Ups and Downs

We're on our way UP.  Jake is happy and feeling good again.  I'm ready to finish our white potato trial.  Sleep, well... we're only up 3 times a night again.  After the past week, this seems doable for some reason.  Last night he slept for 5 hours straight.  Every time he woke up during the night it wasn't because he was in pain.  He was just barely fussing and very happy and smiley when I came into his room.  I think he was just lonely.  He's used to having me with him throughout the night, I suppose.  I hate having downer posts.  I don't feel that is totally me.  But I'm leaving them there as a reminder. 

Happy Halloween!  The hubs picked up a dark chocolate Godiva bar yesterday for me.  It was yummy and had no sign of rice, oats or corn. Just pure chocolate and sugar! I've had some treats. Is it time for some tricks? 

Elimination Diet

Wow.  I didn't realize how tough this was going to be.  I'm tempted to start with just a few items to eat, like Jake, and grow from there.  Do I have the patience, strength and will to do this?  To do it for another year, most likely?  I'm hungry.  I'm really hungry.  I can't believe we're 3 days away from Halloween and I haven't had one piece of candy.  I've lost 6 pounds.  I guess the one positive is that my old jeans fit.  The bad news is that I get cranky when I'm hungry.  Every time Jake cries I wonder if it is something I ate and I blame myself.  I over analyze EVERYTHING.  He was up all night with the sore throat/fever virus he had.  But now that it's over, he's still up all night.  I'm pretty sure the big helping of snap peas I ate were a culprit on Sunday.  Then I made this hummus pasta for dinner on Tuesday night.  Is a chickpea a pea or a bean?  Or both?  Needless to say, I'm cutting beans out for now, too.  I'm pretty sure he was up 5,362 times last night.  Give or take a few.  Poor little man.  I just want him to be happy.  I just want Jake to feel good.  We haven't been trialing anything.  I'm anxious to see what comes back on his patch test in a few weeks.  I feel like that will definitely give us some direction and we can start trialing more confidently again.  In the meantime, I'm trying hard to keep my diet to a minimum and get Jake back to feeling good. 

I feel like nobody "gets" it.  No more fast food.  No more eating out.  I just canceled a trip I was supposed to take in a few weeks.  A friend's 40th birthday party in Southern Cal.  I was going to take a quick 24 hour trip.  When I agreed to go, I assumed Jake would be further along.  Eating more foods, nursing less.  I think the reality of this hadn't really set in.  It's starting to.

I'll take it day by day.  Today I continue to eat what I know I can eat.  Tonight, maybe we'll all sleep. 

Medication and FPIES

Friday night Jake started running a fever.  I waited.  I hoped it would go away on it's own.  Turns out it was just the start.  I debated with myself at 2am.  Do I give him the Tylenol?  He had been up ALL night.  Nobody was getting any rest.  But if I give him the Tylenol, there's a chance he'll have a reaction.  He had a temp over a 100 for a while now.  I caved.  I gave him the Tylenol.  Tylenol contains corn syrup.  Not a specific fail for us *yet*, but corn, nonetheless.  Not good judgement at 2am.  His fever broke and he went to sleep.  Two hours later (anyone watch spongebob?)...  Crying, screaming, horrible tummy pains for my little man.  It lasted about an hour.  I felt awful.  Granted it was a minor reaction, but he's already feeling horrible from being sick.  I don't want to try Tylenol again for fear of a worse reaction.  His reactions seem to get worse every exposure to an offending food.  Ugh.

So I went to the pharmacy first thing in the morning.  He recommended FeverAll suppositories.  No corn, and it's going in the other end.  No exposure in his gut.  These have been working OK.  It's Monday, he still has a fever and we've had three nights with no sleep.  *YAWWWN*  We visited the pediatrician this morning. Thankfully he's negative for strep, but he has a red throat.  Just a virus, she thought.  If he still has a fever by Tuesday night, bring him back in.  Hopefully we're at the end of this.

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.   

Nighttime Nursing

The truth is, it's been over eight months of nursing around the clock.  Every 2-3 hours.  Day and Night.  While Jake gets up 3-4 times a night still, his nursing sessions are shorter.  He nurses only 5-10 minutes.  Is he really hungry?  I'm starting to wonder if we are just in the rut of a very bad habit.  Yet, being the FPIES mom, I wonder how to make up those extra calories he'd be missing at night, if I were to stop.  However, he's a big fat baby.  I know it's not PC, but that's what we call him around here.  He has more chub than his siblings did.  And he's ACTIVE.  Crawling, cruising, and getting into everything.  He eats solid food three times a day, but nursing is still his main form of nutrition.  I've been toying with the idea of eliminating the nighttime feedings.  Mama guilt.  And then there's the torture of teaching a baby to sleep through the night.  I don't know if my heart can bear it right now.  Decisions.

In the meantime, we've put trialing on hold for now.  Jake's body needed a break.  I mentally needed a break.  The ascorbic acid really threw me for a loop and now I'm scared.  However, I did make it to Whole Paycheck  Foods this weekend.  I found the freeze dried pears (Crispy Greens).  Oh my goodness, he LOVES them!  I like them better than the Parent's Choice apples.  They seem to melt in your mouth much quicker.  I also picked up some Just Apples. I found Organic Prune juice that is JUST prune juice.  No ascorbic acid.  I have blueberries in the freezer, white potatoes in the pantry and now prune juice.  I have plenty of foods ready to go.  I just need the confidence. 

The irony is... Jake failed ascorbic acid today.

So after freaking out over Jake's spit up incident, we failed ascorbic acid.  At least that's what I think we failed.  I picked up some prune juice with the ascorbic acid in it.  I was a little leary, that's two things we haven't tried.  I didn't want to do them both together.  So I thought first I would try some jarred pears that contained pear concentrate and ascorbic acid.  He has fresh pears almost every day.  He has had jarred food a few times before he had any FPIES reactions.  This was probably his third time having it.  Three.  It's the magic number.  He ate the whole stage 2 jar after his nap today.  One hour later (less than normal reaction time of 2 hours) he vomitted.  Then he went into his zombie state.  I was very confused.  This wasn't his textbook reaction, but it was definitely a reaction.  He only vomited once.  Then it was the lethargic, red rings around his eyes, stiffening with stomach pains every once in a while, then back to being lethargic.  Even his brother who always puts a smile on his face, got nothing.  Every once in a while, he'd look at me with this pitiful, pleading eyes, rubbing his face, obviously in pain, then surrendor and just lay there, unmoving.  I kept waiting for the vomiting to start.  I kept wondering if I should take him to the ER.  I kept thinking... when is he going to start the full blown reaction?  I always thought his lethargy was caused by his extreme vomiting.  After today, I'm sure it's not.  So what's going on inside his little body that makes him react this way?  What puts him in the zombie state?  After about 90 minutes it was over.  He was asking to nurse.  He nursed, fell asleep for about 45 minutes, then woke up like nothing happened.  I googled ascorbic acid.  The man-made version is derived from corn.  Is it corn then?  Then I thought... I just bought a bag of corn chips a few days ago.  I've eaten a lot of them.  Bad, I know.  Maybe that's why he wasn't sleeping well the past few nights?  Maybe that's why he spit up?  I think I may drop all corn from my diet.  I mean all corn, even corn syrup. 

FPIES is like this giant puzzle that I feel like I never have all the pieces to.

There is rice in Rice Crispies.

I put Jake down for a nap half an hour ago.  Last night he was up every two hours.  While he does wake up at night quite a lot (2-3 times), 4-5 times in one night is excessive.  This morning he's been happy, however.  We went to Big Bro Z's soccer game.  It was snack day for us.  Without a thought I picked up rice crispy treats.  Hello!!! Rice!!  Doh. I kept an eye on Jake. No one touched him with their rice crispies and they were gobbled up fast.  We stopped by Dunkin Donuts on the way home from the game.  It was an 8:00 am game.  Dad's out of town, so I try really hard to be the fun Mom.  He was a trooper and I put him down for a nap late.  It's been two hours since the rice crispies were passed out.  Jake just started crying.  I check him.  I pick him up. He burps.  He spits up all over me.  I panic.  It's been exactly two hours.  He burps a few more times.  I sit down with him.  Rock him.  Is he reacting?  He's tired.  He acts like he wants to nurse.  I let him.  Is he having a reaction?  He falls back asleep.  I rock him.  Twenty minutes later, I finally set him in the crib.  I watch him.  Am I sure he's not reacting? 

The whole scenario plays out in my head.  My mom is 40 minutes away right now, I can't call her.  That leaves Pops.  The one with the really bad gag reflex.  I envision him driving us to the ER.  Vomitting baby in my arms, Pops trying hard not to vomit himself.  Big kids afraid.  Me trying to contain the vomit.  Explaining everything to the ER when we get there.  We haven't seen the allergist yet.  We go in a week and a half.  We don't have a letter explaining everything from a doctor.  Do I explain FPIES?  Do I demand an IV right there?  What are they going to say?  Are they going to think I'm crazy?  The last reaction was a few months ago.  Was it as bad as I remember? 

I realize I need some kind of plan if we ever do have a reaction again.

Jake's OK.  No reaction.  It's been an hour now.  Whew.   I rack my brain.  When he spits up, it's usually something in my milk.  The vomitting is a reaction from something he ingests.  Was it something I ate last night?  I didn't have anything out of the ordinary.  He was up a lot last night.  I had my usual toast with peanut butter this morning to eat.  Oh the donut.  What's in a donut.  Google ingredients.  Nope.  No rice or oats.  There is barley, however.  I've always been suspicious about barley.  Once I had a beer.  He spit up.  Hmmmm.  Maybe someone breathed their rice crispies on him?  Maybe he *gasp* got a hold of one of those dang rice crispies??  If he did he'd be vomitting.   It was only some spit up.  More than usual.  But still. 

I'm never buying rice crispy treats again.

Nothing to report

It's a boring FPIES week for us, which is always good, right?  With the hubs gone, I'm freaking a little about trialing anything.  Right now we're trialing cinnamon.  Does that even count?  We're on day three.  Hubs picked up some freeze dried apples with organic cinnamon.  They taste pretty good.  (one for me, one for Jake, one for me...) They're in big chunks, so I've been breaking them down into little pieces.  He likes the cinnamon.  Although, he likes anything he can grab with his fingers and put in his mouth.  He's constantly reminding me that I really need a new vacuum cleaner.  Oh, he trialed a little sand at the playground yesterday, as well.  He didn't like that AT ALL.  I guess he does have some opinion on what he deems as edible.  Cat hair, definitely edible. Board books, paper?  Edible.  Sand.  Not Edible. 

Prunes are still on my list of "want to trial", although he seems less constipated the past few days.  I think I may pick up some prune juice and just add a little to his food or water.  I need to find a juice without any extras in it.  Ahhhhh the constant quest of an FPIES mom.  Give it to me straight up.  No extras, please!

Sunday Morning

It's Sunday morning, I'm barely out of my pj's at 10am, kids playing amongst what looks like the remnants of a tornado which we call our house, and mountains of laundry calling my name.  I'll get to it eventually today, but in the meantime I'm wondering what to trial for Jake this week.  I thought I would do something simple like white potatoes, then maybe olive oil and some spices.  However, Jake's been very constipated this week.  I'm thinking of trialing prunes.  I can't find any info on failing prunes with FPIES.  But how many babies are actually constipated with FPIES?  I don't think it's a food that gets trialed very often.  After three passes in a row, I think my confidence has grown, yet I feel like we're due for a fail.  This would not be the best week to have a reaction.  Hubs is leaving for two weeks for work.  Luckily I have the grandparents here in case I need some help if we have a reaction.  I think we'll do prunes this week, and maybe white potatoes next week.  That's the plan today, anyway.  We all know how quickly it can change.