8

Oat & Rice Trial Update

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The last couple of months have been full of ups and downs!  I knew that squeezing in so many food challenges/trials over the holiday season was going to make things a little extra-stressful.  What I didn’t count on was the confusion and uncertainty that would result.

Apparently we were spoiled by all of the vomit we experienced during E’s first two years.  Sure, vomit is gross and messy and it’s certainly hard to watch your child projectile vomit (especially in the car).  However, the vomit was a pretty clear sign that E was having an acute reaction and that the food was clearly not safe for him.  Lately I’ve actually been wishing for vomit.  I know, it sounds crazy, but I just want to know for sure if E is having a reaction.  Instead we are seeing a lot of new an ambiguous symptoms.  Just when I thought we finally had an understanding of FPIES.

First we had the weird symptoms during the dairy trial, enough that we decided to proceed with caution and retrial after the holidays.  Then we went right into the rice trial, which seemed to go really well – 11 days with no symptoms!  We called rice a pass and moved on to oat.  E’s oat challenge was the Monday before Christmas.  The first day at the hospital went well and we managed to get through all of our multiple, food-intense Christmas celebrations without any problems.  Then on day 12 (when we thought we were home-free) E started to have a slight rash on his stomach and around his mouth.  It was enough for us to notice but not enough to be overly concerned.  After all, the dry winter weather has been wreaking havoc on my skin as well.  But I wanted to be really sure.  So I pulled oat for a couple of days and waited for E’s skin to clear up.

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Rash under E’s belly button on day 12 of oat trial.

Almost a week went by before both this skin and our schedule was clear enough to retry oat.  Then my dad was rushed to the hospital and I spent several days with him in the ICU followed by immersing myself in my family as we all came to grips with the loss of such a special person.  During all this, poor E was shuttled between his various grandparents’ houses and I was certainly not in a place to start a food trial. So another week or so went by.

Finally, I was ready to take on the oat trial again.  I actually convinced myself that it was going to go smoothly and that it would help me to feel better when oat was a pass.  I really needed a win, so I went for it.  I gave E ¼ cup of baby oatmeal in the morning.  We had already spent so much time working up to a full serving without any major issues so we just picked up where we left off.  We made it through the “vomit window” with no incident.  Then, in the afternoon, about 5 hours after he had the oats for breakfast, he stopped playing with his cousin to come to me and tell me that he his “tummy hurt.”  This was a really big deal because he had never, ever said anything like that before.  Part of me was so excited that we were finally at a point where he could tell me what he was feeling.  Alleluia! And part of me didn’t believe him.  A tummy ache is a pretty abstract concept, after all.  How could I be sure that he meant what I thought he meant?  And, besides, there wasn’t really anything I could do about a tummy ache.  I offered cuddles on the couch but he just wanted to go back to playing, so I figured it couldn’t be too bad and we moved on with our day.

He ate dinner just fine and was acting normally.  I didn’t really give the tummy ache or the oat trial much more thought until bedtime. He had a poopy diaper that was a little more gooey than I would have liked, not diarrhea, just a little off.  And he seemed to be bothered by the baby wipes, though there wasn’t any visible diaper rash.  But the most concerning thing was the beginning of a rash on his belly.  Ugh.

I discussed my concerns with Jonathan, who had to work late and didn’t get to see any of the actual symptoms.  He suggested that we do another day with oat, just to be sure.  We had always used vomit as our proof of a fail, and we still didn’t have vomit, so it seemed like a good plan.

Well, the next day it was clear that something was not right.  E had woken up overnight and was whiney.  He was easily soothed and was happy to go back in the crib after a couple of minutes of cuddling.  But it was odd, he doesn’t usually wake up overnight unless something is wrong.  In addition, the rash on E’s belly had gotten worse, his poop was a little more gooey, and he now had the beginning of diaper rash.  After the second day of oat he also had middle of the night waking and worsening belly and diaper rashes.  That was enough.  We decided this was a reaction to the oat.

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The belly rash returns.

I was depressed.  I really thought E was on his way out of FPIES but it was clear that oat still caused some problems.  I’m a little comforted by the lack of vomit and the fairly mild reaction despite a large serving the food.  It means I don’t have to be quite as paranoid, but we’ll still be doing our best to avoid oat, which isn’t too difficult to do.

The day 12 reaction to the oat got me thinking, maybe we better recheck rice.  We had only done 11 days of rice because the oat trial started on what would have been day 12.  So, just to be safe, I decided to confirm that rice was a pass.  We waited about a week for every last bit of the diaper and belly rashes to go away and got ready to start rice again, which E hadn’t had since the rice trial about a month ago.

I told E he was going to have rice cereal for breakfast.  He was not happy, “No mommy, don’t want rice.”  What? He always wants to try new food.  We went back and forth a couple of times,

“You don’t want rice?”

“No mommy, no rice”

“Why don’t you want rice?”

“I algees mommy!”

Well, that just about broke my heart (and reassured me).  Apparently all of the explaining I did about his allergies had gotten through.  But now I had to explain that it was ok try food sometimes if mommy could be there to watch in case he got sick.  He didn’t seem convinced but after one small taste, he gobbled up a full serving and wanted more, which I gave him.

He ate 2-3 servings of rice cereal for about 4 days with no problem.  Then on day 5 the belly rash returned along with gooey poop and diaper rash.  I stopped the rice as soon as I saw the symptoms but he continued to have loose stools and the rashes for another couple of days.

Now I was really depressed.  Way to kick me while I’m down FPIES.

I’m not too sure what to make of all this. We have an appointment with E’s allergist coming up and I’m looking forward to getting her take on all of this.  There is a clear connection between the symptoms and the food, but this is not E’s typical reaction.  Are we moving into a new world of more chronic-type reactions?  Is this an indication that E is outgrowing FPIES? Is this not even FPIES any more?

I’d love to hear from other mom-experts.  Does this pattern of symptoms sound familiar?  Does it sound like a chronic reaction to you?

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We’ll be avoiding oat and rice until further notice.  I’m really ready for a victory and planning to restart the dairy trial in the couple of days.  Please keep your fingers crossed that the dairy trial brings the good news I’ve been hoping for.

2

Dairy is a PASS!!!! (we think)

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I feel like I spent the last week just waiting for a reaction – scrutinizing every diaper, questioning every funny face, and generally being on edge.  I’m exhausted!

But there hasn’t been any projectile vomit! No vomit at all.  None.  I still can’t really believe it.

That being said, I still can’t say that I’m 100% certain that dairy is a pass.  There have been a couple of odd things that I’ve noted and that have concerned me (and my husband).

Here’s the dairy trial recap…

First, I’ll admit that I didn’t follow the trial protocol from the hospital.  Their protocol had E drinking 1 oz of milk for 3 days, then 2 oz for 3 days, 3 oz for 3 days, and 4-8 oz for 3 days.  I’ve spent a lot of time trying to come up with the best protocol trial protocol for E (and truly believe that every child needs their own protocol) and so I decided to modify this protocol to look a little more like our strict protocol.  I gave E 1 oz for 2 days, 2 oz for 2 days, 3 oz for 2 days, and 4 oz for 1 day.  Then we took a 3 day break.  We picked up with 4 oz for 1 day and 7-8 oz for 2 days.  The most important difference for us was the break.  E’s most recent reactions have come following a couple of days of not eating the food.  There isn’t much real data about the idea of a break, though it is mentioned in one article (#6 on the FPIES articles page).  From what I can gather, the idea is that there is sometimes a less intense, chronic reaction that may not be clearly identified, mostly because it’s all internal.  When you remove the protein for a couple of days, the body starts to get back to normal, but “remembers” the protein.  Then when it is sees the protein again it freaks out and you have an acute reaction that can’t be missed (i.e, projectile vomit).  I’ll admit that I’ve never noticed any chronic symptoms, like weird poops or an unhappy tummy leading up to the reactions, but I do know that he had egg, coconut, and crab multiple times and seemed to be passing them.  Then, after a break from the food – boom – vomit everywhere.  So now we always incorporate a break into our trials.  These last couple of reactions were on days 9-11.  So I aim to break after day 8 or 9.

Also, it’s helpful to remember that we never had a clear acute reaction to diary.

You can read the whole long story in a previous post.  The short version is that we had no idea why E was vomiting all the time and we were essentially poisoning him with milky bottles every two hours.  So he was always throwing up but he was always ingesting the allergen.  There were no food trials at that time and there was no waiting for 4 hours after he ate to see what happened.  It was a mess, quite literally – vomit everywhere, all the time.

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Notice the vomit stains and the formal bedtime attire because all other options were in the laundry.

So here we were.  23 months since his last exposure to milk.  We really didn’t know what to expect.  Thank goodness the skin tests were accurate and there was clearly not an IgE reaction.  That allowed me to breathe at least a little sigh of relief.

For FPIES, the 23 months without dairy exposure could have led to a couple of different outcomes. On the one hand, it should be long enough for his system to “forget” about the allergen and there could be no reaction ever again.  Or it could just be a long “break” and the next first exposure could be severe.  Or it could just be like a first dose of a new food.  He could slowly start to have a low-grade reaction, become more and more sensitized to the milk and then have a strong reaction at a later time (presumably after a break).

So we got through the first 4 hours with no vomit.  Another half-sigh of relief.  We could cross off the “long break leading to an acute reaction” scenario.  But we still weren’t in the clear.

So we moved on to day 2, 3, 4 etc.  I was still holding my breath.  There were a couple of things that worried me.  The biggest one was an unusual wave of fatigue/lethargy that would hit my rambunctious little boy at exactly 2.5 hours after his dose of milk.  To say that E is active and has a lot of energy may be the understatement of the century.  I swear he siphons his energy right from me.  He never seems to tire and can run for what seems like hours.  He absolutely loves being outside and starts campaigning to go out to play before I pick him up out of the crib in the morning.  So for the first couple of days as we approached, what I like to refer to as the “vomit window,” 2-3 hours after he has his dose of a possible allergen, the window of time during which we are most likely to see vomit, I have taken him outside to play.  (I’m no dummy, we finally just replaced the carpet that he stained with vomit as an infant – being outside was beneficial to everyone).  Each day I would open the door and he would take off. He would run and push his cars and shovel leaves.  One day we were even lucky enough to had a little bit of snow to play in.  He had a ball.  But then he would suddenly stop and want to go in.  One day he just laid down on the sidewalk.  One day he laid down in the middle of a busy play area, with other kids running around and over him. One day he threw his hands in the air and requested that he be carried inside.   Then he would spend the next half an hour to an hour laying on the couch with me or my husband.  On one occasion I thought he seemed a little limp, like  rag doll, as I took his coat off.  This behavior was concerning.  But he was fine otherwise, just kind of lethargic.  He wouldn’t complain about anything but he wouldn’t want to do anything.  After a little while he would jump up and seem to return to normal.  This was not typical E behavior.  In fact it was outside of the norm enough to set off red flags for both Jonathan and I, which is a big deal.  Jonathan is usually my crazy-meter.  His job during a trial is to remind me to keep things in perspective and to prevent me from getting worked up over nonspecific mild anomalies that I am starting to call symptoms.  But even he was concerned about this weird lethargy.

“Vomit Window” Fun!

So we were pretty much convinced that we were experiencing a slow, chronic reaction that we couldn’t quite pinpoint.  There were some other things, too.  A couple loose stools, but nothing scary and nothing consistent.  Maybe a little more gas than usual.  And then there was the rejection of the milk.  As early as the third or fourth day he started putting up a fight about drinking the milk.  He didn’t want it. When we convinced him to take a sip he made faces and sounds to let us know that he was not enjoying it (he may have a future in the theater).  I would hand him the cup and he would push it away.  We basically had to lure him into a TV trance and slip the straw into his mouth so that he would drink it without realizing it.  (Nothing like encouraging mindless eating in an impressionable child).  Thanks to Curious George we were able to get each day’s dose into him.  The rejection is something that we noticed with other fails, especially egg and coconut.  On the days that those foods led to acute reactions, he refused to eat them and I forced him (and later regretted it).  So this was another big red flag.

But still no vomit.  The doses continued to increase.  I continued to bite off what was left of my fingernails…

Finally we went into the 3 day break this past Tuesday, Wednesday, and Thursday.  E went to his grandparents’ house and I got some school work done.  It was an attempt at being a little more normal and it felt good!  But the whole time I felt like Friday was hanging over my head.  I just knew that Friday, the day after the break, day 9, would be biggest test since day 1.  But I also felt like if we got through Friday without vomit, we were probably in the clear.

So Friday morning I gave him his cup of milk.  He took it from my hand and took about 3 big sips with no indication that he hated it.  I couldn’t believe it.  After that it was a little trickier.  I handed it back to him and he refused.  I waited a bit, tried again and he refused.  I put the cup down and walked away.  He picked it up and drank some!  The little bugger would only drink the milk when I wasn’t looking.  He was totally playing me!  When I turned away he drank it as though he’d been doing it his whole life!

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Enjoying milk when he thinks mommy isn’t looking.

Then we waited.  I again arranged to be outside during the “vomit window.”  He was running and having a blast.  Then, about 2.5 hours after his 4 oz dose, he threw his hands in the air and wanted to be carried home (he had just run to the corner of our street with no indication that there was anything wrong).  I picked him up and carried him.  I noticed some funny faces and perhaps some reflux, he seemed to be swallowing down something that tasted bad.  I asked if he was ok and he responded “uh huh” (his typical response).  We went inside and he was quiet for a little while but then returned to normal.  Reflux is a little concerning but I didn’t see any vomit.  Definitely nothing projectile.  Later that day he had a little bit of a rash on his abdomen, but not eczema, and it didn’t seem to bother him.

I still wasn’t ready to breathe a sigh of relief.  Not yet.

On Saturday morning I gave him 8 oz of milk in his Cars cup.  I told him he had to drink at least down to Lightening McQueen’s headlights, which was at least 4 oz.  He drank about 7.5 oz with no argument and no drama.  He had a similar refluxy experience at 2.5 hours but he was in the car seat so it was hard to tell if he was lethargic too.  The rash was still there but hadn’t gotten worse.  Poops seemed normal…

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This morning, Sunday, I gave him another 8 oz cup.  He tried to negotiate with his dad to stop drinking when after he got down to the headlights, but Jonathan was able to get him to drink almost all of it again.  We were out and about again today during the window, but I didn’t even notice a bout of reflux today.  And the rash is gone.  He did have a yucky, loose, smelly poop at an unusual time.  But only the one and nothing else out of the ordinary.  Today was day 11.  We usually give E 12 doses before we call it a pass but he’s never reacted after the 11th dose…

I have no real concrete reason to believe that milk is a fail.

But I’m still holding my breath. All of these things make me not positive it’s a pass.

I know that FPIES isn’t always as pass/fail as we’d like it to be.  But we’ve been really lucky.  Our fails have always been really obvious.  We always get vomit.  We never give much credence to nonspecific symptoms that might be due to the food.  And we usually have a happy, healthy, weight-gaining boy.  Other parents are not so lucky.  They deal with all kinds of weird symptoms and have to constantly ask themselves if it’s related to what their child is eating.  They remove foods and hope it improves (sometimes it does and sometimes it doesn’t).  Maybe this is our initiation into a the elusive “chronic FPIES symptoms.”  Or maybe its just a pass and I am being a crazy hypochonriacal helicopter mom.

But we are going to go ahead and call dairy a pass.  For now.  We aren’t going to quite start giving him dairy willy-nilly yet.  But we are going to start increasing the amount he gets in a controlled, trial-like way.  We’ll keep an eye on it.  But we won’t completely and totally have to avoid it anymore.

Our sense of uneasiness is also complicated by the fact that tomorrow we will start all over again.  We have another challenge scheduled for tomorrow.  Rice.  It’s not ideal.  I’d like more time to explore dairy, but it is what it is.  We will move on to rice trials in the mornings and perhaps I will be brave enough to keep up the dairy in the afternoon, we’ll see.

So, dairy is a pass, we think.  We are pretty sure.  But we aren’t quite celebrating yet.  Something just doesn’t feel right and if there’s one thing that I’ve learned about dealing with FPIES, it’s to always trust my gut…

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E is practicing giving milk the “thumbs up” (still not quite there, though)

Any advice? Have any other FPIES parents seen this kind of pattern? Was it a reaction? Was it just adjusting to a new food? Am I just a crazy person? Is it bad to hold your breath for 2 weeks straight?