The Hoop-Jumping World of Hydrogen Breath Testing

 
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Image courtesy of Grant Cochrane at http://www.freedigitalphotos.net/

Last week I posted about my new suspicion that Mr. Charm may have fructose malabsorption, and my determination to have him tested for the condition.

The day before that post ran, I called our pediatrician to ask what needed to be done to order the test.  I spoke with a new person in her office, and she informed me snidely that the doctor couldn’t just request a test; I would have to bring Mr. Charm in to be examined.  Fortunately, they were able to see him the following day.  (If I had spoken to one of the people I know well in the office, I probably wouldn’t have to have jumped through this particular hoop; I have a certain level of ‘believability’ banked with those that have been involved in Mr. Charm’s care since the beginning, so this was irritating.)

Off we went to the pediatrician’s office.  She took a look at Mr. Charm, pronounced him ‘looking healthy’, but listened to what I explained were my reasons for suspecting yet another  issue with him.  In the end, she looked up Fructose Malabsorption, read about it, listened to my list of symptoms, and agreed that it did sound like a possibility.

Unfortunately, she also had to look up the name of the test he would have to take (meaning she didn’t know much about this) and also did not know where we would go to have the testing done.  She informed me that she would find someplace and call me back.

Two business days later, I called THEM back: had they learned anything?

As a matter of fact…NO.  They couldn’t find a single place in our area to have the test run.  Why don’t I call our allergist or GI to see if they could recommend a place?

OK.  So, I called the allergist.  Three short hours later I received a call back – they had never even heard of fructose malabsorption!  No help there.

So, I called the GI.  I left a message.  Yesterday I called back.  Oh yes, the receptionist remembered me.  She had passed the message along, and I should be hearing from them shortly.

Today I heard back.  Oh, yes! They do that test themselves!  But, you say Mr. Charm is not a patient here?

No, I explained.  His younger brother is, but when Mr. Charm was a baby and we needed a GI we were referred to different one.  Now I’d like their care to be with the same doctor, and we like Dr. G, so, what do we need to do to have the test run?

I explained that my pediatrician would be happy to order the test, as she has examined him and deemed it a worthy test for him to undergo, she just didn’t know where to call for it.

No dice.  He will have to be examined by the GI before he will issue the test.

Oh, and in order for him to be seen by the GI, he’ll have to have a referral from our pediatrician.

So, I called the pediatrician…again…and asked if she would issue a referral to our GI.  They called back a few hours later, “We called in a referral, and they have you booked for January 13, 2013.”

Oh, yeah.  That’s just great!

Shortly after, the GI called back to tell me that they had moved his appointment up to mid-October.  At 9:00 a.m.  In a location three and a half hours away.

Oh, I will be hating life on that day!  That’s a 3:00 a.m. wakeup for me!  Ouch.

But, if I want him examined for the test, I’d better do it.

I’ve already jumped through enough hoops just to get an appointment.

(Please say every medical encounter from here on out isn’t going to be like this!)

Food allergy Mama’s, how high have the hoops been that you’ve had to jump through?

Hamburger Hash

 
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Take out eggs, cheese, and wheat, and what can you make for breakfast?

Not. Much.

For us, just beef and potatos, basically!  That can get really boring, really fast, so I’m always looking for new ways to shake things up a bit.

Here’s my latest breakfast creation: Hamburger Hash!

It’s so simple, it’s ridiculous.  As in, “I almost don’t want to write the recipe down and include pictures for you because it feels like I’m being insulting by doing so” simple.

But, I’ll do it anyway, just in case there is a seriously  kitchen-challenged person out there who would like to try this yummy dish!

So, here’s what you do:

The night before, get out some ground beef to thaw.  About 1/4 pound per person is enough.

In the morning, get out one small to medium sized potato for each person you’re feeding, a grater, and a bowl.   Wash the potatos, then grate them into the bowl.

Get ready to grate!

Fill the bowl with water, until just covering the potatos.

Grated potatos ready for the microwave

Throw the bowl in the microwave for 4-5 minutes to pre-cook the potatos a bit.

Browning the ground beef

Meanwhile, start browning your ground beef.  If you have a delicious grass-fed cow in your freezer, you’ll need to add a little oil to the pan first.  Otherwise, just brown away!

Drained potatos ready for the frying pan

When the potatos are done in the microwave, drain them and be ready to add them to the frying pan when the ground beef is mostly browned off.

Mixed and starting to cook

Toss everything together in the pan until it is mixed well.  Let it cook for a while like that without stirring.

Every few minutes, give the pan a good stir.  You’re shooting for browns,  here, so you have to let the potatos brown a bit and get that yummy crispiness to it in spots.

Starting to brown…

When it’s brown enough to suit you, serve it up!

Good start to the day!

Throw a little salt and pepper at it, and enjoy a delicious breakfast!

The first few times I made it, I tossed onion and garlic in the pan to soften before adding the ground beef, and that really makes a nice addition to this recipe.  I strongly recommend you do so, if you can.  Since I’m suspicious Mr. Charm has a fructose issue, I’m experimenting with reducing the fructose in his diet right now.  This means no onion and garlic in his meals, and since it seems pointless to make two dishes for our meals (one with and one without onion and garlic) I’m going without, too.  Bummmm-er.

One day, when we have more foods in our diet, this recipe is ideal for the addition of some veggies: bell peppers, chopped carrots, some spinach leaves, etc.  Get creative!  You really can’t go wrong; and for the dairy tolerant out there, cheese would probably rock this breakfast!

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HAMBURGER HASH

-1 small/medium potato per person
-1/4 pound ground beef per person
-onion (optional)
-garlic (optional)
-additional veggies (optional)

  1. Thaw the ground beef.
  2. If using onion and garlic, start it softening in a frying pan with a little oil.
  3. Grate the potatos into a bowl; cover with water and microwave for 4-5 minutes.
  4. Brown the ground beef almost completely in a frying pan.
  5. At this point, you could add any other veggies you would like to add.  (Spinach, carrots, bell peppers, etc.)
  6. Drain the potatos and add to the ground beef.  Stir well.
  7. Stir every few minutes to let the potatos brown, but not burn.
  8. When it looks brown enough for you, serve it up!
  9. Enjoy your breakfast!

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What additions would you make to shake this up a bit?

This post has been shared with Allergy-Free Wednesdays, Whole Food Wednesdays and Real Food Wednesdays.

Ten Things I Wish I Had Known When My Kids Were Diagnosed With Food Allergies

 
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Image courtesy of winnond at http://www.freedigitalphotos.net/

The day Mr. Charm was diagnosed with MPI, I felt my world crashing around my head.  If internet chatting is any indication, my experience was not unique.  Most regular pediatricians are not terribly helpful in giving you good tools to cope with such a diagnosis.

Here’s what I wish someone had told me when I started this journey two years ago.

  1. It’s not the end of the world!  It’s the end of the world as you know it, but soon you WILL learn a “new normal”.  Remember that when the days are especially hard.
  2. The kitchen is your friend.  You WILL be cooking a lot more, so invest in whatever kitchen tools you need, if you don’t already have them.
  3. Google is your friend.  Start searching for “(insert food allergy)-free recipes” and you’ll easily find things you can safely feed your child.
  4. Pre-packaged foods are your enemy.  There are a few brands (like Enjoy Life) that are allergy-free/friendly, but be wary of almost all pre-packaged foods until you have some experience under your belt.  Cross-contamination is HIGH in processed foods.
  5. Learn how to read labels.  Print out a list of common ingredients that contain your allergen and carry it with you when you go grocery shopping.  In fact, get a sitter for your child and plan to spend at least 3-4 hours in the grocery store the first time, reading labels.  You’ll get better at spotting danger and shopping won’t always take so long, but the first few times you go you will need the time and freedom to investigate everything.
  6. Understand that there are people who will not understand what your child’s food needs are, and even some who will directly undermine your allergy-free efforts.  Accept this, plan for it, and be grateful for the people who WILL understand and help.
  7. If your child is school-aged, look into the laws for 504 plans in your state.  Meet with your child’s school to arrange one for your child, based on their needs.
  8. There is no such thing as a stupid question.  If you don’t understand something, don’t stop asking for an explanation until you completely understand the facts.
  9. No one knows your child like you do.  Period.  If something is wrong in your mind, then something is wrong, regardless of what the doctor or test results may say.  Don’t stop pushing until you are satisfied your child is being helped properly.  You WILL be the best advocate your child has.
  10. Learn to forgive yourself.  It is inevitable that you will slip up somewhere along the way and inadvertently give your child something they are allergic to.  Watching your child react is horrible, and it is worse when you know you could have avoided it if you’d paid better attention or known something about an ingredient sooner.  But it happens to the best of us.  Extend grace to yourself, solve the problem, and learn from it…then move on.  Your child will continue to love and trust you regardless.  I promise.
  11. BONUS!  (I thought of one extra perk to share.)  When you someday get the chance to eat at a restaurant again?  You’ll discover the food tastes AWFUL!
Fellow food allergy Mama’s, what do YOU wish you had known when your child was first diagnosed?

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This post has been shared with Allergy-Free Wednesdays.

Avoiding the Doctor’s Office…On Occasion, At Least!

 
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Just what I like to see!

Food allergy Mama’s are well-familiar with having to test diapers for blood.  You give the diaper to the tech, they go away for a couple minutes, come back in and announce the verdict.

If you have ever witnessed the test, they swipe some stool onto two spots on a little cardboard test, drop some liquid on the spots, and watch to see if the color changes.

Simple, right?

Looking over the medical bills we’ve been getting in, I noticed that for every time we take a diaper in to the doctor to test for blood in stool, they charge our insurance company $28.00.

Seriously?

I’m no huge fan of insurance companies, but that just seems ridiculous! Especially when the Geek and I went online and bought a box of 34 tests that are nearly identical to the ones the doctor uses for a mere $55.26 (plus shipping).

While that may seem pricey, it’s actually a huge savings for us: it is approximately 30 miles one way to my pediatrician’s office, which means 60 miles of driving every time I need a diaper tested.  Gas runs about $3.65 these days.  I get 17 miles to the gallon.  (I know, I know, it’s terrible!)

So do the math!  $12.88 for each individual diaper I get tested (not counting the effort involved in sherpa-ing the two kids to the car, the time involved driving, and the wear and tear on the vehicle) or $1.89 per diaper to test them at home?

They’re also a sort of no-brainer: swipe the stool onto the front of the test, close the cover, open the back cover and drop the liquid (hydrogen peroxide!) on the two spots, and if the test field turns blue by 60 seconds, it’s positive.  If it doesn’t, it’s negative.  (Though, I did have a confusing moment when it once turned green – turns out that’s a signifier of bile in the stool.  Totally different problem!)

A little green, so I got confused for a minute! At least it isn’t blood!

So if a test is positive, THEN I will drive to the doctor to let her test it so she can note it in her handy little (thick) file for Mr. Happy and we can proceed, but at least I’m saving myself trips if it is negative.  

Not to mention the peace of mind involved in getting an instant answer, rather than having to wait til the next day!

So fellow food allergy Mama’s, that’s what I would recommend to you.  It may not be worth it if you live very close to your pediatrician, but run the numbers on gas costs and you may find buying the testing kit yourself to be well worth the expense!

Once a Girl Scout, Always a Girl Scout

 
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I lived through September 11th.

I sat in my house while Hurricane Ike wreaked havoc, and survived over a week without electricity after the storm waned.

I got married in the aftermath of a major ice storm that knocked us out of power for over two weeks.

I live in the country and lose power and water regularly.

I’ve learned the value of being self-sufficient.  You don’t have to be a doomsday-er to see the potential for a breakdown in the systems on which we rely.

Consequently, I try to Be Prepared.  (That whole Girl Scout training kicks in at some strange times, doesn’t it?)

I keep bottled water, just in case.  I keep flashlights in standard locations, just in case.  I have other preparations that have become normal, just in case.

One of those is to keep a decent supply of food in my house.  You never know when the stores will be sold out, or when you’ll be unable to leave your house for a few weeks!

The bread aisle the day before Ike hit Houston Sept. 2008. Even the gross bread was gone!

So this whole allergy/intolerance thing is really rocking my world!  I had to throw out ALL the food preparations I had done, because the food was no longer something we could eat.

And so far, almost everything we CAN eat has a short shelf life and I have yet to figure out how to prolong it with different preservation methods, and then use it edibly later on.

I have no idea how to Be Prepared this winter.  It scares me a bit; in only 4 years of living here, we’ve been ice stormed or snowed in for weeks at a time on two different occasions.

I know many other food allergy Mama’s out there are just as nervous about how uncertain their families food supplies are…especially those that rely on expensive, hard to get formulas for their babies!  So I’m sharing my plan in hopes that it will help encourage these other Mama’s in their efforts to feed their families.

Right now we are eating a TON of beef, potatos, carrots, onion, garlic, salt, pepper, melons, Larabars, quinoa, tomatos, and we’re starting to add things back into Mr. Charm and the Geek’s diet as we see positive results.  I’m still waiting to have Mr. Charm tested for fructose malabsorption, and if he tests positive some of the foods we have for him will have to go, but this is a good starting point.

Step 1:  Try to get my hands on as many cantaloupes as I can right now and dry them for winter snacking.  Maybe dry some other foods as well; carrots can be dried and then pulverized into a powder that can be added to foods for extra nutrition.

Step 2:  Learn about how to grow as many of these foods as possible!  The summer growing season is over, but there is a winter growing season, and I can at least be prepared to start planting as soon as spring hits!

Step 3:  Learn how to store some of these foods long-term.  Maybe try to get some sort of root cellar type thing going so I can stock up when I find good deals.

Step 4:  Look for sales!  Our food co-op has owner’s weekends; I need to remember when they are and buy extras then.

Step 5:  PRAY.  Have faith that I can always have at least two weeks worth of food in my cupboards, and that any disaster we face won’t last longer than that!

Step 6:  Make sure we always have gas available for our generator this winter.

Step 7:  Double check my first aid kits.  If we’re snowed in or icebound this winter, I don’t want to have to risk our lives for a minor ailment because we were out of their compounded medicines.

Step 8:  Make sure I have an emergency kit in my car.  If I’m out and about and we wreck on the side of one of these little country roads with no cell-phone coverage, I don’t want my kiddos to freeze while we wait for help.

So, this is what I would recommend to any other food allergy Mama’s out there:  

  • Take a look at what you CAN eat, and decide how best to keep as much of that around as possible.
  • Look for sales and stock up.
  • Plan ahead for the emergencies you know are a possibility for your area.
  • Learn the skills necessary to maintain your food supply.
  • Don’t forget your first aid kit!  So many medicines are unsafe for food allergy kiddos – make sure you have enough safe meds to get you through a small crisis!
  • Don’t forget to check your car supplies.  Emergency blankets, water, snack bars that are safe, and whatever else you can think of that might keep you warm and safe while help comes.
  • Have faith and confidence that you will get through anything that comes your way intact and healthy.

I plan to turn this into a series, and I’ll keep you posted about each step I take to Be Prepared for Winter (With Food Allergies).

Be Prepared: Power Outage

What preparations do YOU make for inclement weather and the random unexpected?

God Blesses Us…

 
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…with the children we need.

I learned this lesson from a phone conversation with an old friend I hadn’t talked to in months.

She had her children young, and early on they were both diagnosed with being on the autism spectrum.

She fought valiantly for her kids, seeking therapy, changing diets, advocating at every turn.

Being about her age, I was a young, early twenties party girl that watched her move mountains for her kids and thought “Wow!  She’s amazing!  I could never, ever handle what she deals with!”

On the phone the other night, after hearing the bare bones of what Mr. Charm and Mr. Happy are dealing with, and what the Geek and I are doing to handle the situation, she commented “I could never deal with allergies like that!  You’re an amazing Mom!”

I just had to laugh.  Here we both were, fighting like mad for our kids, moving mountains and becoming advocates and activists in our own ways, BOTH saying we couldn’t handle what the other Mama was dealing with!

God Blesses us with the children we are best suited to care for.  He knows what we’re capable of.  He knows how far we can stretch and grow, and how much we can deal with.  And if there is a child with a special, extra need going to be born, He makes sure that child goes to the parents that are best equipped to give that extra special care.

The only problem comes when the parent doesn’t believe they can handle it.  It’s unfortunate that there are parents who fall into that camp.  Just think of the blessings they would have had if they’d had the faith to persist!

My friends’ kids are now no longer testing on the spectrum – AT ALL!!  In fact, they are now in advanced placement classes in high school, and busily dreaming of careers that require full college degrees.

They may never truly appreciate the way their Mom, my friend, fought, shoved, pushed, and worked to open the world up to them the way she has.  I hope they do.  I hope they know what an amazing Mama they’ve got.  If they don’t, I may have to go kick their butts!

So I take this lesson to heart: God Blesses us with the children we need, and a devoted Mama can make a permanent difference in her children’s lives.

I hope all Mama’s of children with any kind of special needs (or, frankly, ALL Mama’s) keep this in mind for those days when you think you just can’t go on another moment.

‘Cause they may be a blessing, but sometimes they can be…trying little blessings, can’t they!

Homemade Banana Bread Larabars *UPDATED*

 
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Mr. Charm is in love with Larabars.  Who can blame him?  They’re yummy,  but best of all, they’re pretty healthy and nutritious, too.  That makes Mama happy, so we indulge him in his love of all things Lara.

Have you seen the price of those things, though?  It can really add up when you’ve got a kid that will eat 3 of those a day!

So I decided to try making them myself…after all, it’s just a handful of ingredients; how hard can it be?

Well.  Pretty hard for us, though it really should not be difficult.  I mentioned in an older post that our blender died.  Our food processor died LONG before that.  I have a Star Frit manual food processor that does a fabulous job of cutting up onion, tomato and other not terribly thick things, so I never bothered to replace the electric food processor.

Without an electric food processor, these Larabars are really time consuming to make! If you have an electric food processor, though, these won’t be difficult to put together.

Anyway, here is what we did:

Get a whole bunch of bananas, peel them and slice them.

Bananas ready to be dehydrated.

Slice and Dice

Make up a bowl of water with lemon juice and drop the slices in there as you go.  This will help keep the bananas from turning colors.

Soaking in Lemon Water

Then lay them out on your dehydrator trays and start drying!  I set the temp at 105 degrees.  You can do this part in the oven if you don’t have a dehydrator, but I don’t know what temperature you would need to use.

Ready to dry

I didn’t let these dry until they were completely banana chips, either.  I left them a little bit gummy.  Larabars have that nice soft texture to them and I didn’t want there to be a hard piece of banana to bite in to.  What can I say…I’m a texture girl!

Get some dried, pitted dates and set them in a bowl of warm water to soak for about ten minutes.

Soaking the Dates

Throw your almonds in a food processor and process until fine, but not powder.  I left mine a little chunkier than I probably should have.

Chopped almonds

At this point, you would take your dates and bananas and put them into a food processor to – essentially – pulverize, and we tried it in the manual food processor.  Not a good idea!

It turned into a solid mass of food that the blades couldn’t move through!  So, the Geek did it the hard way…turned the whole gloppy mess out onto the cutting board and used a knife to cut…and cut…and cut…AND CUT until the bananas and dates were a nice mushy paste.

Chopping the bananas

Chopping the dates and combining them with the bananas

I took pictures and told him to tell me when he was ready for the next step!  (There are benefits to nursing beyond the whole “it’s good for the baby” thing!)

Eventually, you’ll have a nice, pasty ball of mashed up fruit.

Yes, Mom’s…I know JUST what that looks like!

Then toss it in with the chopped nuts and mix them completely together.

Ready to mix it all together

We were going based off a few online recipes, but all of them called for making 2-3 bars at a time.  Mr. Charm can eat a lot more than that, and we had fresh foods that were going to go bad so we increased our amounts.  In the end, we made two batches and each batch provided 12 bars.  Since there’s so much to each batch, once the fruit and nuts are all mixed together, split the ball in half and put each half into a loaf pan.

Ready to spread

Press the mixture down into the loaf pan until it’s nice and flat and as smooth as you can get it.

Spread out in the pan

Set it in the fridge for about ten minutes.

Pull it out, and use a spatula to cut the bars.  It would probably work perfectly to get 5 bars out of each pan, but we decided to make slightly smaller bars for Mr. Charm.  He IS two, after all, and sometimes decides mid-snack that he’s done.  We’d rather not waste the food!

I placed the bars in a tupperware container with parchment paper between each layer.  The whole thing will keep in the fridge for about two weeks.  You could also individually wrap the bars so they were a grab-n-go sort of breakfast food for your family.  The way we will eat them, though, all in a big container works fine.

The end result!

NOW…having done this, would we do it again?

Probably not.

The math on it just doesn’t work out.  We used about $9.00 worth of bananas, $2.00 worth of almonds, and $6.00 worth of dates.  That’s $17.00 for 12 bars, which comes out to $1.41 per bar.

I can buy them at my local health food store for $1.89 per bar.  BUT I can get them on Amazon for $1.33 per bar!!

Not to mention the cost of running the dehydrator for long enough to dry the bananas, plus all the TIME that we spent on this – it took HOURS, y’all!

So it was a fun experiment, and they taste just as good as the original, but it isn’t worth it to make ourselves.  I’m willing to spend more money and take the time to make things that greatly increase the nutrition/health/taste of the food, but, frankly, Larabars are healthy and nutritious and taste great all on their own.  There isn’t a whole lot to improve upon.

So, we’ll be ordering cases of these from Amazon and calling it a day.

That being said, I can totally see little kids LOVING this recipe!  It’s sticky and goopy and mushy, and pressing it down into the pan would be a blast for a kid that loves to make messes!  So if you want to make these, turn it into a hands-on experience for your kiddos!  They’ll love it!

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HOMEMADE BANANA BREAD LARABAR KNOCKOFFS

– 2 cups of dried bananas
– 1 cup of dried, pitted dates
– 3/4 cup chopped almonds

If you buy your bananas already dried, skip down to step 4.  Otherwise…

  1. Peel and slice your bananas.
  2. Make a bowl of water with lemon juice and put your banana slices in the bowl.
  3. Lay the banana pieces out on a dehydrator tray and dehydrate at 105 degrees. (Or use your oven but I don’t know how to tell you to do that!)
  4. Chop the almonds in a food processor until small chunks.
  5. Soak the dates in warm water for about ten minutes.
  6. Put the dates and bananas in a food processor and process until well combined and slightly pasty.
  7. Combine the nuts and fruit until well mixed together.
  8. Split the ‘dough’ in half and put each half into a loaf pan.
  9. Press down until flattened and smooth.
  10. Set in the fridge for ten minutes.
  11. Take out of the fridge and cut into bars.  You can easily get 5 or 6 bars from each loaf pan.
  12. Either wrap each bar individually to grab-n-go, or lay them out in a tupperware container and store in the fridge.  They should last up to 2 weeks.
  13. Enjoy a yummy treat!
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Have you ever made homemade Larabars?  How did they turn out?

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UPDATE October 4

I made an error calculating the cost of these bars.  The math was sound, but…garbage in, garbage out.  I DID use $9.00 worth of bananas…but remember when I said we made two batches of these?  Ahem.  I only used half the bananas in each batch, but I added the dates and almonds up individually.  Oops.

So in the end, it was $4.50 in bananas, $2.00 in almonds and $6.00 in dates PER BATCH, which brings it to $12.50 for 12 bars, or $1.04 per bar, which is still  cheaper than on Amazon.  So, I suppose it is worth it to make the bars, anyway!  We’ll order off Amazon only when I’m feeling lazy.

Sorry about the misleading information.  I blame Mommy brain.   __________

This post has been shared with Allergy-Free Wednesdays, Real Food Wednesdays, Whole Food Wednesdays, and Frugal Days, Sustainable Ways.

I’m Feeling Much Better Now, Thanks!

 
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Sorry for the big time bummer of a post last week.  <shakes it off>  I’m feeling much better now!

In fact, I was feeling better within an hour of writing about my frustrations.

It didn’t take much; all I had to do was look at Mr. Happy’s amazing smile, watch Mr. Charm take it upon himself to entertain Mr. Happy when he was crying and I couldn’t pick him up, and see the understanding in the Geek’s eyes when I described how I was feeling.

I have a pretty awesome family, and they bring me such intense joy!

So, to remind myself – and you – that I’m not usually such a Gloomy Gus, I wanted to share some of the fantastic things I’ve been BLESSED with because  of FPIES, MPI, and food allergies.

  1. I have learned SO MUCH about our food system; where food comes from, how it is made, and that knowledge has allowed me to improve the quality of our food in ways I never would have imagined.
  2. I have learned so much about how our bodies work, and how best to care for the health of my family.
  3. I have witnessed the resilience of my children and been amazed at how incredibly, totally STRONG and ENDURING they are.
  4. I have been a part of laughter through tears, which, as any “Steel Magnolia” fan will tell you, is one of the best emotions out there!
  5. I have lived every day knowing my sweet husband was my rock.  Knowing that he supports his wife and children in every thing and in every way, and will move mountains with me for our family.  THAT is LOVE.
  6. I have become a much better cook, and I was already pretty good to start with!
  7. I have branched out and experimented with foods I never would have tried.  Example: coconut ice cream.  It’s probably BETTER than most dairy based ice creams I’ve ever had!
  8. I have found a strength within myself I didn’t know existed.  I had no idea the lengths I would go or the battles I could fight until my children needed me to.
  9. I have been taught patience and endurance.
  10. I have witnessed God’s amazing provisions.  When we saw no way out financially with Mr. Charm, somehow, our needs were provided for.  The same will happen for the situation we are in now.  I have faith in that!
  11. Most of all, my sweet boys and FPIES, MPI and food allergies are a packaged deal.  They come together.  There is NO WAY ON HEAVEN OR EARTH that I can even imagine not having my precious, adorable, perfectly wonderful little boys in my life…even with the health troubles they bring.  You take the good with the bad, they always say.  In my case, I take the bad with the STUPENDOUS!

My rant and blessing reminders over, we will now return to our regular programming!

We Were Robbed

 
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…but not the way you think.

I’m sorry; I don’t typically post twice in one day but this is something I have to get off my chest.

We live WAY out in the country.  Technically, our house isn’t even a part of the nearest town, a hamlet of only 76 people.  We are very isolated.  It’s lovely, but it can be lonely, as you might imagine.

So community get togethers in our county seat, at our church, at our lodge are incredibly important to this social butterfly in order to keep from going stir crazy.

Today I had to take the kiddos in to our county seat to deal with some boring stuff: property taxes, vehicle registration, picking up checks at WIC.  On our way out of town I saw that our local bank had set up tables, chairs and tents in a parking lot and seemed to be full of folks gathered around, eating.

This weekend, apparently, is Homecoming weekend at the High School.  So the whole town is celebrating.

Except us.  

We can’t go.

There’s FOOD there.  

And “food” is my new four-letter word.  

I’m so MAD.  ANGRY.  FRUSTRATED.  IRRITATED.  And terribly SAD for my family.  We have been robbed of one of the bedrocks of community…the sharing of a meal.  I don’t know how long it will be before we can start participating in things like this again, but I foresee many heartbreaking  moments in the future where I must tell my kids “No” after they see a festive gathering like that and ask to go.

Things like 4th of July BBQ’s, parade’s, Homecoming weekend, Christmas Festival’s, Thanksgiving, Halloween…one of the first things that comes to mind when thinking of these things is, what? FOOD.  Is it worth it to risk sending my child to the ER so we can wander around a festival of some kind?

We’ve been robbed of fully engaging in life.

What’s worse is that I had no idea this weekend was a town celebration.  We’ve cut ourselves off so completely I am entirely out of the loop.  We’ve even been avoiding church; our church is jam-packed with good, Southern, God-fearing women that think potlucks where the tables are about to collapse from delicious, dairy and egg filled food are the next best thing to Heaven.  Breaking bread is a great tradition in our faith…what are you supposed to do when the bread will break you?  So, we don’t go.

And because Mr. Happy hasn’t had his shots yet and CANNOT get his shots yet because he’s been reacting for so long and his immune system is weakened, I’m terrified to let him get into close proximity to so many varied people.

We’ve been robbed of gathering with our spiritual community.

I ran into a lady from our church today at the WIC office, and she was genuinely happy to see us all.  She asked how we were doing, and after hearing a little of our story shared with me that she’s been praying for us, and that she understood why we hadn’t been to church for a while.

Then she put me on the spot: “Is there anything I can do to help you?”

Well, yeah!  There’s a ton of things I need done!  But right then?  I couldn’t think of a single stinking one of them.

I’ve spent the better part of the last two and a half years doing pretty much everything on my own, with only my husband as a supporter.  These food issues of my kiddos are the kind of thing that really, not much can be done to help with.  She who does the cooking must ensure the food is safe; if I don’t verify every ingredient myself, we risk the ER.  It’s easy to see why I’ve slowly, without realizing, taken on every burden myself to the point that when faced with a gracious offer, I had no idea how to accept it.

So, I was honest.  I told her “I could really use some help.  But I’m so used to doing everything on my own I have no idea what I could suggest you or anyone do for me.”

She gave me a look of compassion, patted my arm, and said “If you just want to get together to talk sometime, let me know.  Do you like walking?  We’ll go walking and talking some nice day.”

I thought my heart was going to break from the kindness and empathy I was experiencing.

We’ve been robbed of the purpose of community: helping others and being helped when needed.

I paid bills last night.  Finally, all the medical bills we’ve accumulated have passed through insurance and are the finalized amount we owe.  So, I paid everything – regular monthly bills and the hospital expenses accrued since Mr. Happy was born.

I drained our savings.  We’re in the hole next month, and every month for the foreseeable future.  I actually am not sure how we’ll pay our bills next month.

We only JUST finished paying off the medical bills that were accumulated from Mr. Charm’s first year of life (last half of 2010 through the first few months of 2011) in March!  The majority of our married life has been spent digging our way out of a medically induced financial mess, all due to our kids food issues.

We’ve been robbed financially.  

People who knew me in my emotionally turbulent youth might not believe this, but I’ve grown into a woman who truly does not like to spend every waking moment angry and irritated. I try to look to the future and not get mired down in the things I can’t change.

So far, with Mr. Charm’s MPI and egg allergy (and who knows what else) and Mr. Happy’s FPIES and dairy allergy, I’ve been holding on pretty well.  I’m not wasting my time raging “Why us?  Why THEM?”  I’m not bemoaning the ways our lives have changed.  I’ve just accepted what IS and moved on to how to handle our truth.

Except for today.  Today it hit me hard.  Knowing our bank accounts are drained, knowing my children will only ever be able to enjoy a friendly food-oriented gathering when they’re school age (if then), realizing how much these medical conditions have segregated us from the community on which we should be relying…today, I’m (insert foul language – be creative)  off at just exactly WHAT ALL my kids, my husband and I have been robbed of.

FPIES, MPI, food allergies…they’re the thieves that have stolen such huge parts of our lives.  And I hate every single bloody one of them.  

A Surprising Hypothesis

 
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Keeping a toddler on an elimination diet was easier than I thought it would be, but still, it has been hard.  He’s a quick little sneak, and the few foods that I kept in our pantry that I hoped would soon be added back in but were not, yet, were a temptation too great to ignore for a 2 year old.

So, one day, I caught him on the counters, digging in to a box of raisins.  And another day he snuck a few swallows of the Geek’s coffee (decaf!).

Then, the other day at the grocery store he was screaming for a snack and we had already eaten everything I had brought with us.  So, I headed to the health food section to see if I could find a snack acceptable for Mr. Charm.

Larabars!  He loves those!  And they’re pretty darn healthy.  So I got him a few.

And right after he ate the first one my brain snapped into gear and I realized – uh-oh!  Almonds, dates and bananas are not YET back in his diet!

Well, too late then!

So Mr. Charm has had a bit of a food explosion here, lately.

After the Larabar incident, I bought and dried a bunch of bananas.  He ate an entire pint jar of banana chips in TWO DAYS.

That’s probably 8 bananas, y’all!  Think he was craving a little something different?

So all this ‘new’ food in his diet got me really thinking and investigating.

The 5 perfect elimination diet weeks for him brought about only very minor changes.

His behavior was pretty much the same.  Fewer tantrums, but he didn’t have a lot of those, anyway.  He was a bit more cooperative, but not much.  (He is TWO, after all!)

His poop firmed up a bit, but not as much as we’d hoped for.  We were starting to wonder if he needed a fiber supplement.

In the last week, though, since bananas, dates and almonds were added back in to his diet, he’s had sleep disturbances, fought every nap HARD, been a little more belligerent than normal, and thrown a few more tantrums than we were used to.

So after consulting Dr. Google, I learned that there is a wide range of ‘normal’ for poop, and his loose stools seem to fit in that range.  But with the undigested food in his poop, and his other behavioral symptoms, one thing kept popping up in my searches: fructose intolerance.

He doesn’t have every symptom, but he has several of them (flatulence, loose stool, sudden slowed growth pattern when solid foods were introduced, under-eye circles, undigested food in stools, slightly poochy tummy).  This has me wondering…could he have a mild case of fructose malabsorption?

If so, it could explain why the elimination diet didn’t make much of a difference for him, and why he seemed to be a little worse after the Larabars.  Onions and garlic are two sources of fructose, and we – literally – put those on everything we cook.  (They’re delicious!)  And dates are another source of fructose, which could have been just enough too much for him.

So, there is a simple test to determine if you have fructose malabsorption, and I’m now determined to have myself and Mr. Charm tested, just to see.

If he IS mildly fructose intolerant, I will be doing a happy dance of joy joy joy!  Finally the mystery of Mr. Charm would be solved!

He absolutely has MPI, and possibly MSPI.  (That’s Milk Protein Intolerance, and Milk/Soy Protein Intolerance.)  But eliminating those things from my, and later, his diet didn’t seem to solve everything.  Except, the little problems he continued to have were random, weird, mild, and could easily be explained away by normal growth patterns.

My Mama Gut kept telling me there was something more, but I didn’t know where to look. So maybe this elimination diet WILL help solve his mystery…even if not in quite the way I expected!

Fingers crossed!  I’ll let you know what I learn.

Does anyone else have a fructose intolerance?  How did you figure it out?