Why You Don’t Let an FPIES Kid Eat Kitty Litter

They're cuddly.  They're cute.  They're purry and sweet.  But there's a dark side to the kitties...

They’re cuddly. They’re cute. They’re purry and sweet. But there’s a dark side to the kitties…

Scene:  Mr. Charm is down for his afternoon nap.  Mr. Happy is crawling around in the kitchen and dining room while I clean up the kitchen.  I’m talking to my Mom on the phone.

(It’s important to know that during construction last summer, we put the kitty litter boxes under the breakfast bar, next to the hallway.  Not the best place, but we had no where else.  Thanks to being super-duper swamped the last 6 months, we have not moved them to a more suitable place yet.)

Me:  (interrupting my Mom) “No!  Stay out of the kitty litter!”

Mom: “What?”

Me:  “Oh, Mr. Happy was trying to get into the kitty litter.  <to Mr. Happy, as he reached in the box and grabbed a handful> I said NO, young man!”

I picked him up and started digging kitty litter out of his hands.

Mom:  (laughs) “Well, that’s babies for you!  He’s going to be just like his big brother and get into everything!”

Me: (I’ve put Mr. Happy down in the kitchen so I can sweep up around the litter boxes – again) “Yeah, but why do they always have to go for the kitty litter?”

Mom: “I guess it reminds them of a big sandbox…” (as she’s talking, Mr. Happy is determinedly crawling back to the litter boxes while I sweep)

Me:  “I guess…we have GOT to get the cat door installed in the laundry room door so we can move these litter boxes out of here.  But I don’t have a saw to do it – do you think just drilling a line of holes will work?”

Mom: “Well, that could work, or you could wait until your Dad and I are up there and we can help you.”  (While she’s talking, I can see Mr. Happy almost at the litter boxes.  I start towards him, and before she finishes her sentence he sweeps his little hand in, grabs some litter, and shoves it in his mouth.)

Me:  “Mr. Happy, I.  SAID.  NO!!”  (Busily swiping litter out of his mouth as fast as I can)  “I don’t know what’s IN kitty litter!”

Mom:  (EXPLODES with laughter)  “Oh, God!  Don’t you remember the ‘good ol’ days’ when you didn’t want your kids to eat kitty litter just because – ew!  Now you have to worry about what’s IN the litter!”

Me: (not seeing the humor in this)  “Exactly.  Plus, I’m sure the cat food has corn and soy and who knows what else in it, and THAT will be in their poop, too.”

Mom: (laughing, relays the encounter to my Dad in the background)

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While she’s talking, I suddenly realize – I could care LESS about the “ew” factor of my son eating cat poop.  I’m ONLY worried about the ‘mystery’ ingredients in the litter, and the trace ingredients in the actual cat poop.  

If it were safe, I’d shrug my shoulders, roll my eyes, and dutifully feed the child a steaming hot plate of cat poo coated in kitty litter – as long as it was a safe food for him to eat!

Suddenly, I was laughing.  And feeling a bit heartbroken.

Because THAT is why you don’t let an FPIES kiddo eat kitty litter: not because it’s gross, and unsanitary, but because you don’t know what is “in” it.  

FPIES really, really skewers your world-view as a Mama.  Just sayin’.  

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Do you have a similar story?  Please share it!

FPIES and Fructose Foil the Flight Attendant

 

Mr. Happy on his First Airplane Ride

Mr. Happy on his First Airplane Ride

One of the biggest perks of my job is the free travel.  With my seniority, my family and I can literally decide on a whim to hop on a plane to Paris and be there the next morning – for free.

Sweet, right?

(Well, it is based on availability, but still…)

When the Geek and I married, we dreamed about the fabulous traveling we would do together.  Australia, China, Japan, Italy, Germany, Costa Rica, Russia…you name it, we probably wanted to go!

Just this week the Geek mentioned some of the places he’d like to travel for the photographic opportunities (did I mention that in addition to being an ace computer geek he’s also a pretty darn good photographer?) and we had a fun few moments imagining the great traveling we want to share with our kids.

We never got the chance to travel as a couple before we started the baby-making factory, but we fully planned to take advantage of my free travel benefits shortly after the birth of our second child.

Then Mr. Happy went to the hospital, and we discovered the extent of Mr. Charm’s issues.

Now, the thought of traveling is just…exhausting.  Our recent trip to Atlanta just solidified any back-of-the-mind concerns we had: traveling with our food issues is a challenge this road warrior is barely able to meet.

My in-laws went above and beyond to make things easier for us; they put us in their mother-in-law suite downstairs, complete with our own bathroom (limiting soap contamination) and kitchen (making food prep and cleanup much simpler).  They provided us with any cooking utensils we could need, access to laundry facilities, our own refrigerator and freezer, and even our own vacuum cleaner.

Even with all of that, though, the trip was stressful and exhausting for me.  With our food issues, food doesn’t just happen – it takes lots of prep work and time to cook.  Without my frequently used kitchen gadgets available, that prep work took longer than usual.  Not to mention, cooking 6 meals per day (with cleanup in between each meal) is time consuming even if you were able to just microwave most of it.

Add in diaper changes, stool/urine collection, nursing Mr. Happy, and, well, basically that was my whole day!

In the end, I got to spend very little time with my in-laws.  I was trapped in the kitchen, unable to leave for more than short breaks at a time.  It stunk.  I had hoped to spend more time with them; hoped to go and do more things with the grandparents and the boys.

It’s hard to go and do things when you have to pack a full days worth of food with you to go anywhere.  It’s hard to spend time upstairs when you are needed downstairs to cook.

I think I actually offended them by spending so much of my time downstairs.  Hopefully, they understand and weren’t offended, but still…it’s not my ‘norm’ to be a guest in someone’s home and only see them for 30 minutes a day!

All of this just brought up the fact that until we can simply pop in to a restaurant – any restaurant, anywhere – for a meal, our traveling days are severely restricted, if not eliminated.  

After all, flying for free is great, but…what are we going to eat once we get there?

Sure, I could make sure we rent a place with a kitchen, but, frankly, if I’m going to have to spend hours of my day cooking I’d rather do it in my OWN kitchen, with my OWN pots, pans, gadgets and helpful tools.

That’s not even considering the challenge of making sure we can find “safe” food for us to eat once we are there!  Have you seen the price of grass-fed beef in the stores?  Have you even SEEN grass-fed beef in the stores?  How about quinoa flour?  Or the special rice crackers that are the only crackers I can find for Mr. Charm to snack on?  How about the ONLY potato chips I can eat on this diet, that I’ve only found in one health-food store?

We’d have to ship most of our food out beforehand, and find health-food stores to shop at to supplement once we arrive.

Is it really worth all that just to experience a “vacation”, especially while the boys are as young as they are and not likely to remember any of it?

So, FPIES and fructose have officially won the travel war with the Flight Attendant.

I’d really rather just stay home.

Any other FAM out there that take “staycations” instead of vacations?  

Fructose Friendly Fresh Salsa

Ready...set...SALSA!

Ready…set…SALSA!

Can you guess what I’m making?

Homemade Salsa, of course!

Ever since receiving the Mayo Clinic Fructose Malabsorption diet, I’ve been expanding Mr. Charm’s diet.  Tomato sauces are out, but fresh tomatos are back IN.  Woot!

That got me thinking about snack foods: Mr. Charm LOVES chips with salsa (takes after his parents!).  But jarred salsa from the grocery store is just full of junk…could I possibly make a salsa that would be fructose friendly?

Every recipe I found called for garlic and onion, and after our short experimentation with food journals we’ve already learned that garlic is ‘iffy’ for Mr. Charm.  It doesn’t wig him out completely, but it does affect his poo…so probably not a good idea to add too much more  fructose into his diet if we’re giving him garlic.

Onion is on the “maybe” list for Mayo, too, so I figured if the salsa could ‘live’ without garlic and onion, I could try OTHER fructose foods on Mr. Charm without complicating things by the garlic and onion.

Like Coconut.

I’m SO  ready to trial coconut on him…talk about making my life in the kitchen easier (if he passes)!!

So…back to the salsa.

Get out two pans and fill them with water.  Plop one on the stove and set it to boil. Put a whole bunch of ice in the other pan.  Set it aside.

I thought I'd try using my steamer insert for easier tomato removal.  It didn't really make it easier - just use a slotted spoon!

I thought I’d try using my steamer insert for easier tomato removal. It didn’t really make it easier – just use a slotted spoon!

Ice water bath...

Ice water bath…

While your water is heating up, grab 4 fresh tomatos and slice an X in the bottom of the skins.  We used Romas, but whatever you’ve got will work.

X in the bottom of a tomato.  Mr. Charm really wanted to help, so he's my 'hand model'!

X in the bottom of a tomato. Mr. Charm really wanted to help, so he’s my ‘hand model’!

Take a jalapeno pepper and de-seed and de-vein it.  You don’t need to chop it up at this point.

I forgot to wear gloves.  Then I chewed on a loose cuticle.  Ouch!  Remember to wear gloves on this step...

I forgot to wear gloves. Then I chewed on a loose cuticle. Ouch! Remember to wear gloves on this step…

Squeeze the juice from half of one lime.  Or use the pre-packaged stuff, if that’s safe for you!  About 1 TBS is what you’re shooting for.

Grab some cilantro and pull off a bunch of leaves.  (Don’t you love how specific I am?)  Really, just pull off as many as you think you’ll want in your salsa…I probably had 2-3 TBS.

Once the water has boiled, drop your tomatos in the water.  Well, place  them in the water – we don’t want you to get burned!

Tomatos almost ready to get naked!

Tomatos almost ready to get naked!

Give them about 1-2 minutes, then remove them from the boiling water and drop them into the ice water bath.  Let them cool.

When you pick them up from the ice water bath, the skin just slips right off!  So easy!

Naked Tomatos

Naked Tomatos

Then just cut off the stem part, cut the tomatos in half and de-seed them.  I tried to squeeze out as much liquid as I could; I don’t like a really runny salsa.

Now, the fun part: put it all in your food processor.  Sprinkle on some salt and pepper (this is ‘to taste’).  Let ‘er rip!  I used my Starfrit Manual food processor, but any kind would do.

All ready to go!

All ready to go!

And what you end up with is delicious, homemade, fructose friendly, yummy good Salsa!  Of course, if fructose isn’t a problem for you, you could add in some onion and garlic to your salsa.  This is a pretty forgiving recipe, after all…just mix stuff together until it looks and tastes right to you!

My finished Salsa!!

My finished Salsa!!

The Geek said it tasted great – just as good as regular salsa with onion and garlic.

Mr. Charm was thrilled to have salsa again.

Mama was happy.

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FRUCTOSE FRIENDLY FRESH SALSA

– 4 tomatos (we used Roma)
– 1 lime
– 1 jalapeno
– cilantro
– salt
– pepper

  1. Boil water in one pan, make an ice water bath with another.
  2. Cut the jalapeno in half, cut off the stem, and de-seed it.
  3. Cut the lime in half and juice half the lime.  About 1 TBS of juice is good.
  4. Tear off about 2-3 TBS of cilantro leaves.
  5. Put the tomatos in the boiling water for 1-2 minutes; remove from water and place immediately in the ice water bath.
  6. Let tomatos cool, then remove the skins.
  7. Cut the stem off the tomatos, de-seed and squeeze out excess liquid.
  8. Put all ingredients in your food processor, add salt and pepper to taste, and process!
  9. Enjoy your delicious, better than store-bought, Salsa!

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Have you made your own salsa?  Any additions you like to your salsa?

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This post was shared with Allergy Free Wednesdays, Whole Foods Wednesdays, and Real Food Wednesdays.

First Day of Speech Therapy

OK, now what?

OK, now what?

Last Wednesday was Mr. Charm’s first day of speech therapy.

Even before he went, he had a word explosion!  He learned 8 new words the week before his first session, and started mimicking, which he had always refused to do before.

At his ‘orientation’ session, his therapist said lots of kids came with backpacks for “school” with snacks, toys, or whatever in them; she suggested that would be a great place for his “Allergy Kit” – a bag I made up with his Epi-pen, dipenhydramine, and medicine syringe.

So that morning, as I packed his Thomas the Train lunchbox with safe snacks, and stuck his Allergy Kit in the front pocket, Mr. Charm gathered a few toys and snuck them in the top of his Thomas backpack.

Can you guess what he packed?

Thomas Trains, of course!  (Seriously, the child is obsessed!)

So, Big Boy Backpack in tow, we headed in to the therapist session.

While he was in session, I ran a quick errand, which was a joy to do without two kids to herd!  When I returned, I got a nice progress report: he had managed to name about 38% of her ‘random objects’ box, and by the end of the session was warming up to her and using more words to make requests for play.  All in all, she was pleased with his progress on his first visit and encouraged that he would do well in the therapy.  

Then, this weekend came.  It was like a word bomb blew up in our house!  He taught himself to say “pillow”, “towel”, his brother’s name, and – my personal favorite – “All aboard!”  He even started trying to mimic us saying the ABC’s, a request he has always refused!  (The “all aboard” thing is too cute, by the way.  When he’s running his trains around the track, he’ll say “OK, all aboard!  Bye Bye!” repeatedly.  Stinking adorable!)

The whole family is saying “Wow, speech therapy is really doing him some good!”, to which I have to say “After one session?”  No, I think he was poised to hit his verbal growth spurt at this point in time already…but I think the speech therapy will capitalize on his new interest and really give him a great boost in his verbal skills.

The Geek said that if we had waited until now to schedule the evaluation, he would question whether it was necessary – THAT is how great Mr. Charm’s verbal abilities have grown in the last two weeks!

Still, I’m excited by the therapy for him; he really had fun playing last week, and it’s good for him to interact with other people.  Not to mention – I can run at least one quick errand each time with JUST Mr. Happy!

Mama doesn’t ever get breaks, you know.  This is a good thing.

So I’m looking forward to our session today, so I can show off HIS new words to his therapist.

And I know he’s looking forward to it, too.  Miss C, his therapist, promised to hold his next session in…The Train Room.  

Did your kids have a sudden word explosion?  Or did their verbal abilities develop slowly but steadily?

FPIES Children With NO Safe Foods: Nutricia Responds!

Earlier this week I wrote about FPIES Children With NO Safe Foods, asking for your help in spreading the story to help these children.

Y’all were awesome!  I hear there was a boost in Facebook “Likes” on Michael’s page, and I know several of you shared his link.  Thank you!  (And if you somehow missed it, please go and share HIS link now!)

In case this wasn’t clear from my first post, I do not know Michael, Lidija, or their parents.  I have never met them, spoken to them, or interacted with them at all – other than a “thank you” comment I received from Michael’s Mom, Jennifer, after  sharing her sons story.

I am simply a Mama dealing with the same medical condition in my own son, and can acutely feel the pain of what these families are going through.  

So other than being a Mama with a son that suffers the same illness, I have no personal interest in this situation at all.

That being said, I’ve now become a small part of the story: Nutricia responded to my post. Here is the response:

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“Hi, I’m Sarah and I work at Nutricia. We saw this post and wanted to provide you and your readers with an update.

When you have a child with severe food sensitivities, we understand all you want to do is help them thrive. We want that too. We have been in touch with the families about partnering with them and their physician to help find an alternative nutritional solution.

I also wanted to share our resource page that details our full evaluation of this situation (www.neocate.com/about-neocate/neocate-junior-update). It’s important to note that we did not make any changes to the Neocate Junior Unflavored product, formula or ingredients in 2012.

We urge any families with questions or those experiencing any difficulties with any of our products to please contact our dedicated team of nutrition specialists at 1-800-365-7354.”

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If you click on the link she provides, it outlines Nutricia’s response to the problem that has befallen 15 families (so far).  I’ve heard that what she says is the truth: they ARE talking with the families to try and come up with a solution.

I also received a comment from someone calling themselves “me myself and I” who apparently personally knows two of the families in this predicament.  Here is what this person says:

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Even if Nutrica didnt change anything…someone along the way had to have!
There are not just these two children, there are many, and the supplies are dwindling
Its not a matter of thriving but LIVING.
There are two sides to every story and I know two of these families and help did not come quickly.
I also know for a fact that they did not feel anything was being done until numerous people and the media got involved.
Something in that formula changed whether Nutrica or someone further down the line changed something….there is a change.
We are in the process of talking to labs to get them to test a can of the old which these children had no problem with and a can of the “new label” to get to the bottom of this; so far three labs are interested.
The truth will come out.

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I have my own theories about this situation, but I’m asking you: What do you think is the truth behind the mysterious, sudden reactions these children are having to a previously safe food?

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In the meantime, please continue to share the links to Michael and Lidija’s pages…I’d hate the thought that someone who could help them was taking a “Facebook Vacation” and didn’t see your share!  

And if you know of any other Families in this situation, please send me their web pages so I can add them for further sharing!  

Thank you!

Read their stories:

Save Little Michael
Lidija’s Journey

Donate/contact here:

Michael Gonzalez
Lidija’s Hope

The Great Candy Experiment

Aw...

Aw…

They say that Valentine’s Day is about Love.  

<snort> 

I disagree.  Valentine’s Day is about CHOCOLATE!

Until I married the Geek, I rarely had a “beau” on Valentine’s Day.  Just my luck, I always either met a guy right after  the Big V, or my relationship ended right before  the 14th.

Being a single adult on Valentine’s Day is downright irritating.  (I treated myself to lots of chocolates, with an occasional pawn shop jewelry trinket thrown in when funds allowed.)

Being a KID on Valentine’s Day is AWESOME.  (All the Valentine’s cards!  The lollipops and candies and chocolates and cupcakes and…really, only Halloween is better for the ‘score’ factor!)

UNLESS you are a kid with food allergies.  Then, Valentine’s Day is just another day, only worse, because everyone else is wide-eyed with treat-inspired excitement and you can only sit and watch.  You can’t even dress up like Thomas the Tank Engine!  (Well, you could, but that would be weird.)

That’s pretty lousy.  Frankly, I’m getting tired of watching Mr. Charm live through holidays with minimal participation.  One thing I looked forward to in parenting was the joy of really doing the holidays up “big”.  So far, I’ve had to purposefully downplay them all so Mr. Charm won’t get the sense of being left out.

(The other day in the candy section near a check-out stand, Mr. Charm got down on his knees to examine a bag of candies.  Suddenly he called out “Calk!” in an excited voice – Mr. Charm’s version of the word “chalk”.  The child thought a certain bag of candy was sidewalk chalk, because he’s never had candy before in his life.  That’s good, but that’s just sad.)

Well, I set out this Valentine’s Day to provide something  he could indulge in as a treat.

I want my son to have a candy.

I was inspired, initially, by a friend who mentioned that she’s experimenting with maple syrup and cocoa powder to make her own ‘safe’ chocolate chips for her son.

So, I started Googling.  Maple syrup is “safe” on Mr. Charm’s diet…surely there was SOME maple syrup/chocolate candy recipe out there!

If there is, I couldn’t find it.  I found a great tutorial on how to make plain maple syrup candy, and those look and sound delicious!

But I wanted a CHOCOLATE for my boy.  He loves chocolate, but the Enjoy Life chocolate we started using when we had to go dairy-free two and a half years ago have evaporated cane juice in them, which we have figured out makes Mr. Charm nutso.  Plus, they may or may not be safe for Mr. Happy when he can start having treats, so, finding a safe chocolate would be fabulous!

In my searching, I DID find a recipe for a homemade chocolate syrup, which I promptly made.  Mr. Charm has never had a drizzle of chocolate on anything in his life!  No chocolate milk, no ice cream with a drizzle of chocolate syrup on it, no strawberries dipped in chocolate.

Sad.

I followed the recipe to the letter, and it came out DIVINE!  The Geek said it tasted just as good – if not better – than Hershey’s Syrup…I think it’s better because it’s not full of junk!

I’m not going to put the recipe in here, because I didn’t tweak a single thing about it – just click on over to Deliciously Organic and make it for yourself!  I will, however, show you how gorgeous it turned out:

Delicious, homemade, pure, real ingredient Chocolate Syrup!!!

Delicious, homemade, pure, real ingredient Chocolate Syrup!!!

So, back to the Great Candy Making Experiment.  

I won’t keep you in suspense…it failed.  Miserably.

It’s been so long since I had this many kitchen fails, I’m really quite disheartened!  (Along the path of this candy search, I found two pudding recipes that needed lots of tweaking but sounded like they had potential…one tasted great, but was far too runny, the other was far too thick and bland.  Ugh.)  Though, in all fairness, I’m a total neophyte when it comes to candy making, so I really was doing this all on a wing and a prayer!

The first batch of candy that I made, I decided to essentially just add cocoa powder to the maple syrup in this recipe.  The only question I had was: when to add the powder?

She says to boil the syrup until it reaches 110 degrees C, then take it off the heat and DON’T STIR while it cools to 80 degrees C.  (Celsius was easier to read on my candy thermometer!)  Then, at 80, you’re supposed to stir like crazy as the candy quickly thickens and starts to harden, then pour it fast into molds or onto a parchment lined cookie sheet.

So, do I add the powder at 80, and hope I can incorporate it before the candy starts to harden?  Or do I add it at the beginning?

I decided to add it at the beginning.

I’ve made a similar recipe once before, my delicious Honey Lollipops, so I could tell this was cooking up nicely…until it reached 105 degrees C.  Then, it just…stopped.  It would not get any hotter and I started to smell “scorching” smells.

So, I wound up with a very thick, goopy pan of, basically, a fudge sauce.

Not. What. I. Wanted.

So, for round two, I decided that maybe I should try using my brand new Chocolate Syrup instead of cocoa powder, and add it at 80 degrees, right before you’re supposed to stir like mad.  Then, the chocolate would probably be easier to incorporate, and if it didn’t incorporate completely, it might make a nifty swirl effect.

Without the cocoa powder in the syrup, I was easily able to reach 110 degrees C.  I let it cool to 80, dumped in the 1/4 cup of syrup, and stirred away.

Yet another pan of less thick, but still goopy fudge sauce.

STILL Not. What. I. Wanted.

So I did what I should have done in the beginning and went to my computer to look this up online.  Using an iPhone to search for recipes gets challenging; using the bigger screen and mouse setup made it easier…and finally, on the SECOND page of my Google search for “make your own sugar free chocolate” I found the answer to where I have gone so miserably wrong: Fat.

In all the recipes I searched out, they all had some variation on cocoa powder, vanilla, some kind of sweetener, some even called for chopped up baker’s chocolate…AND they all called for some kind of Fat.

Some used shortening.  Some used butter.  But some said the REAL secret to EXCELLENT homemade chocolate is Cacoa Butter.

Humph.

I don’t have any Cacoa Butter.

So Mr. Charm won’t get any chocolates for Valentine’s Day.

He will, however, get a big ol’ glass of chocolate milk, some strawberries dipped in chocolate sauce, and maybe a big bowl of Banana Ice Cream with Chocolate Sauce drizzled on top!

That’ll have to do…until Easter.

Mama’s on a mission, y’all.

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Happy Valentine’s Day, everyone!  I hope you have delicious goodies to nosh on, and lovely people to share the goodies with!

Has anyone successfully made a vegan, sugar/fructose-free chocolate bar/chip?  If so, I’m begging you to share the recipe!!!

What Is An FPIES Kids First Food?

My son's first kitchen appliance!

My son’s first kitchen appliance!

ICE.  Of course!

We aren’t quite ready to start Mr. Happy on solid foods yet, but there is concern in the FPIES world that if you have to wait too long to begin feeding your child, feeding issues raise their ugly little heads.

There are physical problems that come up: texture issues, oral aversions, etc.  There are psychological problems that can come up: a mindset of “I’ve never eaten, so I won’t now”, or an actual dislike of food for some reason.  So, on the recommendation of the fellow FPIES Mamas – and our new dietician – we got a SnoCone maker for Mr. Happy.

So now he eats crushed ice, sitting in his high chair, at mealtime.  

It is supposed to make mealtime “normal”, make him feel like he’s eating with the family,  and help him work through the physical act of using his mouth for something other than latching on.

I honestly don’t think we’re going to have many problems with feeding him; he’s been trying to grab food from me for months now, and the only difficulty in feeding him the shaved ice is that it is quite cold!  He gets a small mouthfull and looks at me like “Holy smokes, Mama!”

It’s kind of cute, actually.

But, he opens his mouth for the spoon, and the only trouble he has so far is that he tends to close his mouth a little bit too soon…so most of the ice falls down onto his front!

I think that the addition of some ‘flavor’ and ‘taste’ into his food will solve that problem!

So, while most babies get a big ol’ bowl of oatmeal or rice cereal, or maybe some sweet potatos or applesauce as their First Food, Mr. Happy gets to eat unflavored shaved ice.  

FPIES stinks.  

What was your child’s First Food?

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In other news, I wrote a brief version of our story for the FPIES Foundation’s “Inspiring Family Stories” page.  I’d love it if you’d take a look and share the link!

Read “Mr. Happy’s Story”, and while you’re at it, check out their Get Involved page to see what you can do to help support FPIES children!  There are ongoing fundraisers that you might peek at – if you need any online shopping done at their partners websites, you can help FPIES and take care of your purchases at once!

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This post has been shared with Allergy Free Wednesdays.

FPIES Children With NO Safe Foods

Take a trip into your imagination for a minute…

You are the mother (or father) of a precious little boy.

He’s adorable!  The light of your life.  You can’t believe how lucky you are to be his parent.  You snuggle with him, lovingly bathe him, tickle him and cover him with kisses.

Except, your precious little boy is very sick.  VERY sick.  Every time you feed him, he throws up, goes lifeless, gets diarrhea, has seizures, and often winds up in the hospital with shock and dehydration.

It doesn’t matter what food you give him, he reacts that way every. single. time.

You can do nothing.  Nothing but hold him while he vomits, brush the hair back from his face, rock him while he cries.

You are helpless, watching your son suffer through agonizing pain…from food.

Eventually, you learn that there is a medical food he can tolerate; a formula called Neocate Junior Unflavored.  It provides him with all the nutrients he needs to grow, so you don’t care that he’s two years old and still drinking from a bottle.  He can ‘eat’!  As a parent, you are so relieved you cry.

Now, with his safe formula in hand, you can slowly attempt to learn how best to heal his body…how to discover real foods that he can tolerate, without the pressure of watching him wither away in pain.

Do you feel the relief?  That gigantic boulder of weight lifting off your shoulders?

Your family goes along, happy with the formula, slowly learning more about his disease, when, one day, you get an email from the makers of Neocate.  They’re changing their packaging, they tell you.  But don’t worry, the formula itself will not change.

“That’s good,” you think, and then put it in the back of your mind.

Eventually the day comes when your newest shipment of this expensive medical formula arrives with the new label.  You put it in your kitchen cabinet, right next to the ‘old’ formula, and think nothing of it.

Until a couple days later, when you make up the days batch of bottles for your son.  You reach in the cabinet and grab the most convenient can of formula.  On this day, it is from the ‘new’ label batch.

And your son doesn’t want to eat it.  He insists it tastes “icky”.

You tell him it’s the same thing he’s always had, so drink it.  Maybe you even get a little impatient with him.

Shortly thereafter, he begins vomiting.

You wrack your brain, trying to think of what he could have consumed; the child ONLY eats the formula, after all…did he somehow get a crumb from something else?  Sneak a food when you weren’t looking?

This goes on all day.  The only thing you can think is that it ‘might’ be the formula.

So the next day, you make his bottles with the ‘old’ formula.

He drinks it right up!  No vomiting, no pain, no “icky” complaints.  So you feed him from the ‘old’ formula the next day, too.  Again, no problems.

The third day, you give him the ‘new’ formula again, just to see. 

Vomit.  Pain. “Icky”.  

So you call Neocate.  They assure you that the formula is identical; you and your spouse sat down and cross-checked the ingredients from an ‘old’ can with a ‘new’ can, and the ingredients list IS the same.  Still, you KNOW something changed because that is the only reason your son would become ill – he was exposed to an unsafe ingredient for him, and the Neocate is the only thing he consumes.

Neocate insists it did nothing different – even the glue on the label is the same!

But you know better.

After a second batch of the ‘new’ formula is sent as a replacement of the first batch (because they were willing to exchange one lot number for another), you try to feed it to your son.

“Icky”.  Vomit.  Pain.

So you call the FDA.  They tell you that you are NOT the first family to call and report this to them…an investigation will be done.

But an investigation takes time, and you just don’t have time.  You have a growing child that needs to eat something!

So you scramble, getting on eBay, Craigslist, Facebook, calling anyone and everyone you know, trying to buy up as many cans of the ‘old’ formula as possible.

Your family is going broke; the financial strain of trying to buy up many months supply of this formula is making things really hard for you.  You are worried you may not be able to make the mortgage payment.

But you do it anyway.  You are a parent, and you love your child.  You would do anything for him…even get evicted.

Eventually, the FDA says they can’t find anything; they’ve torn the factory apart, searched high and low, and the formula is the same.

Except it is not.  It smells different, clumps differently, has a different color to it compared to the old formula.  You ask the FDA if they’ve tested for rice, as the way your son is reacting is exactly the way he reacts to rice.

They checked it for rice DNA.  It came back negative.

But…you don’t need to be a biologist to know that DNA and proteins are different things – and your son reacts to rice proteins.

Neither the company nor the FDA will test the formula for rice proteins.

So what do you do now?  You have enough formula to last until October of 2013.  After that, your sweet, precious, beautiful boy may – quite literally – starve to death.  

You can always feed him the formula that is making him violently ill, but, c’mon, you can’t really do that.

Every other food – medical formula or “real” food – you’ve ever given him caused him to react the same way.

You have nothing to feed your son.

The reality hits you: you may have to watch your child die a long, slow, painful death…from starvation…in one of the fattest, wealthiest countries in the world…because a manufacturer changed something  about their formula (however small a change) and will not correct the change.

In your quest for formula, you’ve learned that you are not alone.  There are other families out there in the same exact position as you.

None of you want your children to die.  

 

What do you do now?

 

__________

OK, come back to reality.

Your  reality is not so bleak.  Your  reality does not involve the impending death of your child.

But I didn’t just make this story up: this IS the reality for several families in America right now.  

They need help.  Desperately!

So I’m asking you today…go read their blogs, go “like” them on Facebook, email/text/FB/tweet – positively saturate  social media with their contacts and stories.  

Let’s spread this word far and wide: Michael, Lidija, and other children NEED your help to stay alive!

– You never know who YOU know that might have access to the formula they so desperately need.

– You never know who YOU know that might be able to get the right word into the right ear to bring about a return to the original formula recipe.

– You never know who YOU know that might be able to help this family in some way.

– You don’t even really know what YOU can do to help…until you read their stories.

If you have any formula that fits the requirements for these families, please, please  send it to them as a gift.

If you don’t, please pray for them, share their stories as much and as often and in as many ways as you can, and, if you can afford to, send them a donation to help pay for the formula and testing they still have to pay for.

No parent should have to be in their position.

No parent should have to worry that their child will starve to death.  

__________

Read their stories:

Save Little Michael
Lidija’s Journey

Donate/contact here:

Michael Gonzalez
Lidija’s Hope

__________

These children both have FPIES, the same disease Mr. Happy suffers with.  At this point, Mr. Happy’s situation is not nearly as treacherous as Micheal and Lidija, but I feel the gut-wrenching agony of their parents nonetheless.

For Michael, Lidija, Mr. Happy, and all children with FPIES, I ask for your help.

Thank you!

__________

This post has been shared with Allergy-Free Wednesdays.

Teeny-Tiny

The Geek might start thinking I’m the most vain person on the planet soon, because I keep looking at myself in the mirror and making random exclamations about how GOOD I look now.

It’s not vanity.  Really.

It’s shock.

I’m still having a hard time wrapping my head around the drastic weight loss (63 pounds!), and the body that had been hiding underneath all that bulk for so long.

A couple weeks ago, the kiddos and I were heading in to a store; Mr. Happy was in his Ergo carrier, and for some “I’m two and therefore impulsive” reason, Mr. Charm didn’t want to walk – he wanted me to carry him.

So there I was, a baby strapped to my chest, a toddler on my hip, my “Mom Bag” purse/diaper bag combo over the other shoulder, marching my way across the parking lot, when it dawned on me…Mr. Charm weighs about 27 pounds.  Mr. Happy weighs just under 20 pounds.  My purse probably weighs in between 3-5 pounds (I know, it’s absurd, but whenever I take things out, the next day I need whatever I removed).

Add it together, and you’ve got 50-52 pounds of weight I was hauling.

That’s STILL 11-13 pounds less than I used to carry around ON MY BONES, ALL THE TIME.

It’s a wonder my knees haven’t already given out! (But it does explain the surprising amount of muscle I actually have.)

In Atlanta, I went shopping at Goodwill (thrift stores have been a lifesaver, as I’ve dropped weight so quickly).  My Mom kept Mr. Charm with her, so it was just me and Mr. Happy on my mission: khaki pants and jeans.

I absolutely scored: two dresses I wasn’t even looking for (that I can nurse in while wearing), two khaki pants (one corduroy – tell me, why did I hate corduroy as a kid? That stuff is awesome!), and two pairs of jeans.  PLUS, a London Fog raincoat in excellent condition!

And it was all size FOUR.  

Before this elimination diet started, I was a size 16/18.  

As I was checking out, the lady behind me struck up a conversation about Mr. Happy, and how ‘big’ he is.  I laughingly told her that he was actually my small baby at birth – a full two pounds and some change smaller than his older brother.  When she heard their birth weights, her eyes got big and she exclaimed “And look at you!  You’re so little!”

Little.  

Someone described me as “little”.

I’ve been a “Big Girl” for so long, being called “Little” felt…weird.

At the dieticians office, we were talking about Mr. Charm’s growth curve.  He’s been on the smaller side since he was about 9-12 months old.  For me, that meant that the introduction of solid foods had done something to his growth pattern, and I was blaming the fructose.

The dietician disagreed; she said often breastfed babies will drop weight at some point.  (If she’s right, I guess I owe our pediatrician an apology.)

Then she pointed out, “And look at you two. <me and the Geek> You’re both slim.  Being small and tall is probably going to be Mr. Charm’s normal.”

Slim.  

She described me as “slim”.

I told her that until recently, I was NOT slim.  I was obese.

(Whew.  That was hard to say!  I’d lived in denial for so long, I couldn’t see the truth…and I know I would never have been able to say the truth.)

I was obese.

She looked shocked; apparently, I’ve lost weight “well” and look as though I’ve been trim and fit my whole life.

If she only knew…I told her that the Geek and I had been “Jack Sprat and his wife” when we married.  He was tall and skinny, I was short and fat.

I much prefer being short and skinny.

But I’m still shocked when I look in the mirror.  

__________

And now I’m going to do something very brave and silly for a fairly “anonymous” blog: I’m going to share pictures of myself.  Furthermore, I’m going to share a “fat” picture.  Be gentle, please!

This was taken at the top of Camelback in Phoenix in 2005.  This is the heaviest I ever was, but I was still only about ten pounds heavier than my pre-pregnancy weight (the weight I was when I got married to the Geek).

I take some comfort from the fact that, even at that weight, I managed to haul myself up the steep side of Camelback, all the way to the top!  (We didn’t know there was a steep way and  a gradual way to get to the top…we went the hard way!)

Me at my biggest.

Me at my biggest.

This was taken yesterday.

I didn't have to hike this time!

I didn’t have to hike this time!

See what I mean?  Shocked.

Has anyone else lost a huge amount of weight?  How long did it take before you weren’t shocked at your image in the mirror?

Our New Team – The Dietician

Tuesday this week we met with the dietician.  I honestly didn’t have high hopes, as – aside from one friend who is a knowledgeable dietician (and fellow FPIES Mama) – our experiences with dieticians has been lackluster.

In this case, I was pleasantly thrilled!  This lady knew about my kids issues, and how best to handle the dietary restrictions for the boys!

She matter of factly started with Mr. Happy, discussing his FPIES and how to introduce solid foods into his diet.  Our plan of introducing quinoa, then banana and broccoli was deemed a good start in her mind.  When we suggested eggs as an early food (based on the fact that we will hopefully be starting egg trials on Mr. Charm) she suggested we hold off for now, as eggs are such a highly allergenic food.  (Though, he did test negative for IgE’s to egg, so…we may proceed with eggs, anyway.)

I asked about Vitamin D deficiencies, as we haven’t been able to give Mr. Happy any vitamin D drops for most of his life, and she said that would have to be a specifically ordered blood test to determine his levels.

In the meantime, she suggested a brand of vitamin D that I know I’ve heard about from the other FPIES Mamas, as a just in case supplement.

She also recommended paying close attention to his iron levels in the current CBC’s that are being run.  If necessary, we’ll need to supplement his iron and again, recommended a ‘safe’ brand for us to try.  (Safe meaning aware of cross-contamination and relatively conscientious in practices, not that he’ll be fine on them no matter what.)

Then she gave us a sample of Neocate Nutra, an amino-acid based cereal-type food, suggesting we may want to use it for Mr. Happy.  I’m nervous about that, though, as Neocate formula is going to have to be a ‘trial’ for us at some point.  Just because it is amino-acid based doesn’t mean my son will not react to it.  Still, something to consider.

The Mama’s have often mentioned that many of them have their babies on probiotics.  They say it helps them to pass trials and keep the gut healthy.  Our dietician said that Mr. Happy is getting all kinds of good stuff from my breastmilk, so he probably doesn’t need a probiotic at this point.

I know breastfeeding is great for babies, but I also don’t want to discount the collective wisdom of the FPIES Mama’s.  So, the probiotic is still on as a possibility for us.  We may just wait and see how food trials go, first.

She strongly urged us to enter the wide world of Hemp for Mr. Happy; hemp milk, flour, well, hemp anything!  It’s up there with quinoa as a powerhouse food, and is the least allergenic of the dairy substitutes.

Coconut also came up; we were madly in love with coconut before Mr. Charm’s fructose malabsorption diagnosis, as coconut is one of the most versatile foods I’ve ever encountered!  She recommended coconut yogurt for Mr. Happy as a good food to trial, too.

Since discovering Mr. Charm (and myself) had a fructose intolerance, I’ve been concerned that Mr. Happy might have it, too.  Since the only way to know for certain is to scope him, and that’s off the table right now, I asked her if I should cross-reference the FPIES Food Survey one of the brilliant FPIES Mama’s put together (an incredibly helpful resource) with the Mayo Clinic diet we’ve put Mr. Charm on to find the ‘safest’ foods possible to start food trialing.

Her response?  No.  

Basically, dealing with FPIES is enough to deal with right now, and trying to limit an already limited diet is insanity.  Fructose malabsorption is about what quantity of fructose your body can tolerate, and the small amounts of food we would be trialing Mr. Happy on will be unlikely to cause any intolerance/malabsorption issues in him at this time.

So pass the apples and pears!

I was relieved by this suggestion at first, honestly, but after consideration I think I’m still going to at least start  the food trials with foods that are safe for both boys.  Mr. Charm can eat quite a lot of foods, and it will take 2-4 weeks for every new food we add to Mr. Happy’s diet.  That gives us a lot of time to run through foods that both kiddos can eat, and while that is happening, it will make meal preparation a lot easier on me (allowing, of course, that Mr. Happy actually passes those foods!).

That means it might be a year or more before I’m having to prepare separate meals for the boys, or maybe – hopefully – never having to do so.

But at least now I will not worry if Mr. Happy does not handle foods that are safe for Mr. Charm and we must trial foods that are UNsafe for Mr. Charm!  

All in all, for Mr. Happy she knew her stuff, had lots of good suggestions, and while most of our “game plan” hasn’t changed too much from this visit, I now feel a LOT more confident that we’re making the right dietary decisions for our sweet baby.

After running through Mr. Happy’s needs, we turned to Mr. Charm.  

Strangely enough, I felt more confident about how to handle FPIES than I did about fructose malabsorption, so I was eager to hear what she had to say.

She started by evaluating my “homework” assignment: a three-day food journal of everything Mr. Charm had eaten.  As a meticulous data person, I had added the calorie count for each thing, as well.

Much to my happiness, she said his diet looked very well-rounded to her, and that I didn’t need to ‘push’ anything in particular his direction.  Whew!  Good to know I’m feeding a balanced diet to my son, especially with the restrictions I work under!

However, she agreed that giving him a vitamin would be a good idea.  I asked her if she could recommend any, as every children’s vitamin I have found has fructose added, and sure enough, she could!  Even better, she happened to have a sample can to give us.  It’s a powdered vitamin to be added to his food, and based on his diet she recommended we give him a half a serving per day.

Unlike his brother, Mr. Charm is no longer breastfed, so she recommended putting him on a probiotic. 

My friend, the dietician, had mailed me a copy of the Mayo Clinic Fructose Malabsorption diet, and that is what we currently use to plan Mr. Charm’s menu.  Our new dietician read the Mayo Clinic diet, liked it, and said we should continue to use it as a guide.

(As an aside, another thing I liked about her was her willingness to read and learn more.  When I showed her the FPIES food survey, she found it very interesting and asked to make a copy.  She also asked to copy the Mayo Clinic Fructose diet.  I’m impressed by people who want to learn more in order to help their patients.)

The most important thing we took out of the discussion about Mr. Charm was something that we had forgotten in our struggle for an elusive baseline: he is intolerant to fructose, but an intolerance is not the same thing as an allergy (whether IgE or not).  Intolerance is about a level – how much can he tolerate?

So putting him on a completely no fructose diet is far too restrictive; his body needs to get some fructose in order to create the enzymes necessary to process fructose, otherwise, it will stop making the enzymes, and therefore make him MORE intolerant.

So she told us to start a food journal for him, trialing him on fructose foods.  Basically, keep feeding him like we are, but add ONE food that is ‘unsafe’ for him at least once per day.  Start at about half the portion we would normally use, and make note of how he reacts (if at all).

This will give us an idea of WHAT foods he can handle, and in what quantities.  And that will open up his diet exponentially!

For example, the Mayo Clinic diet says that evaporated cane sugars are on the ‘safe’ sweetener list.  However, we’ve noticed that whenever Mr. Charm gets any, he does not do well.  (Bad diapers, bad behavior, just…bad.)

This is exactly why she recommended the food journal; every body functions differently, and what might be safe for one person is unsafe for another.  So it’s time to get down to the nitty gritty challenge of winnowing out an expanded diet for Mr. Charm.

If I could pick anything, I’d pick coconut to be safe for him.  Like I said, I can do a LOT with coconut!  We’ll see…

I really liked this lady.  She’s a mother with children close to my sons ages, which created a sense of camaraderie, and she is very comfortable talking about complicated food issues.  She never made me feel like I asked anything ridiculous, and understood things that – so far – only the other Mama’s on the FPIES boards have understood.

I told her about Mr. Happy’s reaction to my hand cream, and when I said the word “Aveeno”, she interrupted with a knowing head nod and said “Oh, yeah, Oats – that’s an FPIES biggie.”

See?  No one else has gotten that!  Just like with the GI and the Allergist, it was SUCH a relief to talk to someone who “gets” it.

I wasn’t starting from square one with these folks.  We were starting from where we are, and that made the trip to Atlanta the best thing I’ve done for my kids so far.  

We have a support team now.  We have good plans in place.  We have a Team.

We have hope.