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.

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. 

Jake at 18 months

I thought about apologizing for not updating the last month, but I don't want to.  No news is good news? Yes, I think that saying says it best. 

Jake turned 18 months old yesterday.  How did that happen??

Jake is weaned.  *sniff*  It has been about 6 days since he's nursed.  He's been doing really well.  We've had a few bumps, then I'd give in and nurse him, but I found I was just confusing him more.  So I did the unthinkable.  I ate a banana.  Then I ate sushi (dear God, how I've missed sushi).  There was no way in hell I would nurse him after that!  And guess what?  He didn't really seem bothered by it.  If he did ask for it, I would say it's "all gone".  He'd fuss for a minute, then move on.  I'm now going through what I feel are like baby blues as my hormones start to adjust once again.  I have mixed emotions, of course.  Happy to see him thriving without me, sad to let that special nursing relationship go.  But it really was time for both of us. 

I've been much more lenient with Jake's food over the past month.  I still scan every label, however.  If I don't see the word:  rice, oats, quinoa, or bananas, I deem it safe. I am grateful for the restaurants that put their ingredients online.  It has made a world of difference.  It takes some effort, but we feel normal because of it.  I don't think anyone really knows how much I still think of FPIES and still watch every little thing he eats.  But, I think this is a good thing.  It's not a big production anymore.  It's just something that is second nature and we deal with now.  I have a feeling in another year we will be one of the very lucky families that will put this strange, rare syndrome behind us.

He eats pizza with the family every Friday night now.  You have no idea what this means to me.  We have had pizza night every Friday since before my daughter was born (she's 8 now).  He can participate.  He loves that he eats what everyone else is eating.  And he likes it!

Most meals I cook he can eat.  Or I have learned to modify to make them safe for Jake.  Nobody has noticed.  We all eat the same food.  I don't feel like a short order cook, making different meals anymore.

I still have a few main things I want to trial.  Jake still hasn't had any beans.  He hasn't reacted to them through my milk the past few months, so this will be trialed soon.  (It feels strange not having my nursing safety net for trialing!)

Jake can eat things that contain soy... but I haven't tried straight soy beans yet. 

Jake has still had a few bad diapers... but not FULL REACTION diapers.  He had one bad blowout this month.  I have no idea what caused it.  We had gone to a frozen yogurt place, but the ingredients in the yogurt seemed fine.  They did have a gluten-free yogurt that contained rice milk, maybe some cross contamination?  Who knows.  Truth is, it was no big deal.  He never complained of a tummy ache.  He woke up from the nap with a bad blow out.  It was over. 

Jake has his 18 month appointment next week.  I'm hoping we'll see weight gain and good iron levels!  He looks healthy.  He talks a mile a minute, saying new words every day.  He makes us all smile with his sense of humor and overall cuteness.  Things are going well. 

Truth is..

Truth is... we've never really followed our allergists advice.  Dairy, check.  Wheat, check.  Soy?  Hmmmm.  Let's just say I plan to up my soy intake for the next few weeks as we start weaning.  That will be the last big bang. 

Truth is... I gave Jake formula.  He hated it, of course.  I really didn't expect any different.  He doesn't like anything but breast milk and water.  I will probably end up sneaking the can I bought into his food.  After that?  Who knows if I'll buy another can or not. 

Truth is... I kept a journal during my other older kids toddler-hood.  Guess what?  They ate the same foods Jake is eating practically, without breast milk or formula.  And they thrived.  They are now super intelligent, well functioning kids, who like sushi. 

Truth is... if Jake passes soy, I may try ascorbic acid next.  And if he passes that... I'm going all willy nilly on his diet and let him have anything that doesn't contain rice, oats, quinoa, beans or bananas. Period. 

Truth is... there's ascorbic acid in formula. He didn't react. WTF?  Gerber??  Do you have an answer?

Truth is... Mama gut hasn't failed me yet. 

Allergist Appointment

Jake had an allergist appointment today.  All went well.  He was pleased with Jake's progress and new foods, of course.  He had a few suggestions to get more calories into the little guy.  With our recent pass of corn and dairy, he'd like us to try some Toddler formula for a calorie boost.  I'm not sure Jake will agree with this, but it's worth a try.  The boy only likes water to drink.  He'll drink OJ or milk every once in a while, but only if his older brother does!  So we'll see how that works out. He gave me the OK to start weaning.  On one hand, this makes me happy. He's getting enough variety in foods, he should be OK to be weaned now.  However... my baby doesn't need me anymore.  It's hard.  I'm ready to have my body back, but I'm not ready to let my little guy grow up either.  We have always had the breast milk to fall back on.  It's always been our safety net.  But we have so many foods now, I feel confident he's fine without me.  That being said, I'm starting to take away the 3am feeding first.  Then we'll start weaning the daytime feeds.  I imagine in a month or so we'll be done.  It's a bittersweet feeling. 

We don't need to go back to the allergist until Jake is 2.  He plans to do a patch test again at that time with the foods Jake had FPIES reactions to and the foods he had reactions to with his first patch test.  It will be interesting to see what the results are. 

Interesting happening this week.... I ate a sandwich from subway that unknowingly had rice and oats in the bread.  Jake had a bad diaper.  Undigested food, acidic, yucky.  Only one though.  I've had that sandwich before.  Only a handful of times.  This is the first time I really looked up what was in the bread.  Anyway, I'm wonder if any of our other bad diaper experiences were related to a subway sandwich, or actually the food trial we were doing at the time.  Just a thought. 

Anemic.

Jake had his 15 month well check today.  He's growing.  20 lbs, 2 ounces (20%), 29 inches (3%). He's on his own curve, the doctor tells me. 

My main concern I wanted to share with the pediatrician was Jake's new "breath holding" behavior.  It has happened twice in the past month.  The first time it happened, Jake fell off a stool.  He didn't hit his head.  He just laid there doing a silent scream.  He was red faced.  We were waiting for the giant wail to come out, but it never came.  I picked him up, he went limp in my arms.  He wasn't breathing.  We called 911.  We were scared.  He came around with in seconds, but was very lethargic.  A few minutes later, we was crying and back with us.  A few minutes later he was FINE.  We stopped the ambulance from coming and thought maybe he had the wind knocked out of him. 

Last week, we were all walking to the park.  Jake went to tackle his big brother.  Big brother faked him out and Jake fell to the ground.  He hit his head.  I picked him up immediately.  He did that same silent scream.  We waited for the wail.  It never came.  His eyes rolled back in his head and he became very lethargic.  It scared us.  Again.  Within minutes he was crying, then back to his old self. 

Apparently these breath holding spells are normal.  It is the body's way of saying... "if you're not going to breath, I'm going to make you pass out so you're lying down and blood and oxygen can get to your head easier". 

However, breath holding spells can be a sign of anemia.  The pediatrician did a quick hemoglobin check.  Guess what?  Anemic.  His hemoglobin level was 10. 

The doctor wants Jake to start iron supplements.  I don't think they make them without ascorbic acid.  I'm not willing to "trial" ascorbic acid yet either.  I may see if I can have the pharmacist compound some for us. 

So guess what Jake is trialing this week? Beef. This boy needs some iron.

Failing Strawberries

What a mess, of the diaper explosion kind.  We're talking poop from head to toe.  TJ's freeze dried strawberries are the obvious culprit. About 1/4 cup of them.  No more strawberries. 

The end. 

Dairy - Winning!

I've been waiting to use that one!

I have finally given Jake a full serving of dairy.  No issues.  Nothing.  Nada.  He and dairy are holding hands and singing Kumbaya.

I made organic whole milk yogurt yesterday in my $18 Yogurt Maker.  It worked beautifully!  Perfect yogurt tang.  The face Jake made when trying it this morning was priceless.  It was more tolerable when I added a little sugar and coconut to it.  I have some Mango Sorbet leftover in my freezer.  I think it will be great mixed in with the yogurt! 

Jake ate about half of his little jar of yogurt, so I decided to take the rest and replace the canola oil in our Millet Pancake recipe.  I also replaced the 1/2 cup water with 1/2 cup organic whole milk.  They turned out fantastic!  Jake ate three of them.  Big Bro ate seven of them.  I'm not kidding... SEVEN.  This was after Jake and Big Bro had already eaten breakfast!

We are basking in dairy goodness over here. 

FPIES just got a little easier to tolerate.

P.S. I let Jake taste a little double chocolate frozen yogurt at a school fundraiser last night. 

P.P.S. I tried strawberries again.  He was fine. 

One of THOSE nights.

I'm left wondering.... reaction or stomach bug?

We had dinner at my parents house around 5pm.  My mom set out a big plate of strawberries.  I have been giving Jake strawberries off and on, when I had them, if we weren't trialing anything.  Not an official trial, but a trial nonetheless. He's had a quite a few lately.  I'm not sure how many times he's had them though.  Four, five, maybe?  (must be more vigilant with the food journal, kicking myself)

He BEGGED.  I CAVED.  He had a strawberry.

Fast forward 11 hours.  YES, 11 hours.  He's crying in his bed.  He's covered in vomit.  I bathe him.  He vomits again.  I nurse him.  He vomits again.  Then he's WIRED.  Running around like a crazy guy.  Alternating between whiny, clingy baby, and rambunctious, hyper boy.  Three hours later, he asks for milk and to go to sleep.  He nurses and is now napping.  At 7am.

Sounds more like a mild reaction.  Certainly not shock-like symptoms.

The flip side... his five year old brother was up all night two nights ago vomiting.

I really thought the strawberries were safe.  He had no GI issues eating them in the past.

So which is it?  *sigh*

Allergist Appointment

We had a follow up with the Allergist today. I feel so lucky to have found him.  He may not have the most experience with FPIES kids, but he seems so on top of things and I feel like we want the same things for Jake. 

We're going to start meats!  Turkey for my little turkey!  I am on the hunt for a fresh, organic turkey to roast for Jake.  We will take it slow for a week, maybe a tablespoon of turkey, then increase our serving size over a few weeks.  I hope the extra protein will help keep Jake full longer at night.  The night nursing is killing me right now. 

Dr. S. suggested sorghum to try as our next grain.  It's like he's reading my mind!

I brought up eggs.  I think being an allergist  he's just leary of eggs all together.  He agreed to try egg yolks, baked in a muffin for at least 30 minutes at 350 to help break down the proteins.

As for milk, I wonder if he'll ever let us try anything dairy!  His other FPIES patient has a trigger of milk.  He is 2 1/2.  He was just in yesterday to re-trial milk.  I guess it was a horrible fail.  Four hours had passed and they really thought he was going to be fine, then BAM.  Reaction.  The IV he had in ready to go, came out.  They ended up calling an amblulance to take the little guy in to be monitored in the ER.  How heartbreaking.  I feel so horrible for that family.  I'm so scared for the day we re-trial rice and oats.

Anyway, while Jake doesn't show any discomfort from my dairy intake, we agreed to hold off on milk for now. 

We go back to the allergist in four months.  I'm hoping we have another grain and few meats passed by then!

The Allergist

I think our circle of doctors is now complete.  We met with the allergist recommended by Jake's GI doctor yesterday.  He was fantastic.  He listened, he typed as I spoke, writing everything down, and he listened some more.  He spent almost an hour with us.   After hearing our story, he said it sounded like FPIES.  He has one other FPIES patient!!  I was sad there's another patient, yet thrilled he's already been through this.  His other patient is almost two years old. 

He seemed so knowledgable and immediately gave us a plan.  We are going to do patch testing the first week in November for all the main trigger foods for FPIES, and also quinoa.  He agreed that quinoa would be a good grain to get under our belt.  Especially since I eat it almost every day now that rice is gone from my diet.  He isn't reacting at all to the quinoa in my diet.  He said to continue to eliminate Jake's offending foods from my diet.  He asked how I felt about nursing until at least 18 months.  I said I would.  He'd like breastmilk to continue to be Jake's main form of nutrition.  No cow's milk or milk alternative until then.  His other FPIES patient has a trigger of milk, so I think he's really leary of the milk.  He said if I want I can try Neocate or Elecare, however there are corn solids in those formulas.  And with the ascorbic acid fail, I'm scared to try anything with corn in it.  I will continue to breastfeed until 18 months for now.  He asked that I start taking a prenatal vitamin again.

After the patch test he will determine what foods we should start trialing next.  We won't trial any of our failures until Jake is 2 or 3 years old.  He will do the trials in his office.  He gave us a plan if we have another full blown reaction.  Since that last reaction was not as severe, he said we can monitor at home unless Jake becomes unresponsive, turns a different color, especially around his mouth, or is completely listless.  We are to call 911, have them start IV immediately, route us to Phoenix Children's Hospital, then he will consult with the ER.  He also prescribed the epi pen in the condition Jake is having an anaphylaxis reaction.

I left his office feeling very confident with his care.  He said to google "fpies" the few top links are good ones.  We all know I've already done that... to an extreme.  He said he tries to stay on top of the FPIES research.

I feel good.  I feel like we've really lucked out with our doctors.  I've read so many stories of families struggling to find doctors who even know what FPIES is, let alone how to treat it.  We have a plan.  That's all I need right now.  I know things are going to get harder once Jake gets a little older.  I'm enjoying this calm we have now.  A few good doctors, a plan, five solid foods, and endless milk supply.  Jake is thriving and happy.   

Change the rules or get a dog?

The game of FPIES just changed, and now we need some new rules, since we don't have a dog.  Jake started CRAWLING.  Gone are the days of a quick scan of the carpet where I set Jake down.  He's never where I leave him now.  I'm trying hard not to empty my pantry of all foods that contains rice and oats... hello granola bars!! Granola bars are a staple. They are their own food group in our house.  My kids eat them EVERY DAY.  This is the day I wish we had a dog.  Dog's eat crumbs.  How convenient would that be?  Unfortunately, we have a cat.  And hubs is not a big fan of dogs.  And I'm not ready to have the responsibility of another "baby" in the house that needs to be potty trained and fed and taken care of.   

Since a dog is probably out of the question...  We need to change the rules.  No more eating.  Just kidding.  We've started eating only at the kitchen table.  Which means I have to start sweeping up the floor after every meal AND snack, which means I'm sweeping all day long. The old rule was to only eat on the tile.  Easy clean-up.  But Jake can get onto the tile now.  My kids don't like the new rule.  I don't like the new rule.  I really like to sit and eat my dark chocolate covered pomegranate (yes, I have a costco size bag), mixed with a few nuts, while watching season 6 of Lost, or our new obsession, Dexter, after the kids have gone to bed.  But I think I need to follow the rules, too. 

Accidental ingestion just became my biggest fear. 

Official Diagnosis - FPIES

Today was the big day.  Jake's first visit to the GI.  Why are doctors so young these days? It certainly can't be because I'm getting older.  So he took down some of my history about the pregnancy and birth, then Jake's feeding history (EBF), and onto the food journal I've kept since Jake has been having reactions.  I decided I wouldn't even say the words FOOD PROTEIN.  I really wanted to know what his professional opinion was before I started shoving medical articles at him.  Do you want to know what happened next?  He said it sounds like a food protein allergy.  We call it F-PIES.  I nodded.  "Oh you've heard of FPIES?".  I was relieved.  I was relieved that we didn't have a doctor baffled and scratching his head.  Or declaring my son had just had a stomach bug.  Or ordering a bunch of unnecessary tests. He had actually heard of FPIES and diagnosed Jake with it. 

Now we have a PLAN. I started asking some specific questions about possible foods to avoid.  He suggested we see an allergist and recommended one.  He wants us to hold off on grains for the next few months.  We're going to focus on adding some more veggies and fruits to his diet.  We're going back to Dr. GI in November and will meet with him and the nutritionist.  She will answer any more food specific questions I might have.  When the time comes to re-introduce rice, oats and bananas we will do it in a controlled setting. When he left the room I felt like crying.  Crying because my poor little man has to go through this.  Crying from relief that this is something my son will grow out of.  Crying because here is a doctor that seemed to understand these symptoms and had a name for it. 

I had noticed Jake spitting up a lot on Saturday.  Friday night I ate rice.  I decided to eliminate the offending foods from my diet completely.  The doctor also agreed with this decision, as well.  He said such a small percentage of the offending food's protein ends up in my milk, but it does have trace amounts.  It's possible it could be bothering Jake's tummy.  It certainly doesn't hurt to eliminate.  Since then, we've had no spit ups. 

Tomorrow we will be trying CARROTS!  Something with some color!  I'll be heading to the store for some fancy organic carrots and steam them myself.  Maybe I'll even chop up a few cooked ones for Jake to practice some fine motor skills.  Maybe he'll even get one or two in his mouth.  Just like a normal 7 month old would.

Sweet Potatoes and Pears

The one good thing about ignoring the three day wait rule when we first started feeding Jake... he tried quite a few foods the first few weeks of solids.  We found his reactions occurred the 2nd or 3rd time the food was consumed.  We learned quickly that he could eat sweet potatoes!  Sweet potatoes are versatile too... mashed, boiled, baked, fried... however it always tastes the same.  At least we can play with texture a bit.  He had tried pears a few times those first few weeks. I thought it may prove to be a safe food, as well. He's had pears every day for over a week now.  Jake can eat two foods!  I'm afraid to try anything else.  The reactions are just so awful to watch him go through.  So we'll stay with these two until we visit the GI doc next week. 

I'm trying to come up with some questions and figure out what I want out of this GI appointment.  I don't need him to diagnose Jake with anything.  I just want a PLAN.  I don't want any unnecessary tests either.  I just want a plan. Meanwhile, I'm trying to come up with some questions to ask the doctor.

Here we go...

Jake is my third child.  My baby.  When we started solids a month ago, I assumed he'd be like the other two.  I was wrong.  It started one evening after a meal of oatmeal with avacodo mixed in.  We thought he had a stomach bug.  He vomitted for two hours straight, became very lethargic and listless, then fell asleep.  After a call to the pediatrician, we decided to let him sleep rather than take him to the ER.  He woke up like nothing happened, hungry and happy.  The next incident was a few days later with rice cereal mixed with bananas.  Same reaction.  I thought maybe he still had this "stomach bug".  A few days later I started over with just rice cereal.  I thought I better stick with the three day wait rule.  He ate a little rice cereal (later in the evening) and went to bed.  A few hours later he was crying, lying face down in vomit.  Never again will he eat before bed.  Mommy GUILT.  This is when I searched the internet for some answers.  The only thing I could find was a rare condition called FPIES.  Does he have it?  I don't know.  I'm not a doctor. We've had two more reactions since then.  Once to just bananas.  The last reaction was to 1 teaspoon of rice cereal.  Our pediatrician had us feed him only breastmilk for four days. After the four days, we gave him rice cereal.  My hubs and I knew what would happen.  And it did.  Again. 

Something's not right with my little guy's tummy.  The pediatrician has done a full allergy panel that came back all negative.  He has NO FOOD ALLERGIES, according to his blood.  So what is it?  We have an appointment with a GI doctor next week.  Hopefully we get some answers.