Bye Bye FPIES.

JAKE is officially done with FPIES.  Done.  He is 3 years, 6 months old.  I'm kind of beside myself. I don't have to check labels, ask servers for ingredients, call ahead to restaurants, deprive my poor kids of french fries (actually I won't miss that).  

Now we deal with the regular three year old struggles.

Separation anxiety (we started preschool last week), potty training, tantrums, and picking battles as they come.  

But we don't have to deal with food any more.  It may take me a while to stop checking labels.  

I'm glad I kept this journal.  Thinking back to his first birthday with only a few safe foods and still nursing like there was no tomorrow with a strict elimination diet, it seems like so long ago.  Jake's pediatrician still doesn't recognize FPIES.  It seems like it almost didn't happen.  Things are moving along here.  Kids are growing up.  Time doesn't stand still. We didn't make a big deal of it.  We never did.  We were always just.... careful.  We were lucky.  We only had three foods to worry about.

What have we done to celebrate?  Nothing.  We haven't made a trip to a forbidden fast food joint, which I figured would be the first thing we'd want to do.  Life just keeps going along as it did.  Jake's tried a few different items we love with rice.  Rice Crispy treats, sushi, etc.  He doesn't really like any of it.  

So that's it.  We're done.  Wow.  

I'm not sure it's really sunk in yet.   

Bananas PASS!

"I'm big now, I can eat bananas" - Jake

No reactions whatsoever.  He's had them just straight out of the peel and mixed into smoothies for over a week now.  He's one happy dude.

Next up is rice and oats.  Not sure when because our schedule gets really crazy starting next week.  But I have a lot more confidence in trying these two, now!  

Onward! 

Day 1 - Banana

Go Bananas, B-A-N-A-N-A-S!

My excitement is not as high as that fun cheer we learned as kids. It is with great hesitation and a sense of mommy guilt that I just fed Jake a few bites of banana. If he gets sick, it's my fault.  Right?

HOWEVER, Jake has officially been signed up for preschool starting in August.  The truth is I need to KNOW what is going to happen when he eats a banana, a rice crispy treat or a cheerio.  Will he vomit profusely?  Will his body go into shock?  Or are we passed this and he can just smile and wave and go on his merry way eating whatever the h-e-double-hockey-sticks he wants?

We shall wait and find out.

P.S. I know it's been a year since I posted... what's the past year been like?  A normal year.  Jake turned three recently. Jake likes to do whatever his big siblings are doing, he loves to hike, play baseball, ride his bike, eat candy, smile, laugh, throw tantrums, test his boundaries, play with trains, superheroes, matchbox cars and tools. He would rather wear superhero costumes than any form of normal clothing.

P.P.S.  I still check EVERY. SINGLE. ITEM. that goes in his mouth for rice, oats or bananas.  He also knows he's allergic to them and before trying anything new he says "does this have oats in it Mama?", "do these fries have rice on them, Mama?".  Kids are so dang smart.

Why can't I do it?

I haven't updated since December.  So sorry.  We had our appointment with the allergist in January.  Jake had his patch test.  We tested rice, oats, bananas and quinoa.  Oats had a slight reaction, and we're talking very, very slight.  ZERO reaction from the others.

Dr. S said we have the green light to orally challenge Jake.  The green light has been on since the end of January.  It's now April 8th.  He said challenge bananas, then rice and oats last.  If he passes, then we graduate and he hopes he never sees us again.

Why can't I do it?  Why am I so afraid?

I look back and wonder if it was as bad as I remember it.  Was he really that sick?  Did he really turn that pale gray color and lie limp and helpless in my arms?

Jake's grown leaps and bounds.  Well, he's very small (3% in height), but other than size, he has grown leaps and bounds.  My once extremely shy, hide in mommy's shoulder or behind her legs, little guy actually said hi to a stranger yesterday.  He rides his bike EVERYDAY.  He drives his brother and sister crazy.  He throws tantrums.  He makes us laugh until we cry.  He has strong opinions. He hasn't had a bad diaper in months.

Why can't I do it?

Jake turned two in February.  Two.  Time keeps moving forward.   We celebrated with Elmo cupcakes and a ride on the train.  He was thrilled.  I still say "shhh.... the baby's sleeping" when he's napping.  He's not a baby, anymore.

He can TELL me if he doesn't feel well.  

Maybe this week.  Maybe.

I will start with bananas.  He knows he can't have them.  He'll probably tell me no.  He really likes to tell me "NO".  He is two, after all.  I will keep y'all posted.

The Siblings

It's been 3 months, wow.  Things are well, here.  Jake is well 95% of the time.  Every once in a while I notice a change in his diapers that make me think he ate SOMETHING, but we still have not had an honest to goodness reaction since he was 8 months old.  I am grateful.  A few weeks ago was one of those incidents, "mama tummy owie", bad diapers, CRANKY, clingy, not a happy boy.  It lasted 4 days.  He also was sick with a fever the week before this and the week after.  Do I blame FPIES?  At this point the word FPIES rarely rolls off my tongue any more. 

We eat out occasionally.  We have our safe places we go.  We ventured out last week somewhere new.  I've learned quickly that most frozen french fries contain rice flour.  I asked.  They did.  I kindly ask my two older kids (6 and 8) to order salad with their dinner instead of french fries.  Not one complaint.  They never, ever complain.  I am continually thankful for their concern for their little brother and their simple sacrifices (salad instead of french fries!) they make without a second thought. 

We were at Costco last week.  My 6 year old asked if he could have a smoothie.  Jake says "yay smoothie!".  I ask the lady behind the counter if there are any bananas in it.  Yes, there is.  Sorry kids.  No complaints.  That's OK Mom.  Can you make us one at home?  You bet :)

So we venture on, checking labels for rice, oats or bananas, and enjoy the life of an almost 2 year old.  We go back to the allergist at the end of January for some patch testing.  If all is well, we will orally challenge.  I will keep you posted. 

Happy Holidays!

One Year Ago

One Year Ago…

• Jake was diagnosed with FPIES
• Jake could only eat sweet potatoes, pears and breastmilk
• Our pediatrician had never heard of FPIES
• I began a total elimination diet and figured I’d be sending bottled breastmilk to college with Jake
• My main resource was Babycenter Fpies group
• I stalked the Babycenter FPIES group hourly
• The FPIES United Family Fund was born
• I was a much better blogger
• I couldn’t remember what it felt like to sleep through the night
• I started reading labels on everything

• I was afraid to feed my baby Jake

Today…

• Jake still has FPIES, but it’s manageable
• Jake drinks cow’s milk instead of breast milk
• I still read labels on everything
• Jake eats everything but rice, oats, bananas, quinoa, beans
• Our pediatrician still doesn’t know anything about FPIES
• I stalk the BabyCenter FPIES group weekly-ish
• The FPIES United Family Fund has raised over $40,000 towards research
• Good Morning America did a segment on FPIES
• There are more resources than BabyCenter:  Facebook here and here or the newly launched FPIESFoundation for example
• If I get woken up at night, it’s my 8 year old, 6 year old, or snoring husband.  Jake sleeps great.
• I’m a bad blogger
• I am not afraid to feed Jake (well, maybe just a little)

A Quickie update

Jake had his 18 month well check.  He FREAKED.  Wow, he wanted nothing to do with anything.  Weighing him came down to me weighing myself (yuck), then weighing us together.  He came in around 22 lbs 8 ounces.  This put him in the 5-10 percentile which is down for him.  *sigh*  I chalk it up to our weaning and the fact that he pooped TWICE before we went :)  He squiggled and wiggled and screamed for his height check.  Somehow he was 31 inches.  WTH?  So that boosted him up to the 25th percentile.  I take it all with a grain of salt.  It was just an off day for him altogether. 

The best news about our visit?  His hemoglobin was up to 13.1!!!!!  Yes, you read that right!  I stopped giving him his iron supplements around the time that he weaned.  So this is all on his own.  I had the biggest smile on my face.  Jake... not so much.  That toe prick is what pisses him off more than anything.

Our ped finally showed a little interest in Jake's FPIES.  She said there's something on the medical boards that has popped up back east called FRIPES?  I think she's confused, personally.  I can't find ANYTHING about it.  However, she said it fit Jake to a T.  Well, so does FPIES, so I'll stick with our allergist and GI's diagnosis.