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. 

An apple a day...

Squash was a success!!  Yay!  Of course, after we started trialing it, I find out that squash is one of the trigger foods for FPIES.  Thankfully we passed.  That gave us a big boost of confidence.  It also made me a little more aware of what some of the main trigger foods are, and what I should avoid for a while.  In light of the fact that the hubs will be OOT for a few weeks, I'm going with some safer foods next, anyway.  I'm a little nervous Jake may have a reaction while he's gone.  I think if he has any warning signs at all, I'll probably stop the food trial.  I can't imagine taking three kids, including a vomiting baby to the ER by myself.  So apples it is for this week.  Possibly white potatoes next week?  Hubs picked out a nice bag of organic apples yesterday.  I also found a package of freeze dried apples at the big box store.  It was the ONLY item in the baby food section that Jake could eat at this point.  Every one of those little fun finger foods contain rice or oat flour.  EVERY. SINGLE. ONE.

On a side note, there has been an FPIES Research Fund set up to hopefully find a cause and a cure for FPIES.  CHOP needs $300,000 to fund the research.  There is a link on the side of my blog.  Every little bit will help!

Wood - Pass?

I'm thinking of giving a pass to wood for Jake.  I just can't figure out what food group it would be, though.  This boy will chew on anything wood.  His crib rail, the coffee table, Jenga pieces, blocks, the leg of the kids' Ikea table, whatever he can roll/scoot/army crawl to.   He's been sampling it for over a week now.  Surely wood is a pass, right?

In the meantime... we're on day three of butternut squash.  No real reactions yet, just a little burpy.  I'm starting to think that burpy is his normal and I'm overreacting to reactions.  The past two days have been great, actually.  He's been very happy.  He's been napping well.  And only up twice during the night.  That's normal for us.  Sad, isn't it?

Thankfully he doesn't react to COFFEE

Well, I'm not ready to throw in the towel on the squash, yet.  But I will say yesterday was just an OFF kind of day.  Jake was really gassy, burpy, clingy and just plain not happy.  While he's normally easy to put down for a nap, yesterday it took me over an hour just to get him to go to sleep, then he only slept for about 45 minutes.  The night was miserable, as well.  He was up at 11:30, 2, 3, 4, 5 and then I gave up.  Three of the times he was up he had pooped.  I'm not sure whether to blame the squash or not.  His top two teeth look like they're going to come through pretty soon.  And he won't have a real reaction until he's had the food 3 or 4 times.  This was just the first day.  I'm going to skip squash today and try again tomorrow. Let his tummy feel better today.  Hopefully get some rest tonight.  He's already on his second nap of the day and it's only 10:30.  Poor little man is tired. Thank God he doesn't react to coffee in my milk.  I don't think I would have survived the morning without it.  I'm sure I see a Diet Dr. Pepper in my future, as well.

Fresh Veggies

This weekend Big Sis N and I planted a garden!  The hubs had made a nice spot for us on the side of the house.  He and Big Bro Z cleared the area, put down a raised bed my Dad had made and filled it with nice dirt.  Big Sis N and I turned the dirt, added some peet moss, planted, mulched and watered.  This is our first time having a garden.  I always joke that I'm a good harvester.  My Dad has had gardens for 30 years.  I'm really good at picking and eating.  Not so much at growing.  Since the grandparents live within walking distance to us, I never had the desire to grow my own since I could just walk down the street and pick some nice organic veggies from Pops.  BUT Big Sis N has been begging to have a garden and Pops made the raised bed for "her".  So here we are, planting carrots, onions and green beans.  Next week I think I'll add some spinach and zucchini. I'm crossing my not so green thumbs that something grows.  I will admit it felt good to be out there sweating and getting dirty! 

In the meantime, it looks like Jake will start butternut squash this week.  I had originally planned on spinach (to get a little iron), but based on what I've read, we should wait until at least 10 months.  There is a possibility of high nitrates in Spinach?  I may have to research a little more.  I didn't want to chance anything though.  So butternut squash it is.  Another orange veggie!

Rice is not nice

Wednesday was Grammy's birthday.  She requested salmon for her birthday dinner.  I usually serve it with rice, but decided to do quinoa since I'm eliminating rice from my diet.  Grammy had never had quinoa before, and I thought she would like it, too.  On a whim, I picked up some sushi.  Bam.  The next day, Jake was spitting up.  Just a little bit.  I was bummed.  I thought it might be the quinoa.  I didn't realize until right this second, that it was the rice in the sushi!  The hubs is making dinner tonight and mentioned he would pick up some sushi, too.  I said I would pass since I'm not eating rice. Then it dawned on me.  I had three pieces on Wednesday!  That must be why he spit up!  So no more sushi for me.  Sushi is one of my favorites.  I gave it up while I was pregnant.  I guess I will give it up once again.  On the positive side, maybe quinoa is something Jake will be able to tolerate. 

Tick, Tock, Tick, Tock

Today is day three of the carrot trial.  I sit and I watch the clock.  Jake's FPIES reactions happen on that third or fourth try of a food, two hours after ingestion.  Today I was brave and went to a play date with Big Bro Z.  I thought for sure we'd be home by the time that two hour mark hit.  I fed Jake his carrots and sweet potatoes at 10:45 while Z played.  When it was 12:30, I started gathering our things to head home.  We didn't get out of there until after 1:00.  Thankfully, we had no reaction.  Not even a hiccup.  I don't know what I was thinking, but time kind of escaped us.  But, if Jake is going to have a reaction I can usually tell.  He's cranky, he stiffens, he arches his back.  We call it the scorpion move. This starts an hour before his reaction.  He didn't have any of the warning signs.  I'm crossing my fingers that we have another food to add to our safe list.  Especially with all those carrot cubes in our freezer!  We'll see what tomorrow brings. 

First Trial - Carrots

Day one of carrots today!  Jake gobbled up the first little teaspoon I gave him.  He was super happy today.  I found some really yummy soft pears and cut them up in very tiny pieces today.  He occupied himself while I made dinner.  A few actually made it into his mouth and he was so excited!  I pulled him out of his high chair later and found tons of pear bits in his chair. He may not have ate a lot of the pears, but he got some good practice with his pinchers. 

I love to cook and take pictures, but I'm not a great chef or photographer.  However, I thought it would be fun to put up a little tutorial of how I make my baby food.  I had fun making it for Big Bro Z and Big Sis N, I naturally planned on making it for Jake.  I feel better knowing EXACTLY what he is eating now, especially with his FPIES.  The store bought food can have lots of extra ingredients added. 

1. I picked out some pretty organic carrots from our grocery store

2. I peeled the outer layer off.  Lovely aren't they?  Bright, orange, smooth.

3. I roughly chopped the carrots and put them in my handy dandy Pampered Chef steamer.  Oh how I love this thing.  I use it almost daily.  I have a bigger one I found at a garage sale for $2.00.  I jumped up and down screamed and felt guilty for taking change from my $5 bill.  I ran the heck out of there.  I felt like I was stealing.  If you are not as lucky to have a $2 Pampered Chef steamer from a garage sale, any microwave safe bowl and lid will work.

4.  I put about 1/2 inch of water in the bottom, put the lid on and put it in the microwave.

5.  I pressed this button.  If your microwave doesn't have this button, microwave about 5 minutes on high (maybe a little more if your carrots are a little chunky like mine are).

6.  Once the carrots are tender and easy to pierce with a fork, place them into a blender or food processor along with the water.  I used this cheapy food processor that has two settings, Lo and Hi.  I chose Hi.  I have no patience.

7.  After a few seconds on Hi, it looks like this. Yum!  Orange!  Puree!

8.  Next spoon the yummy orange carrot puree into an ice cube tray. There is no way to make this look pretty.  No matter how good the lighting is!

9.  After a few hours, the carrot cubes are frozen.  Twist and turn your tray and pop out your carrot pops.  I've found they equal about a tablespoon each.  Place the carrot pops into a labeled freezer bag.  Next time you want to serve up some carrots, pop them in the microwave for 45 seconds.  Your baby will thank you!

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.

Gaining Weight

Because there is never a dull moment around this household... Jake woke up yesterday with PINK EYE.  A quick visit to our ped resulted in some drops and quick weigh in.  Wow.  He's up to 18 lbs 2.5 oz!  I was so happy!  Almost a full pound in the last month.  I kept a journal on big bro Zach (now 5).  I looked back at his weight stats.  He was about the same as Jake.  However, I was reminded that between 9 and 12 months he had no weight gain.  That's the time he took off crawling, climbing, and running.  All that activity, coupled with self-feeding, starting to wean off breastmilk, meant no weight gain.  He didn't have a limited diet like Jake will.  This just brought on some worries about what the future will bring for my little man.  Keeping positive... we have a great baseline. 

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.