounts of the potato mix and flatten into a pancake shape –  approximately 3-5 inches around (it’s not precise!) and place in the frying pan.

Be patient!

Now, be patient!  I always try to flip them too soon, but if they don’t want to slide easily onto the spatula, they aren’t ready.  Wait!

Once they’ll slide onto the spatula in a solid, barely moving piece, flip them over.

Be patient again!  Once they’ll slide onto the spatula, plate them up and eat.

Yummy!

For something so simple, they’re really quite delicious!

NOTES:

I use imprecise amounts because I make up a huge batch of this and leave it in the fridge.  It makes breakfast much easier!  What I usually look for is a ratio that looks about 70% potato, 30% meat.

We’re now experimenting with adding other things into the mix.  Finely grated carrots did pretty well, so feel free to tweak it with whatever veggies are on your safe list.  Bell peppers chopped finely might be delish!

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POTATO PANCAKES

-bunch of potatos
-8 ounces ground beef
-onion (optional)
-garlic (optional)

1. Peel and dice the potatos, put into a pot to boil.
2.  If you’re using onion and garlic, throw them into a frying pan to soften, then add the ground beef (meat) and brown it off.
3.  Drain the potatos in a strainer into a bowl.  Start mashing, adding BACK the liquid you took out as needed for consistency.
4. Mix potatos and meat together.  You can now store this in your fridge to use in the morning.
5. Heat oil in a frying pan; scoop a small amount of mix and flatten into a circle shape.  Place in frying pan.
6. Wait until they’re easy to slide on a spatula, flip them, then cook the second side the same amount of time.
7. Plate up and enjoy!
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What easy breakfast dishes do you make for your allergy/FPIES kids?  Tell us about it in the comments!
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This post has been shared with Allergy-Free Wednesdays, Real Food Wednesdays, Whole Food Wednesday, and Frugal Days, Sustainable Ways.

 

Galley Wench

 
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I got up with the kids this morning to let the Geek sleep in a bit (returning the favor!) and started off with our breakfast potato pancakes.  Mr. Charm was playing in the new addition, when suddenly he ran up to me shouting “Murray!” (our cat) and grabbed my hand to drag me off.  I made him wait to let me finish what I was doing, then let him drag me into what will be his new bedroom.

Halfway across the room, I realized there was NO SCREEN on the OPEN window!!

Oh, noes!!

We didn’t even think about that when we opened up the house last night to let the paint fumes air out.

Sure enough, Mr. Charm dragged me straight to the window and threw almost half his body over the edge, pointing.  I looked where he was pointing and he had taken two of the little rattle toys I had dug out for Mr. Happy and thrown them out the window!  Ugh!

So, I picked him up and told him we’d have to go get the toys now.

We went out the front door, down the steps, and as I turned towards the front of the house, I saw Murray STANDING ON THE LAWN!!!

I ran towards him, Mr. Charm in tow, and he darted away from me towards the window.  Then he looked up at how tall the jump would be and stopped to wait for me to catch him!  Lazy cat!!

Then I stumbled back towards the house, a 25 pound toddler in one arm, and a 12 pound cat in the other.

Way to start the morning off right!

I got everyone inside, ran to close the windows, and did a kitty head count.  All were accounted for.

Unfortunately, with the windows closed, the paint fume smell quickly returned.  I called our contractor at 10:00 a.m. on a Sunday to ask where the screens to our windows were.  Turns out, he had left them in the attic.  WHY they weren’t just put on the windows, I’ll never know.  Still, we got the screens up, opened up the windows, and the house smelled normal again in short order.

We left the house open to let it continue airing out, so we were all slightly sweaty and hot all day long.  Thank God it wasn’t 100 degrees again today!

I stayed hotter than I should have been, though, because today I spent almost ALL of my waking hours in the kitchen.  It reminded me of work: I was the Galley Wench again!

Well, actually, after the window debacle, it’s really kind of a boring day to describe, so I’ll just list off what I made today:

– 16 potato pancakes

– 3 smoothies (the Geek and I drank ours, but Mr. Charm didn’t want to drink his, so…)

– 7 cantaloupe, honeydew, pineapple and coconut milk with honey POPSICLES

– 2 stir fry lunches (one for me, one for the boys – a repeat of last nights terrific dinner)

– 4 coconut milk, cocoa powder and honey FUDGESICLES

– 2 cantaloupes cut up and in the dehydrator

– 1 honeydew melon cut up and in the dehydrator

– 1 pot roast (surprised?)

– 2 batches of oven roasted vegetables (one with peppers for the boys, one without for me)

– 1 batch of Kale Chips (delicious, from what the Geek and Mr. Charm had to say)

– 1 pitcher of orange juice

– 1 pitcher of iced tea

– 2 servings of melon sorbet

– 1 jar of lemon vinegar to steep for our all-purpose cleaning solution, therefore…

– 2 ice cube trays of fresh squeezed lemon juice!

– 4 potatos cut into french fry strips, covered in water in the fridge

– 2 potatos diced, boiled slightly, and waiting in the fridge for breakfast

Hmm…I think that’s all!  Wow, that’s a lot of cooking!  But I think I made some pretty delicious sounding and tasting stuff, considering the limited ingredient list I have to work with.

In good news, while Mr. Charm only ate one potato pancake this morning, and only picked at the beef in his stir-fry, he scarfed down TWO of the melon popsicles, one fudgesicle, 3 full sippy cups of OJ, at least 2 sippy cups of tea, lots of water the rest of the time, lots of meat and potatos from his dinner, and almost 3/4 of the bag of Kale Chips I made him.

It finally occurred to us after lunch, when he was eating so poorly, that duh!  He’s teething THREE teeth right now!  Of course he’s eating badly – it hurts to chew!  Maybe his diet wasn’t completely ‘balanced’ today, but at least I got some good calories in him, and none of it was junk food!

Mr. Happy had a good day, too.  Both boys slept well last night, actually, though neither napped well during the day.  However, other than typical Mr. Charm behavior from being tired and teething, both boys were in fine spirits today…smiling, playing, giggling, being happy.

I love days like that!

Mr. Happy didn’t even vomit once today!  He spit up A LOT, but it was most definitely spit up.  He choked and gagged on his spit up a few times, and coughed a lot today, and yes, he and Mr. Charm both still have diarrhea diapers, but overall, he seems to be feeling better.

All in all, a very good day in our house.

However, the BEST part of my day, my FAVORITE thing I did today was something I hadn’t done in 23 days and 15 hours…I nursed Mr. Happy!! 

Why would I start nursing my son, you may ask, when he seems to be doing well on the formula and my system isn’t completely cleaned out?

Good question, but no great answers.  It came down to this: he was absolutely reacting to the Neocate.  I am concerned that he is in a ‘honeymoon period’ with the Elecare, and will start reacting to it later this week.  The only way to know for sure is to wait and see, BUT…if he DOES react to the Elecare, we will have no choice but to start nursing him again sooner than we planned to.

Not a bad plan, except my milk supply is dropping more quickly now.  Today I pumped only 2.5 ounces TOTAL three times that I pumped.  I previously got twice that off one breast when I started pumping 24 days ago.

So we’re concerned that my supply will diminish so much that I won’t be able to nurse him if the time comes that I must.

A compromise we both found acceptable was to begin nursing him a few times a day, and to continue pumping as often as I currently am while feeding him formula the rest of the time.  Sort of easing in to nursing.

This way he may not have any reactions, and if he does, they will hopefully be very mild.  Over the course of 2-3 weeks, I’ll slowly start nursing him more and feeding him less formula until we’re 100% breastfeeding again.

The goal is to nurse him, for two reasons: one, he is reactive through my milk, so I can ‘trial’ him on foods sooner than typical FPIES kids by eating something and seeing how he responds through the milk.  This way, he can perhaps have a decent sized list of safe foods by the time he starts transitioning to solid foods.

Two, formula is expensive (even though WIC is paying for it – they’ve already told me twice to let them know the minute I start nursing again so they can stop ordering the formula!) and bottles are a pain.  It’s much easier to nurse if you possibly can.

I’m not foolish – I know there is still a possibility that I will not be able to continue nursing him.  He may be so aggravated internally that my milk just won’t work for him.  The allergist may be right, and he IS actually allergic to my milk.  Whichever way it goes, I will do what is best for my baby.

But I won’t lie – I LOVE nursing my babies!  So for tonight, even though the decision was angst-filled and possibly fraught with consequences, I turned off all that anxiety and just reveled in the joy, the closeness, the bonding of nursing my sweet little boy.

Please pray with me that we can easily transition into full-time nursing with no ill-effects on his system.  We will be watching him closely.

Elimination Diet Day 4 – On the Fly

 
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The Geek read my posts from yesterday, and so this morning, he let me sleep in.  Until 1:00 P.M., y’all!

Sometimes that man knows me better than I know myself, because my mood is decidedly more upbeat today than it was yesterday.  Exhaustion can drain you of everything, even good spirits.

Granted, I won’t get as much done today as usual because if I’m smart – which I often aspire to be – I’ll try to get to bed at a reasonable hour.  Nine or ten hours in a day doesn’t give you time to accomplish much.

However, when I woke up, I saw that the Geek had cooked more of our potato pancake breakfast patties and had even made some for me.  So breakfast was still ‘diet worthy’.

When I was up and going, the Geek went to try and take a nap, and I proceeded to try to come up with a lunch for Mr. Charm.

This was tricky business…we only have roast, and I wanted to use the leftover roast for dinner tonight.  We were out of ground beef, and that left not a lot of options for me.

I took the cream off the top of a can of coconut milk and whipped it until it was fluffy.  Then I washed some blueberries and added them to the cream.

He LOVED the cream.

Yummy Coconut Cream!

The blueberries?  Not so much.  He ate one bite, but after that would suck off the cream and spit the blueberries back out.

So I tried to ‘blend’ the cream and berries together in my food processor, but that didn’t work very well.

The Geek woke up because Mr. Charm had opened the bedroom door and the noise was making it hard to sleep, so he came out and held Mr. Happy and offered suggestions.

I added some honey to the blueberry/cream mix.  The Geek liked it better, but Mr. Charm wouldn’t even try it.

I tried cantaloupe with cream on top.  Nope.  No go.

I put the two glasses of fruit with cream together in the blender and tried to mix them up.  Our blender is a poor excuse for a blender, and it really didn’t blend all that well.  Mr. Charm took a few big sucks through a straw, but then a chunk of something got stuck in it and he wouldn’t try it again.

Eventually, we gave up for today when the Geek saw the potatos I had sliced up for fries in the fridge.  French fries again!

We discussed buying a new blender, but the one I want is a Vita-Mix, and those are ex-pen-sive.  Right now, we’d like to hold off on pricey purchases.  Next time we try smoothies, I’ll put everything in a glass pitcher and get out the immersion blender.  It will probably do a better job!

Then I got ready to go, because with the Geek home watching the painters, I needed to head to the grocery store.  I took Mr. Happy with me to avoid the fumes, and Mr. Charm and the Geek  stayed home and, from all reports, had a pleasant afternoon together.

Mr. Happy and I headed off to the health food co-op  with two shopping bags of returns.  I had purchased a ton of gluten-free flours, mixes and snacks after the initial hospital release that were no longer items on our menu.  In all likelihood, they will be back on our diet someday.  But right now, I can get my money back on them, and I’d hate to leave them cluttering up my kitchen for who knows how long, trial them, and find they don’t work, and then have to just throw them away.

It took a while at the counter, and while the employees of the Co-op are usually of the ‘bend-over-backwards’ mentality, today I must have hit at a bad time.  The woman taking the returns made it very clear that this was a huge imposition for her, and after doing the passive-aggressive route for a while, which was making me edgy, she finally looked me in the face and said “For future reference, you need to break up your returns into smaller parcels.  This is taking a lot of time.”

Now, I’d already explained to her that my son has a rare food protein allergy that we only discovered after a week in the hospital, because they want to know why you’re returning things.

So hot on the heels of hearing that I’m dealing with a chronically ill ten week old baby – a baby who was conveniently strapped to my body at the time for full visual cuteness – she gives me grief about ‘inconveniencing’ her with too many returns.

Without warning, and much to my own surprise, I started crying.

She wasn’t terribly rude about it; in fact, she was very professional in her statement (once she got bold enough to make a statement – the passive-aggressive stuff doesn’t count).  The fact remains, though, that I was returning the food to the store because it is poison for my baby AND she knew that and she still chose to put the focus on how time consuming this was for her.  It brought out those feelings from yesterday: I’m isolated, people don’t understand, people don’t care, people think you’re crazy.

Suddenly it was “Ma’am?  Are you okay?”

“I’m fine.  It’s just that I’m dealing with a lot right now and any extra grief just is too much.  Sorry.” I said.

Much more contrite, she now said “I’m sorry if I’m making this harder for you.”  Which would have been lovely – if she’d left it at that.  But, no, she continued on with “I was just telling you, you know, for future reference.”

Ugh!  I blew it off after that, waited quietly, and got my money back.  Then we went shopping to spend it all again.

This is an interesting diet to be on, in terms of shopping.  The bottom of my cart was laid out with eight 5-pound potato bags.  Two bags of onions, five cantaloupes, three honeydew melons, three watermelons (they were little), etc.  I bought large quantities, but little variety.  It was weird.

I decided to swing by their (very small) meat section to pick up just a little bit of beef to give some variety to my meals until our cow comes in.  Boy, am I glad we’re getting a whole cow!  Steaks were $16/pound!  Ground beef was better – $5.35 per pound.  We were paying $4 and up at the regular grocery store for corn and soy-laden, citric-acid sprayed, feed-lot beef, so really, it wasn’t that much higher.  I got 6 pounds of ground beef so I can have hamburgers for lunch this week with Mr. Charm and left the rest alone.  We’ll finish up the roasts.

Then it was off to the checkout lane, and a reminder of what the usual co-op employee mentality is like.  The checker was friendly and nice, the other checker helped sack groceries when she didn’t have customers, and then, when it was clear my food wouldn’t fit back into the cart in shopping bags, she went to get another cart and then helped me out to my car with the baskets.

She even loaded bags with me, and chastised me for trying to load bags myself, as I had Mr. Happy on my chest.  I reminded her that the whole point of wearing your baby is so you can continue to do things with an infant around, but thanked her very much for her time and trouble.

Turns out, she’s a nursing/midwife student, and she started asking me about my two boys and their deliveries, so we talked babies for a bit.  It was nice.  Very effective at getting me out of the funk the other woman put me in.  She’s a sweetie, and I can see being comfortable enough with her to trust her with delivering your children.

When we got home, I barely walked in the door when I said to the Geek “We’ve got a problem.”  The house stunk of paint fumes!  I started getting a headache the minute I smelled it. (I’ve been trying to avoid talking about it, because it’s just more stress and foolishness,  but we started remodeling our house shortly after Mr. Happy was born.  More fun stuff to deal with in an already stressful time!)

So I finished unloading the car while e Geek got Mr. Happy’s bottle ready, and then we made sure all the windows were open and put the box fan in one of the new master bedroom windows.  Then we all went and sat on the front porch for a bit.

While we were out there, Mr. Charm spotted the Geek’s step-dad out with the cows and stood up excitedly saying “PaPa!”  He took off down the steps and went to the fence, but didn’t see PaPa.  Suddenly he turned and headed towards the barn.  The Geek and I both shouted “NO!”, but it didn’t faze him one bit.

I ran across the yard to him and said “Mr. Charm, you don’t have any shoes on!  You have to have shoes on to go to the barn.  Come back inside and get your shoes, and then you can go see PaPa.”

He hesitated for a second, then turned and ran back into the house.

I’m telling you, this kid is going to be just like me.  I always needed an explanation for why I had to follow a rule, and it had to make sense to me or I would still disobey.  The shoes rule must make sense to Mr. Charm, because without it existing AND being logical, he would have ignored me and kept on running.  Wow.

So we got his shoes on and went to see PaPa.  He was feeding the cows in the big pasture, and Mr. Charm dragged me through the gate and into the big pasture to be with him.  The cows were right there.  Mr. Charm started to run up to them while screaming “COW!” and I yelled and ran after him.  It started a mini-stampede as the cows high-tailed it away from us!

When I caught him, and we stood still for a few minutes, the cows came meandering back.  Mr. Charm was beside himself with excitement!  He only ever gets to see the cows through the fences – having them right there was just WAY too cool!

So PaPa and I talked cows for a few minutes, and then he pointed to one and said “See that one right there with the horns?”  I looked, and asked him “Number 41?”

“Yeah,” he said. “That’s the one we’re takin’ down to the butcher for ya.”

Well, darn.  I have no problems with seeing the animal that I’m going to eat.  (I did when I first moved up here – city girl and all that.  I’m over it now.)  But did it have to be so cute?  It still had that gangly-legged, baby-face look to it!  If I had seen it in the field, I would have told Mr. Charm “Look at the baby!” even though I would have known that it was almost full-grown.  Bummer.

Of course, then Mr. Charm looked at the cows and shouted “EAT!” and I responded, “Yes, baby, we eat cows.”  and I was over it again.

Then Mr. Charm had to follow PaPa to the shop to get a bucket of feed for the cows in the small pasture.  He tried to carry the bucket, but it was too heavy, so PaPa had to walk slowly so Mr. Charm could hold onto the handle with him as they walked.

 

Then they got to the small pasture and Mr. Charm tried to climb the fence.  He made it up three rungs before I grabbed him, and then scrambled up ALL THE WAY TO THE TOP as I tried to get him off!  The little monkey even got a leg over the top rail and was throwing his body forward as I pulled him off.

Just before Mama grabbed him…

For the record, I am SO not ready for him to be climbing fences yet.

We went back inside, and we couldn’t smell the paint fumes at all.  What a relief!  We don’t need a hotel room!

So for dinner I was scrambling a bit, again.

The Geek had chopped up some red bell peppers that were starting to look wrinkly and peeled some carrots while I was gone.  I got some olive oil and onions going in a pan, and sliced the carrots at an angle.  I threw about 3 carrots worth into the pan, and then cut up some carrots to put in the steamer for me.  Then I cut the bell peppers into bite sized pieces and threw them into the pan.  Added some chopped up garlic, some salt and pepper, and then got out the leftover roast.

I broke some of the roast into bite sized pieces and threw that into the pan as well.  Then I grabbed a handful of baby spinach leaves and tossed it in, stirred for about 30 seconds until wilted, and onto the plates it went.

For me, I heated up some more roast beef in the  microwave, added the steamed carrots, and that was my dinner.

I got back to the porch, where the Geek and Mr. Charm were already eating, and asked “How is it?”

The Geek looked up with wide eyes, and groaned “AWESOME.”  He’s always complimentary about my cooking (I usually am a pretty good cook) but it’s not often I get that strong a response!  Feels good, actually.  Especially when I did dinner ‘on-the-fly’, so to speak.

Score!

 

Mr. Charm picked out all the beef and ate it, but he did put a pepper in his mouth.  Then he spit it out.  Oh well. He tried it, I guess.

Then bathtime and bedtime, and now I’m getting ready to clean the kitchen and head to bed.

While we were eating, Mr. Happy vomited a little.  He choked and gagged a bit and looked scared.  Heartbreaking.  He did it again when I was giving him a spit bath on the changing table before bed.  Poor little guy…though, other than that he did really well today.  He was happy, napped better, and slept better last night, too.  I hope he gets some good sleep tonight.  Mr. Charm seemed to sleep better last night, too, so maybe it really was just ‘die-off’ upsetting him yesterday.  I hope he sleeps well again.

Not a lot of hours in today for me, but I did manage to get some things done.  And now I have groceries!  So tomorrow will be a long day in the kitchen prepping food.

Yup, today was a good day.

A Bad Day

 
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Today was a bad day for me.

We stuck with the diet; it’s already starting to occur to me just how monotonous this is going to get, but I’ll stick with it.

I don’t know how to begin to describe why this day was bad.  Lots of little things just added up to a general sense of being overwhelmed, depressed, scared, anxious, and downright tired.

The GI doctor finally called back.  Or, to be more specific, his nurse (“she who is hard to understand”) called me back.  She wanted to know what I wanted to ask the doctor, and I barely got out a quarter of the things I wanted to talk about before she said “OK, I’ll let the doctor know.  We’ll call you back.” and hung up the phone.

I’m frustrated.  We are blessed in the fact that a doctor was able to diagnose this condition before Mr. Happy truly suffered for a long time.  We are blessed that we have an FPIES knowledgeable doctor on our ‘team’.  But I am growing increasingly frustrated with the conflicting orders from the two doctors on Mr. Happy’s team, and the lack of follow-up from the GI doctor.

I’m irritated that nobody mentioned the phrase “FPIES” to me in the hospital; I’m irritated that the doctor so nonchalantly dumped the diagnosis on me in the hallway as our appointment ran over…and frankly, I wouldn’t have even gotten that if I hadn’t insisted on seeing the doctor again.  What would have happened if I had let the nurses run me off without insisting on that further conversation?  I shudder to think…

So, the irritation from being left hanging in the wind by the so-called experts is mounting every day.

It’s that sense of being left hanging in the wind that is growing a sense of despair in me.  My best resource for information right now is a BabyCenter message board group of FPIES Moms.  They are the TRUE experts in this uncertain road of treatment, and they have given me fabulous information so far.  However, none of them are obligated to feed me data, so I only get answers when they’re able and willing to do so.  And often the answers leave me with more questions, which means I ask more and wait to learn more.

I’ve also found some blogs that are truly helpful.  The FPIES Toolbox one that I linked to before is fabulous, if a bit too technical for me at this time.  I’m sure as I delve more deeply into this, I’ll become well practiced at using phrases like “T-cell responses” and such.  However, the author of that blog also writes a more personal blog about her sons’ journey through FPIES, and while it is incredibly informative (in a way I can digest at the moment) it is also incredibly depressing.  (Not that she means to be – oh, no!  In fact, her faith is inspiring, her children are amazing, and her persistence is motivational.  It’s just that she’s been on this FPIES journey with false steps, missteps, confusion and stress for longer than me, and I’m starting to see what my future might resemble on this path.)

I’ve read, thus far, up to the point where her son has been diagnosed with FPIES for a year – and all he can safely eat is millet puffs and peaches.  She has to make a homemade formula for him out of Hemp milk, Arrowroot starch, Safflower Oil, and Hemp Protein powder, as her son is highly reactive to corn.

This scares the crap out of me, as I suspect Mr. Happy is reacting to corn as well.

I’ve spent more time on the phone with manufacturers the last few days asking about “derivative ingredients” of their products than I ever thought I would in my life – and  I know this is just the beginning.

I’ve had to call the butcher that is processing our cow next week to ensure he doesn’t spray citric or lactic acid on the meat (as is common in butchering practices) because those are made of corn.  Doing so would defeat the purpose of our asking for a grass-fed bovine.

I get mixed answers from the allergist and the GI doctor – when I can get them on the phone – so I’m left researching for myself.

I read these other Mom’s stories and learn that this is normal.  Most children with FPIES do have a team of specialists in place, but most of their true “Doctoring” comes from their suddenly well-educated Mothers’; from the people who love them so much that they devote their time and energy relentlessly to study the unstudied, to learn that which has been ignored by the medical community thus far.

It’s terrifying, and isolating.  My dearest wish is to become friends with some of these women so I don’t feel so alone.

Because if I thought the road was rocky when dealing with Mr. Charm’s IgE Egg allergy and his Dairy Intolerance (which I now suspect is actually a non-IgE mediated allergy), I was living in la-la land.

Walking the road of FPIES has already proven to be like forging a path through an overgrown jungle, filled with poisonous creatures, pit traps, and a dearth of drinkable water.  You don’t know which way to go, but you must go someplace, so every step is filled with trepidation.

An encounter with my in-laws today brought the recognition that I will face doubting Thomas’ at every turn in this new path our lives have taken.  Comments like “You’re starving that boy to death!” – referring to Mr. Charm – and “Well, there’s not that much corn in Sprite” are, to me, ignorant and demeaning in the extreme…but I know they didn’t mean to be that way.  At least, I hope they didn’t mean to be that way.

My path as Mother to my children and Matriarch of my family has suddenly become so uncertain and rocky that it is all too easy to doubt the decisions made.  Any lack of support, any signs of incredulousness from just about anyone at this early stage is ultimately deflating.

The truth is, I know there is something going on with Mr. Charm more than just the egg and dairy troubles we already know about.  In my gut, I know.  He is not being starved.  He may suffer from lack of variety in diet for a while, but it isn’t permanent, and we checked with a nutritionist to ensure that we all, but especially Mr. Charm, would be well-nourished through this trial.  No one that I have ever heard of died because they were bored with the food they were offered.  Frustrated, yes.  Angry, almost surely.  But died?  Nope.  He’s getting enough food, and it’s going to get better as I learn more about what I can feed him that is tasty and good.

Whether he, or anyone, likes it or not, it simply must be done.  It is the only way to find out what else may be happening with his little body.

As for my diet?  I feel guilty that I’m eating so many things on my elimination diet for Mr. Happy.  I have eleven items in my menu.  Take away salt and pepper, and I have NINE things that I can eat.  I’m scared to drop it further until necessary because I’m already struggling to ingest enough calories to keep breastmilk production at acceptable levels.

The irony is killing me.  I downloaded an app for my iPhone to help me track calories to LOSE weight.  Now, it daily tells me that I haven’t eaten enough.  To lose 1/2 pound a week, I’m allowed 1,985 calories per day.  Breastfeeding consumes (as near as I have figured) approximately 400 calories a day.  So, I need 2,385 calories per day to barely lose any weight and continue to provide nourishment for my baby.

Today, with three square meals and hours spent in the kitchen, I managed to ingest 1,670 calories.  At this rate I’ll drop weight like no one’s business, but at the expense of my milk production.  I would gladly gain weight to continue nursing my son, but it looks like even maintaining my weight will be almost impossible.

I’m so grateful that the Geek is on board with this.  In reading about food allergies over the last two years, I’ve read some women comment that their husbands or parents don’t believe in the diagnosis, and willfully sabotage their children.  The thought of that horrifies me.

The Geek and my family are a tremendous support for me, truly.  Today, though, I feel like their support is a 5-point harness in my car…but that my car is careening off a cliff and I’m not in control to fix it.  It feels like that great 5-point harness is just not enough to protect me from the drop up ahead.

Because, you see, while I’m talking so much about being overwhelmed and scared, uncertain and isolated, the fact remains that it truly is NOT about me at all.

It’s about my two beautiful little boys, and what I have to do to keep them healthy.

I wouldn’t be nearly as scared, nearly as overwhelmed, nearly as uncertain, and not at all isolated, if the health concern was mine.  Me?  Pshaw!  I’ll deal with it.

My babies?  Dear God in Heaven Help Me.  On this one, I can’t screw up.  The burden of doing right by them is huge, and today was a day where I did not feel up to the task.

The truth is, though, that I AM the Mommy.  The Mama-Bear.  Their Advocate.  Their Voice.  The ONLY way I’m going to properly take care of my sons’ is to stand firm in my resolve, listen closely to my instincts, push-push-push on the doctors, and do what needs doing regardless of the cost, effort, or drain on myself.

Today I just began to feel the cost, effort and drain on myself, and it scared me and brought me low.

Today, L and N from church came to collect the groceries from my home that we can no longer eat.  Two full ice-chests, one large laundry basket full, and 8 – or was it 9? – grocery bags later, my kitchen is almost bare.  I gave away hundreds of dollars worth of food because it was either a known poison or a suspected poison for my children.

I’m glad I gave the food to them; their family is heavy with children and I know firsthand that feeding those growing, hungry mouths gets costly.  That’s not my problem.

My problem is that I doubt whether I should have given it away.  Maybe he won’t be sensitive to corn.  Maybe he won’t be as reactive as I’m feeling he will be in my gut.  Maybe we’ll pass trials so fast I’ll have to re-purchase those foods sooner than I thought I would.

Maybe, maybe, maybe…

But I had a good reason for clearing my cupboards.  My biggest fear right now is accidentally giving either of my children a food that hurts them.  And if the food is there in my pantry, I may, in my exhaustion, forget to double-check the ingredients and feed them something they shouldn’t have.

Watching Mr. Happy vomit, go limp and lethargic, spending another night in the hospital, continually changing diarrhea diapers that I know are painful for both of my sons, is reason enough to rid my house of those foods because I hate experiencing those things.

With FPIES, every food trial that fails will set us back weeks in our journey.  Not only must you wait to see if there is a reaction, which can take 2 weeks (or longer, for some kids), but you must then give their little intestines time to heal from the damage if the food is a fail.  That can take 2-4 weeks, depending on the severity of the reaction.

I’m willing to walk that scheduled path to trial new foods, but when I do, I want to be absolutely certain of the offending food.  I don’t want to be confused because there was a trace of citric acid in a can of peaches.  I don’t want to make my child sick needlessly.

So while I know that some may shake their head in shock and dismay at the tossing of so much food and money out the door, while some may try to tell me that a food is safe when they haven’t done any research about either the food or the disorder, while I stress as I watch the medical bills file through the door and know that I’ll have to spend even more money than we can afford on pure ingredient foods and supplements, while I know that we will not be able to eat anything made outside of this house for at least two years, while I know that Thanksgiving and Christmas will be spent at my house – thus disappointing family we cannot visit or subjecting them to the same limited diet, I have no choice.  I must return to that source of Mother-strength within me and the strength of God and forge a path through this forest, because my children deserve no less than everything I can give them when it comes to their health.

And anyone that tries to bring me down can just turn around and walk away.  I have no time or energy to deal with idiots.

Elimination Diet – Day 2 (Mama Gets Strict!)

 
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Yesterday I got the news that we could use the probiotics on Mr. Happy.  We decided to use the same probiotic on Mr. Charm, since the children’s had corn it in.  So today, my boys both got probiotics in their beverages.  (Mr. Charm had been taking the corny one for a few days.)  I am hoping so very much to see an improvement in them over the next couple of days.

In fact, Mr. Charm is already showing signs of improvement, at least as far as attitude goes.  Today he was most definitely TWO – wanted to look at what he wanted to look at, didn’t want to listen, etc. – but he was somehow more mellow and agreeable about it all.  We had a blast today, and he was downright affectionate…more than he normally is!  I hope this is what “Mr. Charm” is like underneath his food irritations and unhealthy gut flora…THIS is the boy I remember when he was younger.  He’s only shown up sporadically for a while, so I hope he’s here to stay.

Well, on to the diet.  This morning I made potato pancakes.  I took mashed potatos and browned ground beef, mixed them together, and fried 3 inch rounds of them in olive oil.  Quite yummy!  The Geek and I each ate 6 and Mr. Charm – thank the Lord! – ate 3.

Then the Geek and I each ate a bowl of cantaloupe and honeydew melon, but, again, Mr. Charm wasn’t having any of it.

I went over and checked on the dehydrator, as I had sliced up a whole cantaloupe and put it in the dehydrator the night before last.  They looked pretty done, so I took them out and put them in a Ziploc bag.  Mr. Charm was curious about them, and when I handed him a piece he scarfed it down!

We finally found a way that he will eat melon – dehydrated!  He ate the equivalent of about a quarter melon today in dehydrated fruit.  Score!

Then I had to go to the dentist.  I’ve been having pain in my lower right jaw/teeth, plus I was due for a cleaning.  So off I went with the two kids in tow.

I was planning to head the opposite direction and make another shopping trip to the health food co-op, so I had the car loaded with food to return, snacks for us, and an ice chest for perishables in case I needed to be out longer than I planned.

We got to the dentist and let me tell you – Mr. Charm was an absolute angel!  He stayed in the stroller the whole time, playing with my car keys and a flash drive, and snacking on his dried cantaloupe.  Mr. Happy was actually the difficult child – he got tired of being in the carseat and I had to hold him on my lap for the last half of the cleaning!  But really, it went a ton more smoothly than taking two small children to the dentist should go.

Turns out, I’ve been grinding my teeth, and that’s the reason for the jaw pain.  So, I’m wearing a night guard now.  Joy.

On my way out of the office I saw I had a missed call.  With an area code where Mr. Happy’s pediatric GI is based.  Great.  I finally get a call back and I missed it.

So I pulled over on my way out of town to call him back.

Turns out, it wasn’t the doctor, it was his nutritionist calling me.  She wanted to go over Mr. Happy’s caloric intake, because I’d left a message asking about the 8/8 versus 6/8 formula to water ratio experiment last weekend.  They were concerned, I guess, that I was starving my child.

Well.  Here I am, needing to talk to the stinking doctor and instead he has his nutritionist call me to make sure I’m not starving my child.  No, I’m NOT starving my child – I’m starving ME FOR my child, though, and would like your input on the matter!  Ugh!

I talked with her for a while, though, hoping she’d have a few answers to some general questions I had.  Then she transferred me and I left another message for the doctor.

By that point, I knew Mr. Happy had a diaper, and as he was wearing the last one we had I decided to swing by Wal-mart to pick up some more.

Mr. Charm had a great time in the store, as always, and amazingly enough, was really pretty good.  Only towards the end did I have to break out the middle name to get compliance (which never works on him, by the way, but I keep trying).  We got my new night guard and diapers and headed back out to the car.

By then, it was 4:30 p.m., and frankly I was too tired and it was too late to try and make it back to the co-op.  So, we just went home.

When we got home, Mr. Charm helped me eat the huge bowl of melon I had packed to take on our errands.  He actually ATE melon!  I was so excited!  He took his time with it at first, but finally started snacking away.  And it was so cute – he wanted very much to feed me.  So I got pretty good at chewing even larger mouthfuls of food than I normally take.  He’s very persistent, after all.

The allergist sent over some Ele-care for us to try, and we immediately started Mr. Happy on the new formula.  It’s too soon to tell if it will work for him or not, but he did seem to like the way it tasted better.

Dinner tonight was leftover pot roast from last night.  Tonight, Mr. Charm ate very well.  I was so relieved!

I was planning on expanding my food repertoire a bit for this diet, using quinoa and other items in creative ways.  I will still do that for the Geek and Mr. Charm, but I got some input from the FPIES message boards that has me rethinking my 33 item menu.  The new plan is for me to stick with what I’ve eaten for the last two days, and eat nothing but those things until I’ve been nursing him for about 4-6 weeks.

The whole idea is for me to clean out my system so Mr. Happy won’t react to anything I’m eating.  The ladies pointed out that it’s safer to start small and grow, because it’s easier to find the problems if and when they arise.  So I’ll go smaller, and if he has problems with my diet after a few weeks of nursing on it, I’ll drop to extremes – 2-4 items on my menu.  Let’s hope it doesn’t get to that.

So, if I wait another week or two to start nursing him again, we’re talking 6-8 weeks of eating nothing but: beef, potatos, carrots, onion, garlic, olive oil, salt, pepper, honeydew melon, cantaloupe, decaf tea with stevia, and orange juice.

I’m not thrilled, actually.  It’s going to be hard to get the caloric intake I need to keep my milk production up high enough.  I *may* consider adding in the three ingredients I would need to make my homemade ice cream, just for the fat/calorie intake.  Then again, I may not.

Today, Mr. Charm and I did well on the diet.  We ate all day long, but we stuck to the menu.  The Geek, on the other hand, cheated while we were out, and finished off the last of the bread we had with some turkey sandwiches.  Well, it’s not as important the he follow the diet, and now there’s less tempting food laying around the house for me to see!

Mr. Happy was his normal happy baby self.  He did throw up twice, and had a couple crying episodes that weren’t explainable, but otherwise he grinned and smiled and was a happy little boy.

Tomorrow I’m planning on more potato cakes for breakfast and another roast for dinner.  Yum!

Our Elimination Diet – Day 1

 
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Today was the first day of our whole family elimination diet.  I think I jumped into this before I was ready…

When I arrived in the kitchen this morning to make breakfast, I realized the only pineapple we had was in the little tubs.  Okay, no problem, those will be fine in a fruit smoothie for breakfast.  Until I read the ingredients.  ’Citric Acid’, it said.  Drat!  That’s another word for ‘corn’, which is a no-no on our new regime.

Well, okay…but see, cantaloupe and blueberry doesn’t sound very yummy for a smoothie combo.  So…what else is there?

No, seriously.  What else is there?

I ran out to get some small steaks from the freezer to quick thaw and cook up with some potatos, but guess what?  No steaks.  I’m full-up on roasts, but not a single steak to be found anywhere in this house.

So, I decided we’d do an ever-so-healthy all-fruit breakfast.  In fact, I thought a melon breakfast sounded pretty good.

Cantaloupe?  Check.
Honeydew?  Check.
Watermelon?  Er…nope.

OK, so cantaloupe and honeydew will just have to do.

Mr. Charm refused to eat a single bite.  He wouldn’t even smell it or touch it or lick it.  It was as if the sight of the fruit offended him.

And I had absolutely nothing else I could feed him.

So, he went hungry this morning.  Which made for a l…o…n…g morning, if I do say so myself.

Right after I finally got the chance to eat (between Mr. Charm being a horrible version of himself and Mr. Happy needing diaper changes and bottles, I finally ate at 10:30 a.m.  We were up at 7:00 a.m.) I grabbed a pound of ground beef and a roast out of the freezer.  Threw them into the microwave to start defrosting.

Got the ground beef defrosted and chopped up some onion, started making patties.  Grabbed a few potatos and cut them into fry strips.  Hamburgers and french fries for lunch, everyone!

I had the fries in the pan cooking, and had just gotten the hamburger patties in the pan when – wait for it – all the electricity goes out.

I have an electric kitchen.

This sucks!

Well, the Geek got a late start this morning because of the bad nights sleep Mr. Charm gave us, and before he could leave for work he got busy solving a problem for a client from home.  He spent so much time here taking care of the problem, he finally called his boss and said he probably wouldn’t be physically in the office today because he couldn’t get enough downtime between catastrophes to allow for him to drive in to work.  B was okay with that, so here was the Geek, working from home.

On the computer.

And we have no electricity.

Break out the generator, guys!

Somehow, and I don’t know how because *I* wasn’t involved in this in any way, but somehow all the gas cans were empty.

So the Geek drove down to the store to buy some gas, leaving me at home, in the dark (we were finally getting rain and had little ambient light) with Mr. Charm, who was like the Tazmanian Devil on crack, and Mr. Happy, who was in the middle of a complete FPIES reaction.  Nice.

After being vomited on twice and doing my best to console an inconsolable Mr. Charm as he screamed in pain, the Geek came back and got the generator going.

He pulled down the electric skillet that he owned before we met and I wisely decided not to throw away when I was merging households.  Plugged in the electric skillet, started cooking again, and less than ten minutes later we all feasted on a really good meal.

Because the potatos got interrupted in their cooking, they were basically fried twice.  I had heard that technique makes for the best french fries, but never had tried it until now.  Let me verify for you that it DOES, in fact, make the best french fries to fry them twice!

Since we had power again, I went ahead and finished throwing everything into the pot for the roast.  It will be a little late tonight, but we will, at least, have dinner.

I felt like I was scrambling all day long to find foods.  Every item on the list that we made tastes good to me, and I thought I would have no problems putting them together into yummy (if limited) meals.  I think I was overconfident.

So for tomorrow, I’m already cooking up breakfast goodies.  I browned off some ground beef that I didn’t use in today’s hamburgers, and I’ll make some mashed potatos.  Mix the ground beef in with the mashed potatos, and cook them up like pancakes for Breakfast Potato Pancakes!  Hopefully, Mr. Charm will like them.  <cough> Hopefully, I will like them!

I really have no idea for lunch tomorrow, because we have to be in town for my dentist appointment at 1:00 p.m.  And dinner, I guess, will be roast.  Again.

Our cow will be butchered next Monday, so hopefully by the end of next week or first part of the week after we’ll have a little more variety in our meat.  Steaks and hashbrowns would be a nice change for breakfast some days.

Tomorrow, though, I’ll be heading in to town to buy diet necessities – such as some quinoa.  I’ve been looking up some recipes today, and one of the FPIES Mommy blogs I read talked about a 4-ingredient muffin she makes for her son.  I’m thinking I can experiment and find a ‘safe’ ingredient quinoa based blueberry muffin for breakfast.

Not to mention there will be the possibility of using quinoa in place of rice in my stuffed pepper recipe, plus some other options to use quinoa in things like flatbreads.

I think quinoa is going to be my unexpected saving grace this month.

I have a tray of oven baked potato chips going right now for a snack for Mr. Charm, and tomorrow or Friday I’ll try to make Kale chips.

I’m scrambling, but coming back quickly!  I think I can figure it out.

_____

In other news, the Allergist called back and said she’s going to mail me two cans of Ele-care to get started on that as soon as possible.  She’s also researching more into why Mr. Happy is like this; apparently a mother passes IgG and IgA antibodies into the baby when pregnant, and they hang around for a while after birth, so she and a colleague are exploring the possibility that something in my body set his immune system up to be sensitive and reactive.

Honestly, I don’t really know what that will do for him, treatment-wise.  I’m more concerned, at the moment, with getting him on a baseline.  <shrugs> We’ll see what she turns up.  Maybe there will be something useful in this information.  Still, it seems to me that she almost wants to prove that he is allergic to my breastmilk – not something in my breastmilk, but the milk itself.  Wonder if she gets a kickback from Ele-care??

I also called the manufacturer of Culturelle, a probiotic maker, and asked questions about their ingredients.

Turns out, their childs probiotic has a corn-derived ingredient in it but their adult probiotic does not.  So she suggested double checking with my doctor, but breaking open the adult capsule and only dumping half of it into the kiddos bottles.

The allergist agreed, so now we can start rebuilding Mr. Happy’s gut flora, which will hopefully help him reduce inflammation from his FPIES trigger foods, and thereby reduce reactions.  Yippee!

Here’s hoping I can find some yummy stuff to make with the quinoa!  And if anyone has any ideas, please let me know!

So it Begins…

 
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We visited the dietician today, and she really didn’t have too much to add to our rough draft diet. She made a few suggestions of things that would be good to add, and offered advice on a few things that we might be surprised were allergens – like olive oil and stevia. Otherwise, the most useful thing we got out of the visit was a website listing almost all vegetables by their family. For example, beets, spinach and quinoa are all from the same family, so if you have a problem with one you may have a problem with the others.

In the end, our family elimination diet is probably much larger than what most people would think of when thinking of an elimination diet, but it is still fairly small and restrictive. I’m trying to keep in mind the quality of life for my husband and older son as well as the needs of my youngest son. If he still shows reactions when I’m eating this way, I’ll leave the Geek and Mr. Charm to go ahead with adding things to their diet, and I’ll drop down to just 3 or 4 things and work up from there.

So, here goes. What our Family will eat for the next 4-6 weeks:

Beef (grass-fed, hormone free)

Quinoa
Russett Potatos

Lettuce
Spinach
Kale
Chard

Cucumbers
Bell Peppers
Tomatos
Carrots
Beets
Celery
Onion
Garlic

Honeydew Melon
Cantaloupe
Watermelon
Pineapple
Blueberries

Honey
Olive Oil
Coconut Oil
Salad Vinegar
Salt
Pepper
Basil
Oregano

Tea
Stevia
OJ

Cocoa Powder
Coconut Milk

Nutritional Yeast?

The nutritional yeast we may hold off on. She pointed out that some people are allergic to the yeast, and Mr. Happy does have an overgrowth of candida in his gut right now. Probably it is from the anti-biotics in the hospital, but until I can find a safe probiotic for him to take, we’ll probably wait on that one.

So that’s 33 items to eat for 6 weeks. 34 if we can add the nutritional yeast back in. Not a lot…but I can make homemade potato chips, kale chips, and dehydrated fruits for Jed for snacks, and smoothies for breakfast, and salads for me and the Geek to eat at dinner and lunch, and Pot Roast – one of our FAVORITE meals – is still totally on the table.

I think we’ll survive.

One thing, though…the Geek has to leave the store when we get to the checkout stand. The cost of these organic, free-range, locally grown ingredients is rather daunting! (And if we’re trying to eliminate cross-contaminants and eat as healthily as possible, may as well go organic and local. Less chance of a corn spray being used on the produce, if nothing else!) Good news, though, because that’s really all we have to buy for the month!

I’ll keep you posted about how it goes.

My New Reality

 
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This morning I called both the pediatric Allergist and the GI doctor.  I wanted to tell them about Mr. Happy’s increasing reaction to the Neocate, and our experiment this weekend with dilution.

The GI was in labs all day, so his nurse (who was barely comprehendible) took a message and said he would call tomorrow.  The Allergist called back today, and agreed that it sounded like Mr. Happy was having a reaction to the Neocate and asked how she could go about getting WIC to change our prescription.  She also agreed with me that there was concern over diluting the formula long-term, not just because of caloric and nutritional intake, but also because of too much water wrecking his sodium levels.

I called the WIC office later in the afternoon to ask if they had received the information from the Doctor, and they had.  They asked that I call them back tomorrow to find out when the new formula, Ele-care, would be delivered.

Fingers crossed that he takes to the Ele-care better than the Neocate!  Or, at the very least, that it re-starts the reaction process to buy us time for my system to clean out somewhat on the elimination diet so I can start nursing him again.

Later this evening, I was back to reading my FPIES Mommy-blogs and I had a sudden, rude awakening.

To backtrack, the ingredients in the Neocate are: Corn (57%), Safflower Oil (7%), Coconut Oil/Palm Oil (7%), and Soy (6%).  The remainder is a “less than 2% of the following” list of vitamin additives.  So, the liklihood is that Mr. Happy is reacting to the Corn or the Soy in the formula, as those are the two most reactive ingredients in the list.  Coconut Oil would be my 3rd choice for possible reactions.  Still, with Corn at 57% of the ingredient list, it takes the lead as the most likely trigger food.

Therefore, we should most diligently avoid corn for the near future, so as to avoid accidentally triggering him until we’ve established a firm baseline and can therefore ‘scientifically’ test him for corn.  Logical, right?

Ahem.  Here’s where I got my education.

Did you know…table salt has corn in it.  Children’s Benadryl has corn in it.  Children’s Tylenol has corn in it.  The spray that they use on fresh fruits and vegetables in the grocery store to keep it fresher longer has corn in it, even!  Kids put everything in their mouths…paper, bits of sheetrock, cupcake baking cups – all of which have corn in them!  Corn is freaking WORSE than dairy and soy!  It’s in everything, and it does NOT have to be labeled as an allergenic food!  UGH!

Even better?

Prevacid has DAIRY in it!

Please bear with me as I remind you of the fact that Mr. Charm TOOK Prevacid for the first oh, 9-odd months of his life, and Mr. Happy was recently prescribed Prevacid the day he entered the hospital.

May I remind you also that Mr. Charm has a DAIRY intolerance, and Mr. Happy has a 4+ IgE, Epi-pen-worthy allergy to DAIRY.

(Please excuse me while I mutter a curse and an oath and stomp around in frustration.)

The only solution to this is to have the pharmacy specially compound these medications to be dairy, corn, food color, whatever-else-free.  We do not know if this requires a doctors prescription, or if it is something we can simply request.  We get to start learning about that process tomorrow.

At this point, the Geek and I are going back and forth about whether or not we should make corn the first trial food for Mr. Happy once we’ve established a baseline for him.

On the pro side of the argument, then we would know whether corn is a ‘fail’ food for him and needs to be avoided.  That’s always a nice feeling…knowing something is better than guessing.

On the con side of the argument, it is incredibly common for an FPIES child with a mild sensitivity to a food to become HIGHLY sensitized to the food after trialing it.  Which means, we may be able to get away with trace amounts of corn in foods at his current level of sensitization, but after a trial, we would not be able to and he would wind up in the ER often for trace contamination.  (See my very small, incomplete list of things you can find corn in above as evidence of trace contamination.)  This would not only suck from a “my child is in the ER” perspective, but would also make food trials  more difficult.  Did he react to the ____ or the corn that was in ____?

See what I mean?

I’m kind of leaning towards NOT trialing corn right away.  I’m actually leaning towards playing the “better safe than sorry” angle and not trialing corn until he’s closer to 2 years old.  It’s sort of like taking your child to the ER.  If you don’t take them, you can easily tell that you should have.  If you do take them, you may never know if it was completely necessary or not.  But your child will be safe and healthy!

If we don’t avoid all corn, we may find he is incredibly sensitive to it and our ability to safely trial foods and keep him healthy will be compromised.  If we do avoid all corn, we may never know if he is truly sensitive to it or not.  But he will certainly be safe and healthy!

Rock, meet hard place.  Hard place, meet rock.

Welcome to my new reality.

First steps first, though…let’s hope the new formula takes to him better.  And with the revised list of ingredients in the Ele-care, we may be able to whittle down the potential allergen list even smaller than it already is.  It will still probably take a week or more for WIC to get the formula for us, so I guess the first step is to actually keep praying that Mr. Happy doesn’t progress in his reactions straight into the hospital again.  He is absolutely showing build reactions, and they appear to be building more and more.

In financial news, after talking with a few friends about how much their hospitalizations cost, we’re visualizing the worst-case scenario.  And honestly?  We can’t imagine how on earth we’re going to pay for the medical bills we’ve already accumulated, let alone any that are to come up over the next few years.  We keep looking for any programs we can get on, but we always make just enough money to not qualify.  The state-established health care for children that is so awesome?  Because we have employer-sponsored health care, we don’t qualify for one version of the plan.  For the other version of the plan?  We make just enough too much to qualify.

So we’re poor enough to be bankrupted by the medical costs, but wealthy enough to not qualify for any governmental assistance for our kids.

Nice.

And yes, that’s with me not working, but when I do go back to work?  My salary is already spent every month on mortgage and child-care costs.  There is no extra for these medical bills unless I work away from home even more than I’m already going to have to. With a child that needs serious monitoring for 7-14 days after introducing every single new INGREDIENT (because yes, I’ll have to spend 7-14 days to see if I can add Cinnamon to his diet), I can’t afford to be away more than I already will be.  So, yeah, my salary will not help dig us out of this hole at all.

Just one more thing to deal with on this crazy FPIES adventure.  Sigh…it was nice planning weekends in the Caribbean for our anniversary this year. Guess we won’t be doing that…or anything else unnecessary for a long time to come.

I will do this and more to keep my children healthy and safe.  It’s just…painful and depressing to think about.

Welcome to my new reality.