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.

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A Season of Celebrations

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I am ready to celebrate! Sunday we declared rice an official pass and yesterday E passed the initial oat challenge!!  We still have to finish out the oat trial, but things are looking good!

If you recall, I was not looking forward to this December.  In fact, I was dreading it.  I was so focused on all of the challenges that we were set to face that I didn’t even think about all of the things that we would have to celebrate this season.  I was so caught up in the stress and negative aspects of FPIES that I totally forgot that I was going to get to spend Christmastime with a two-year-old!  Without knowing it, my own little elf has reminded me of what this time of year is all about.  So, in contrast to the post I wrote about a month ago, I want to share with you all of the fun that we’ve been having this holiday season, despite living with FPIES and enduring serial food trials.

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We kicked off the season with a dairy challenge the Monday before Thanksgiving. I know, how festive!  Despite the stress and uncertainty of the trial, we managed to have a wonderful Thanksgiving.  Jonathan’s sister and her husband hosted a beautiful family dinner.  They graciously offered to make it safe for E but we decided to err on the side of caution.  The possibility of mistakes or cross-contact was too high, especially during the dairy trail, so I brought a safe dinner for E.  It wasn’t necessarily a traditional Thanksgiving meal but he gobbled up his turkey meatball, mashed potatoes, applesauce, green beans, and corn bread.  He also ate in a highchair so that he was a little more removed from the table (and allergens).  I don’t think he even noticed that he wasn’t at the table or that his dinner was different.  He loved eating with the whole family, especially his cousins!

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After Thanksgiving, the countdown to Christmas began!  For as long as I can remember my mom has always made a paper chain to help us countdown to Christmas.  I was so excited to make one for E this year because he can finally understand what it signifies.   Every night before he goes to bed, he rips a link off and declares that we are “one day closer Christmas and Santa Claus will be here.”  It’s the cutest thing ever!

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After two weeks of trialling dairy we aren’t totally sure it’s safe and decided to retrial it after things settle down in January.  It’s disappointing to spend another holiday dairy-free but we are becoming pros now at finding substitutes and modifying traditions.  E is in love with the idea of “kissmiss coosies.”  In addition to the safe chocolate chip cookies, we have been experimenting with recipes for shortbread cookies (which are naturally egg-free!).  Baking and decorating the cookies is almost as fun as eating them!

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Next up was the rice challenge, which went so well we were able to combine it with a visit to see Santa Claus.  E has been so excited by the whole idea of Santa Claus and talks about him every day.  I think he was a little starstruck when he first met the jolly old elf in person, but managed to file his request for his “own kitchen” (which is all he’s been talking about!).  He was also lucky enough to get a private visit from Santa Claus who arrived at his Grandi and Grandad’s house via firetruck!  The icing on the (allergen-free) cake was definitely the email that he received from Santa last night.  Santa sent a video that announced that E had made it to the nice list!  We have watched this video about 10 times already and each time E gets more and more excited!

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We’ve also been spending time watching some classic Christmas TV specials and, of course, choosing and trimming our Christmas tree.

E’s excitement about Christmas and Santa Claus has absolutely been contagious.  I think actually at this point I might be more excited for the big day than he is.  I can’t remember the last time I was looking this much forward to Christmas!  Seriously, I’m giddy.

When you are in throes of FPIES, or any other stressor, it’s hard to step back and remember that this is not the only thing going on in your life.  The holidays are full of parties that center around food (food that is full of dairy, egg, and shellfish).  So, having a child with food allergies can be stressful.  It means more planning.  It means more work.  It means constant vigilance.  But it also means that we will spend lots of time surrounded by people we love and who love us.  It means that E will get to hang out with his family, many of whom we don’t see enough.  Sure, some traditions have to be tweaked, but E is two! He doesn’t know that there are cookies that we’ll omit from our baking menu this year.  He doesn’t care that he can’t partake in my dad’s famous Christmas Eve shrimp scampi or Aunt Jean’s lasagna.  He’s never had those things and would probably even prefer a peanut butter and jelly sandwich.  I’m definitely guilty of mourning the things he can’t do and I love that he is always ready to remind me of all that he can do and what’s important to him, and what’s really important about the holidays (hint: it’s actually not the food).

I hope that the joy of our Christmas season can bring hope to those of you that are in the thick of life with FPIES or any other challenge.  We’ve had so much fun watching E getting excited for Christmas and enjoying all that comes with this time of year that we’ve been able to shift our focus away from FPIES (even though we were in the middle of some pretty serious food trials).  The opportunity to take a step back and remember that there is so much more to life than FPIES has been a bit of a Christmas gift (and lesson) to me.

Thank you for celebrating our passes and Christmastime with us.  I wish you the joy and excitement of a two year old on Christmas and a happy and healthy new year full of your own celebrations!

5

Rocking the Rice Trial!

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E’s rice challenge on Monday was great! This was our fourth challenge overall and the second one in the past month so we are old pros at this point. E knew just what to do.  He humored the nurse and allowed her to take his vitals and ran to the scale for his weight (I wish I loved the scale so much).  Then he ran to find his favorite toys in the playroom.  We were spreading the toys all over the floor before we even saw the doctor 🙂

He inhaled his first dose of rice flour (1/4 tsp mixed in applesauce) and could barely wait the 20 minutes until his next dose (1/2 teaspoon mixed in applesauce). The rest of the day was gloriously boring. There was no sign of any problem or discomfort and we were out of there by 1:00!

E was such a good boy that we decided to embark on our annual trip downtown to see the Christmas Light Show and Santa Claus at Macy’s. He was very excited to see Santa and ask him for his “own kitchen” following a recent disagreement with mommy about his presence in her kitchen. The nostalgia of the light show was totally lost on him but he loved meeting Santa Claus. He ran right up to him and gave him a hug. Then he got shy and uncertain but, with some encouragement, he submitted his request and posed for an obligatory picture with no tears at all.

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Jonathan and I were in awe of what an amazing little boy we have. He is so flexible and brave! We are so lucky.

Mommy and Daddy left the hospital on Monday in a totally different mood than two weeks prior when we left the dairy challenge. The rice challenge really felt like a pass. We weren’t hesitant to call it that and we weren’t just waiting for the other shoe to drop. We really felt like things were good.

That definitely called for a celebration so we decided to take E to one of our favorite local restaurants. We still brought all of his food (we weren’t ready to get crazy) and had a great time enjoying wonderful meals (and a celebratory beverage for mom and dad). Again, we couldn’t believe that after a day that was totally out of he norm, with no real schedule, and a 20 minute nap he was still incredibly well-behaved at the restaurant. Perhaps he will get to “go out eat” more often.

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The way we felt leaving the rice challenge – like a weight had been lifted – really put our feelings about the dairy trial in perspective. Dairy still doesn’t feel like a pass. We can’t explain it, there aren’t any concrete reaction symptoms, but it doesn’t feel right. So we are going to put dairy on hold for now.  Dairy did come off the official allergen list in E’s medical record and we are less likely to body check a toddler waving around a goldfish cracker, but we aren’t going to be offering him cheesecake any time soon. We’ll retrial it systematically in January. Right now we’ll focus on rice and oat (which we start in a week and a half) and enjoying Christmas (even though it will still be dairy-free).

So we are in the middle of the at-home portion of the rice trial. There was a different attending allergist at this trial than the last and the trial protocol we were sent home with was very different from the one we got for dairy.  We were told to give E 1 tsp of rice for two days, 2 tsp for 2 days and then 1 tbsp for a day. The difference between this protocol (5 days) and the dairy protocol (12 days) makes me feel not at all guilty about changing it up to conform to our trial protocol. So our plan is (after the 3/4 tsp in the hospital on the first day) 1 tsp for one day, 2 tsp for two days, 1 tbsp for two days, 2 tbsp for 2 days, 3 day break, 2 tbsp for one day, 2-4 tbsp for two days. We are using rice baby cereal mixed with applesauce because E loves applesauce. We are hoping for less drama and fewer games than the milk trial.

So today was the fourth day and he’s doing great. We have had some weird sleep issues the past two nights but they occurred at different amounts of time after his rice doses (it was about 12 hours after his dose of rice on the first night but about 21 hours after his dose the next night).  We can’t really be sure what this is all about. He hasn’t been sleeping well for a couple of weeks, since having a bad cold, so it might be nothing. We’ll just file it away and see if any real pattern develops. Otherwise, there hasn’t been anything to concern us. No lethargy, no weird poops, nothing. So we are very hopeful that this will be an easy and clear-cut pass. Only time will tell…

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?

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Dairy Challenge Day 2 – So Far, So Good…

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I’m pleased to report that yesterday’s hospital-based milk challenge was uneventful!!

Everything went as planned and maybe even better than I could have hoped.  People are often asking about what the challenge entails so I’ll give a brief overview of our day (I’ll do my best to make to make this post less boring than the actual day).

Once we were registered and assigned to a room and nurse, E’s height, weight, blood pressure and pulse ox were measured and the nurse listened to his lungs.  This was actually a little nerve-wracking for me because E had a pretty bad cold last week and still had a little bit of congestion and a cough.  His pulse ox was a little low and his lungs weren’t completely clear.  The nurse said that she didn’t know if the doctor would move forward with the challenge.  Thankfully, the doctor hesitantly agreed to do the challenge since it was an FPIES protocol and there wasn’t really any concern that the food would cause respiratory distress (like there would be if it was an IgE trial).

Once E was cleared to move on, it was time to have the first dose.  This was E’s first trial without an IV.  Before his soy and barley challenges the IV team placed an IV so that they were ready in case the food caused excessive vomiting that resulted in dehydration that required IV fluids.  Placing the IV was time-consuming (we had to wait for the team to arrive and then actually get it placed and secured) and traumatic (just imagine being a year old with tiny veins and being held down while someone sticks a giant needle in your arm multiple times trying to find the small veins).  I always found the IV reassuring but E never needed it, even when he failed the soy challenge he recovered quickly and without intervention.  So his allergist said that he didn’t need it this time.  Without the IV the challenge got off to a much better start!

He got his first dose – 10 ml of lactose-free milk – at 8:50 am.  He sucked it right down and seemed to really enjoy it.  About 20 minutes later the nurse rechecked his vitals and his skin and he was given his second dose – 20 ml of lactose-free milk – at 9:15 am.

IMG_3598 First taste of milk!

Then we waited.  E watched some Curious George, played in the playroom and enjoyed the new car we bought for him.  An hour after his second dose he was able to eat and then he went back to playing.  He was so incredibly well-behaved.  He had a great time enjoying the different toys in the playroom and playing with the other kids who were also having challenges.  During his previous challenges his vitals were rechecked every 20-30 minutes.  This time the nurse basically just kept an eye on him to make sure he seemed ok, without getting any actual data.

I knew the 2-3 hour mark was E’s typical reaction window.  So at about 11:00 I convinced him to have some quiet time, laying on my lap while watching more Curious George (he has a bit of an obsession).  Several times during the next hour I caught myself holding my breath, but E seemed to be doing ok.  At about 11:30 he got squirmy and at one point he flinched as though he had a really bad stomach cramp.  I prepared for the vomit but it never came.  I asked him if he was ok and he gave me his standard “uh-huh.”  I don’t know if he had some discomfort in his belly or if I was just being crazy and hyper-viligant.  He didn’t seem quite right but still no vomit.

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Cuddling during E’s typical reaction window – no vomit!

By noon he wanted to get back to the playroom, where he spent most of the rest of the time we were there, taking occasional breaks for snacks.  He had one bowel movement before we left that seemed a little unusual – slightly runny. It was different enough to make me notice but not enough to make me overly concerned.

At 1:15 E was discharged with instructions to continue the trial at home for the next 12 days (1 oz of milk for 3 days, 2 oz the next 3 days, 3 oz the next 3 days and then 4-8 oz the next three days).  We were told to continue to watch him closely for the rest of the day and to call the on-call allergist if there were any concerns.

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Someone was very happy that he didn’t react to milk!

I’m calling milk a “preliminary pass.”  It’s a really good sign that he didn’t have a full acute reaction.  And he didn’t have any signs of an IgE reaction.  But there were those couple of things that made me wonder if something was going on that we couldn’t see.  I’m not going to celebrate until we are through the next two weeks.

The rest of the day was pretty normal.  E was sound asleep before we left the hospital’s parking garage, but it was nap time so that wasn’t surprising.  He was a little hyper last night, but that’s not too unusual.  He slept well and woke up at about his normal time this morning.

At 7:30 this morning I have him an ounce of lactose-free milk.  He didn’t seem to enjoy it as much today but drank it all anyway.  Then we went about our day.  Ok, I’ll admit, I slightly manipulated our day so that we were home and playing outside during the time period with the highest likelihood of vomit (we just bought a new carpet to replace the one that was destroyed by vomit when E was a baby).  He generally seemed to be fine.  The only odd thing that happened was that while he was playing outside at one point he just laid down on the sidewalk.  He’s usually incredibly active and has more energy than I could ever hope to have, so this was really weird, but not really indicative of the reaction.  He was also very whiney during our trip to the grocery store this morning.  But, honestly, he was just acting out the way I felt about going to the grocery store today.  We’ve had a crazy couple of weeks with multiple colds, an unexpected house hunting blitz, and a food challenge.  I think we are all pretty exhausted.

We have two days of drinking milk without incident.  This is huge!  E may have actually outgrown his dairy allergy!  I’m still afraid to get too excited, but I’m proceeding with cautious optimism.  I do think it’s safe to say that he does not have an IgE milk allergy! It seems that our epi-pen carrying days are over! That is super-exciting and a huge relief!  FPIES sucks but it isn’t nearly as scary as an IgE allergy.

By the way, we were also a little relieved that the offer we put in on a house was rejected in favor of a higher offer.  It was a great house but I’m really glad that I don’t have to spend the next two months packing on top of everything else we have going on.

Thank you all for your thoughts and prayers.  Please keep us in your thoughts as we continue our at home trial.  I’ll keep you posted.

6

Food Trials: Variations on a Theme

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We’ve been living with FPIES for almost two years, pretty much my son’s entire life. During that time I’ve gotten a little more comfortable with many things, such as leaving the house without showering, sticking my finger in a potentially full diaper, and conducting food trials.

When it first became clear to me that we needed to be more systematic about giving E new food, I scoured the literature and the internet trying to find the best way to introduce a new food to a little boy with a great appetite and a growing number of allergies.  I found pretty much nothing.  The literature in the field is way to new to address such a specific aspect of FPIES with the detail that I was seeking. I quickly learned that every FPIES parent has their own process for food trials and that every FPIES kiddo is so different that individualized approaches are really best.  One thing that I didn’t realize at the time was that even within the same child the approach to food trials changes over time.  As you learn more about the types of triggers that your chid has and as you come to accept FPIES as something that you and your family is living with, not against, your approach might change.  Our method of trying new foods has certainly evolved since we learned E had food allergies. I wanted to share some of this process and some of the variations that we use to demonstrate the truly experimental and ever-changing nature of the FPIES food trial.  Also, to make a case for the fact that there is no right or wrong way to do it.

First, I think it’s important to remember the purpose of the food trial.  I think we get lost in the details and start to fetishize the trial so much that we forget why we do it and actually give it more power than it deserves.  The purpose of the food trial is to see if a child is allergic to a particular food.  The trial itself doesn’t  determine whether or not there is an allergy. It’s just the “test” to find out.  It’s the “scratch test of FPIES.” This might seem obvious but it’s so easily forgotten. I think all FPIES parents (myself included) fall into a trap of believing that our kids’ chances of passing are better if we do a trial “the right way.”  That just isn’t the case. If your child is allergic to the food, he will react to it. Nothing you do makes him more or less allergic, to a point. (That being said, there is a school of thought that suggests you might have a better chance of passing if you wait longer to try certain foods or avoid a food for a while before trialling again.  I’m really talking about the step after you decided that your child is ready to try a food).  

Actually, the point of a food trial is to cause a reaction. During a trial, you should do all that you can to be sure that if your child is allergic to a food you’ll know it. You want to see the reaction when you are ready for it and at a low dose, so that (theoretically) the reaction is as predictable and manageable as possible. You also want to have a reaction during the period of time when there is only one new food, so you know what caused the reaction.

The thing that is most important about food trials is your child’s history – when they typically react (the amount of time after the food is given and the number of exposures that are typically needed before you see a reaction), how they react (what are the symptoms, how severe are they), and what types of foods your child reacts to.  It’s also important to be realistic about your schedule and the resources you have available.  Finally, you have to be honest with yourself about how important it is for you to be able to definitively say a food is safe (or not safe).

It took us a long time to figure out the answers to all of these questions and, therefore, the best way to introduce E to new foods.  We eventually developed the strict 15-day food trial protocol that I wrote about a couple of weeks ago.  During this process we start with a low dose, increasing it slowly over about 5 days.  We then give an appropriate serving size for another 4 days.  After about 9 days of exposure to the food we take a 3 day break.  Then we reintroduce the food for about 4 more days, the last two of which are at “overdose” amounts.  During this strict trial protocol we are very careful to not introduce any other new foods.  I truly believe this is the best way to get the cleanest data.  If E is allergic to a food, I am sure he will react during this trial and we will know for sure which food is the culprit.

But this protocol takes a long time.  Over two weeks!  That means that if we are always doing a trial with no breaks (for things like colds or recovery from a fail or holidays or mommy’s sanity), E could potentially gain 24 new foods a year.  Sure, it seems like a lot but think about all of the food that you eat in a day, and all of the ingredients in a single (normal) recipe.  Suddenly 24 isn’t so much, not to mention the fact that we are definitely going to take breaks (for my sanity if nothing else).

So, we don’t always do this strict food trial protocol (*gasp*).  It’s almost blasphemous in the FPIES world to admit that you don’t do strict food trials.  But the one known when it comes to FPIES is that all kiddos with FPIES and all FPIES families are different.  I couldn’t wake up every day with the mindset of entering into battle – it’s exhausting.  I had to find a way to work FPIES into our lives and live with it, while still keeping E safe. So I started to make some changes.

Oddly, our first “messy trials” followed E’s failed soy challenge.  After such a dramatic fail, you’d think I’d hunker down and be more careful, not less.   In a way I kind of was being more careful despite the “messiness” of my new version of food trials.  The attending allergist at the challenge suggested that we trial a food for 12 days, not the 7 we had been doing up to that point.  When I got home my mind was spinning – I was tired and stressed.  And then I panicked that the foods that we thought were safe for E might not be because we didn’t trial them long enough.  I couldn’t say for sure that every food on his safe list had been eaten at least 12 times.  In the haze of stress and uncertainty I decided that we must retrial every food that E might not have had 12 times.  At some point I had the realization that it would take weeks to get through all of the food and then we would be right we started.  I didn’t want to go backwards so I developed a new protocol for these foods that were probably safe anyway.  

I referred to these as “messy food trials” because the thing that I eliminated was the one food at a time rule.  That meant that if there was a reaction, the data it provided would be messy. If I was giving more than one food at time I wouldn’t be able to say for sure which food caused the reaction.  I essentially staggered the start of each food but had multiple 12-day trials going at the same time.  It was a lot to keep track of and I actually had to rely on my calendar to keep it all straight.  At this point we hadn’t introduced the break into our trials so that made it easier.  As you can see, last December was kind of a stressful month.

My original method for keeping track of our overlapping “messy food trials”

Once we retrialed all of our previous safe foods we went back to perfecting our strict food trial protocol.  We did that for a while, added more and more safes and went months without any reaction.  Then our allergist gave us the ok to stop doing a full food trial for fruits and vegetables!  E had passed all fruits and veggies without any problems (unless you count coconut as a fruit, which is up for debate) and she felt confident that he wasn’t going to react to any.  I didn’t feel so confident.  The food trial had become a little like my security blanket.  After this crazy process I knew E was going to be ok whenever he had the food again.  I needed that – I don’t do well with uncertainty at all.  So, much to my husband’s dismay, I ignored her and continued to trial all foods, including fruits and vegetables.  I did concede, however, that a “messy food trial” would be ok for those foods (again, because they were probably safe). I went back to all of the questions above that outline a food trial and I decided that the most important thing for us was to be able to say that E had eaten a food at least 12 times.  I decided to simplify the system and started a low-tech hashmark system on post-it notes inside our kitchen cabinets.  Every time we started a new food, I added it to list and kept track of exposures using hashmarks.  I still continued with our protocol, but was sometimes willing to overlap trials of new fruits and vegetables.  At some point we also added in the break, which I kept track of mentally.

 

Our Post-It Note System of Tracking Trials

E did great – look at all those passes (and this is only some of them)! His allergist was right! He has passed all fruits and vegetables with no problem.  E hasn’t had a reaction since his crab trail in April.  That’s 7 months!!  Is it possible that we’ve found all of his triggers?  Maybe, developing new triggers after two years old is not very common (though not unheard of).  At his last appointment with the allergist we were told that we don’t have to trial every new food anymore!  That’s a pretty crazy thing to wrap your head around.  And, again, the food trial protocol is my security blanket.

Now I trial foods on a case by case basis, using the questions at the beginning of this post as a guide.  I know that E typically reacts about 2-3 hours after he eats the trigger, usually after about 9 exposures and often after a break in the exposures.   That means 2-3 hours after a new food I am on high alert, so I usually only do new foods at breakfast and lunchtime.  Trying a new food at dinner interferes with bedtime and depending on how late dinner is,  the reaction window may be after he’s down for the night (bedtime is pretty sacred at our house so I rarely do anything that can interfere).  I continue to keep track of foods using my post-it note system.  That way I can know how many exposures he’s had and how likely a reaction is.  We are lucky because E’s reactions are typically not very severe.  He has never had to be hospitalized following a reaction and I am the first to admit that he recovers faster than me.  His crab reaction was even after an “overdose” amount and it wasn’t so bad.  So, I typically don’t worry about starting at a super-low dose anymore.   The thing that is the hardest to let go of is the belief that the importance of all foods is equal.  For example, if I use thyme in one recipe, all other ingredients in the recipe are safe, and E does not have any other herb (or vegetable for that matter) triggers, it isn’t really that important to know for sure that thyme is safe.  I might just go ahead and serve the recipe without doing an all out thyme trial. I’ve also started trialling entire recipes.  For instance, if there are several new foods in one recipe, I’ll go ahead and give the entire recipe and track it as though it were one food.  I also don’t worry about getting through a whole trial at once.  I’ll give E the food when we have it until it runs out and then just give it to him again next time I make it, which might be several weeks (or longer) later.  We eat chili a lot in the winter but it still might be spring before he has all 12 exposures.

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My chili recipe has several new but probably safe ingredients so I am “trialling” the whole recipe.

Of course, I also allow myself to be ok with a “messy” reaction.  This method will not give perfectly clean data.  If there is a reaction I might not be able to tell you for sure what caused it.  Then I’ll have to decide if I want just avoid all of the new foods that it can possibly be or if I want to go back and do more systematic trials.  Luckily, we haven’t had to deal with that yet.   Also, when we go back to retry our known triggers you better believe it will be the strictest version of our strict trial protocol!

It was really strange at first but I love not being afraid of every new food! I now read ingredient lists looking only for our triggers (there are 7 so it’s still not an easy task).  If there is a new food I just proceed with caution, but I proceed, something that I didn’t do a couple of months ago.

IMG_3614I love seeing this boy with a full plate of food! (So much that he even required 2 utensils!)

Wow, this turned into a long post.  I hope it’s helpful to see how food trials have changed for our family and I hope some of our process might give you some things to think about as you develop your own food trial protocols.  Please know that this is a process that worked for us at this point in our FPIES journey.  We can relax now that we have a handle on what E reacts to and how he reacts.  He also has a ton of safe foods so there isn’t as much importance placed on each trial.  Just remember to do what works for your family and embrace it – no matter how messy it is.  If you are early in the FPIES process this probably sounds crazy to you!  You’ll get to this point eventually, just hang in there and do what works for you one day at time.

0

Post-Neocate News

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More than a month ago I posted about what was almost our last full day of Neocate.  That’s right – almost.   Nothing is ever easy and straightforward, right?  Here is the update…

Right after I wrote about my mixed feelings about giving up Neocate I got sick.  I had an awful head cold and being the selfless person that I am, I was kind enough to share this cold with E.  It was a weird cold, it came on pretty slowly but then hit me really hard.  Luckily the worst of it was over a weekend and my wonderful husband allowed me some sick time so that I was able to recover and he focused on keeping E as happy as possible.  It’s really hard for a rambunctious little boy to be sick and tired.  Jonathan is a saint and took great care of us!

One of the side effect of E’s cold is that he wanted his comfort food – Neocate.

Let me back up a bit.  I have to admit that I didn’t really have a plan for weaning him off of the Neocate.  I had no idea how it would go, but kind of assumed that he would be happy to drink almond milk or hemp milk and leave the formula behind. I hadn’t really decided how I was going to substitute the Neocate so I started to give E the choice of what he would drink in his cup.  He drinks 3 cups a day and they had always been Neocate.

So  here’s how it went:

Me:  ” Do you want Almond Milk or Hemp Milk in your cup?”

E: “mesin cup”

Me: “Almond Milk?”

E: “NO, mesin cup”

Me: “Hemp milk”

E: “NO, MESIN CUP”

Me: “you want your regular cup?”

E: “uh huh”

And there you have it.  I have no idea what he was actually trying to say.  E is still perfecting the whole talking thing and we are currently at a stage where context clues are critical.  It sounded kind of like “medicine cup,” which makes sense because Neocate is kind of like a medicine.  But we’ve never called it a medicine.  In fact, Jonathan and I actually had conversations about what to call his Neocate.  We didn’t want to call it “milk,” because it wasn’t milk and we didn’t want him to think it was ok to drink milk.  We also didn’t want to call it “formula” or “Neocate” because it sounded too clinical.  So we settled on just calling it his “cup.”   Regardless of what we called it, he made it perfectly clear to me that he wanted his Neocate cup.  We had this conversation three times a day for about a week.  If I tried to slip him almond milk or hemp milk, he made a face, handed it back to me, and reminded me that he wanted his “mesin cup.”

I decided not to fight it for several reasons.  One, he was sick.  I know that when I am sick I like to indulge in comfort foods and don’t want to have to explain myself.  Two, I was sick and I didn’t really want to, or have the energy to, fight with him.  I knew that we had enough Neocate stockpiled to last a couple more weeks and so there was no reason to push the issue while we both had low resources.  Third, and most importantly, I didn’t want the transition to be traumatic.  I didn’t want him to view this as an him vs. me issue.  I didn’t want him to have negative feelings about the other types of milk or just resist them because I was pushing so hard.  So I let it go for about a week.  I still asked each time what he wanted to drink and still presented two options: almond milk and hemp milk.  And he continued to request the old favorite.

Once we were both feeling better I started to push a little harder.  I actually wanted to do a trial of shelf stable almond milk. Blue Diamond makes individual servings of the shelf stable almond milk, which I wanted to be able to keep on hand for when we are out of the house or in a pinch but  E had only ever had the refrigerated version.  The shelf stable version had at least one different ingredient (tapioca starch) and because I wanted to know this safe to drink when we were away from home, I thought a full food trial was in order.   I was feeling a little brave, so I did make one change to our normal food trial protocol and decided to give him a full serving starting on day one.

I started to replace his morning cup with the shelf stable almond milk.  The first day of the trial I didn’t give him a choice.  I just handed him a cup of almond milk in the morning.  He tried to resist but I explained to him that we had to try a new almond milk so he had to drink that cup in the morning and he could have his regular cup later in the day.  For the first couple of days we did our almond or hemp milk dance for the next two cups.  He ended up getting Neocate for both.

Then I started to bargain with him a little bit and we compromised on one cup of Neocate a day.  He had to have his one cup of shelf-stable almond milk, then he got a cup of hemp milk, and then he could have one cup of Neocate.  He could choose when he had the Neocate but was reminded that he was only getting one.

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Finally we had a breakthrough!  One day he had his shelf-stable almond milk in the morning.  Then after his nap he chose hemp milk.  At bedtime I asked him if he wanted almond milk or hemp milk and he said “mesin cup.”  I said, “how about if we do another cup of almond milk or hemp milk?”  He thought about it and said “ummm, almond milk.”  I ran to kitchen and poured the almond milk before he could change his mind!  He drank it with no complaints!
The next night we went to my mom’s for dinner and I only took hemp milk, so he didn’t get a choice, but he didn’t complain and he drank it all!

That was a couple of weeks ago, and we haven’t had a cup of Neocate since. Three times a day I give E the choice between hemp milk and almond milk and he usually chooses one or the other. Sometimes he chooses neither but he hasn’t asked for his “mesin cup” since. It’s a little weird to not push his cups on him. The Neocate used to be the only way I knew he was getting the nutrients he needed, so there were days when I practically forced him to drink his cups. Now the cups are just extras. We offer them to fill the cup void and to help boost his calcium intake but his diet is complete and varied enough that he doesn’t need it. It’s crazy that I still feel a twinge of anxiety when he refuses a cup, but that goes away when the end of the day arrives and there are far fewer dishes 🙂

Goodbye Neocate!

So, it looks like we are actually finished with Neocate.  After this long process it is less bittersweet and much more sweet.  Part of me still mourns the loss of my little baby but I am so proud of the little boy he is becoming!

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Oh, and we are WEEKS away from our dairy challenge! So this may all change again…

2

A Breath of Fresh Air and Summer Sunshine

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Since E was born, I have been immersed in FPIES, in one way or another.  Early on, before he was even diagnosed, it was a literal immersion – I can show you the vomit stains on all of our clothes (and bibs, blankets, the carpet, etc).  But after he was diagnosed and we started to get a handle on this crazy syndrome, the immersion became more intellectual.  I sought out as much information as I could to help me to understand FPIES and provide my son the best, most normal life possible.  I read journal articles.  I joined Facebook support groups.  I bought books.  I started a blog.

I became immersed in FPIES.  I thought about it constantly.  I worried about it, I planned around it, I conquered it.  I whined about it, I cried about it, I yelled about it, I celebrated our victories over it. And I was exhausted by it.

One Sunday this past June I was so tired that I was sure I was coming down with something.  My wonderful husband gave me a day off and I slept.  It was glorious – and a necessity.  I needed to nip any impending illness right in the bud because I’m pretty sure caring for a toddler while you are sick is one of the circles of Hell.  But I never got sick.  At first I was confused and then it occurred to me that I was just very, very tired.

Really it was no wonder I was so tired when I looked at the week a little more closely.   On top of the typical daily work of feeding, dressing, and chasing my very energetic son, something that all parents of toddlers do, I had several FPIES-related stressors and tasks.  There was a craft play date scheduled for Friday.  That meant that I had a week to confirm that the art supplies we were using were safe and/or procure alternative supplies, which also had to be confirmed to be safe.  This required calling and emailing the play date organizer and two different art supply companies and praying that the safe supplies would arrive on time.  We also had a family picnic over the weekend.  This required a menu of safe foods for E and a substitute to the candy bag, a centerpiece of the event.  To ensure that E would be happy and not left out, I had to find non-food treats that would be even better than candy.  Luckily, E hasn’t really had much candy (and consequently has no idea what he’s missing) and I am an Amazon Prime member, two things that I am grateful for at least once week.  So I found and ordered some “treats” but still decided to make a batch of safe cookies.  Add in a customer service phone call to confirm that there were no allergens hidden in “natural flavors” of ketchup (there were, by the way) and a call to refill our supply of Neocate (E’s hypoallergenic formula).  Oh, and we were in the middle of a food trial, which means I was on edge and watching every breath E took and constantly counting the minutes since he ate the food and trying to anticipate where we might be if he reacted and doing my best make sure we were at home.  These current food trial preoccupations were compounded by weighing the pros and cons of trying various new foods and mapping out the timing of the next food trial.  And when I took a “break” from all of this and tried to connect with the rest of the world, my Facebook newsfeed was full of posts from other FPIES parents struggling with their own stressors and issues and questions. I had some answers and opinions and experiences and I so desperately wanted to help to prevent someone else from wondering about something that we had already figured out.  And then I was researching and writing a blog post and had ideas swirling around my head for several other  posts that I wanted to write.  And I wondered why I was tired…

At some point it occurred to me that I was not just immersed in FPIES, I was drowning in it.  I needed to come up for air and quick or I was going to drive myself crazy and probably take the people I love with me.

So I took a break.  Kind of.  You can’t really just take a break from FPIES.  Food is pretty important – your body needs it to grow and thrive and it’s also a social staple of our culture.  There were still ingredients to double-check, there were still art projects to create, there were still picnics and parties to attend.  Food trials, while incredibly stressful, are important to me.  We are lucky enough that E has many safe foods at this point and we could probably afford to take a break from the trials, but there are so many things left to try, so I view them as a worthwhile stressor and I continued to conduct them.  But I stopped engaging in some of the online support groups.  I still tried to check-in from time to time but not daily.  And I stopped blogging (though I’ll admit that I didn’t stop thinking about blogging).

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I started really focusing on being a mom to a little boy, rather than a little boy with FPIES.  E and I spent more time playing.  I embraced the opportunity to see the summer through the eyes of an almost-two-year-old boy.  We watched bees fly from flower to flower, sought out construction sites so that we could stare at the bulldozers, dump trucks, and diggers, climbed to the top of the tallest sliding boards in multiple playgrounds, went on wagon rides, jumped in puddles, ran up and down hills, picked dandelions, and played in tons of dirt! In fact, E demonstrated that it is possible to find dirt just about anywhere 🙂  We had a blast.  I honestly don’t remember the last time I enjoyed a summer this much.

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A side-effect of focusing less on FPIES, was that I also had the opportunity to focus on myself a little bit.  I joined a Fit4Mom group and started exercising almost every day! I had forgotten how much I liked to exercise and how good it made me feel.  And I made friends!  For the first time since we moved back to Pennsylvania I felt like I had a support network.  I met other women, moms, who were dealing with many of the same things as I am.  Not FPIES things, just mom things and grown-up things.  I started to feel like I have something in my life to look forward to and people who I could count on to motivate me to get and stay healthy.  These women are amazing and are so incredibly supportive and take extra steps to keep E safe.  I am so lucky!  I began getting in shape and now have some hope that I will be able to keep up with my increasingly athletic son.  I even lost weight!  Oh, and I went on a couple of dates with my husband!  I feel like I have finally reclaimed my body and my psyche.

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E loves partaking in my new exercise program too!

It was an awesome summer.

IMG_3387I’m sorry that I have been absent from the blog for a while, I just needed to catch my breath.  I needed to remember that FPIES is just a part of life.  Granted, it’s a big part that affects most other parts, but it’s still just a part.

Now I am refreshed and (slightly) more rested and I have so much to tell you!  I have tips and tricks to share with you about how we managed to enjoy ourselves and have fun at picnics and food-intense parties and on our first family vacation.  I have several new recipes to share, including a birthday cake that I am really proud of.  I’ve also continued to research and refine our food trial protocol, which I think I’m ready to put in writing.  In addition, we have a bunch of big steps on the horizon and are hoping to challenge a couple of major allergens over the next couple of months.  I hope that you’ll join us as we continue to learn about and overcome FPIES.  And I hope that you’ll understand when I take an occasional couple of weeks off to breathe a bit and just explore the world with my amazing son.

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How We Spent Food Allergy Awareness Week

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So here it is, the Friday of Food Allergy Awareness Week (FAAW), and I have to admit that I’m feeling pretty guilty about my lack of blog posts this week.  It seems like if you have a food allergy blog, you should probably spend FAAW going all out with posts full of facts and interesting tidbits about food allergies and what it’s like to live with them.  And besides the one short (but important) post from earlier this week, I feel like FU FPIES has been pretty quiet this FAAW.

I was driving home from our playdate today and feeling bad about not spending more time on the blog this week, when it occurred to me that instead of throwing a ton of facts at you all week, we have actually been living with food allergies.  E and I have had a great week.  As I reflected on what we’ve been doing while I wasn’t blogging I realized that this is what FAAW is all about.  It’s about our constant awareness of food allergies and, most importantly, it’s about not letting that awareness interfere with living life.

So, here is a recap of what E and I have been up to this FAAW:

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This year FAAW started on Mother’s Day, which was an amazing day for me!  E and I got to spend some quality morning time reading and cooking together!  I know I’ve mentioned before about how much it fills my heart to see E enjoy something that I baked for him (like chocolate chip cookies), but when he gets to cook with me, it’s even better.  I love an opportunity to make a recipe that he can actually help with and taste-test along the way (stay tuned for the recipe – it’s a good one!).  Then we had a wonderful brunch with my mother, father, great aunt, sisters and their families.  It was great to have everyone together for yummy food and a relaxing day.  E had a great time showing off and playing hard with his cousins. I feel so lucky to be his mom.

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Monday was unseasonably hot so we bought our first baby pool and E went for his first dip of the season (actually his first time ever in a baby pool).  This was definitely the cutest swimsuit at the store and I couldn’t help but notice that it was teal and grey (the FPIES awareness ribbon colors).  He loved splashing around and perfecting his frog impression.  We were also happy to share this picture as part of the FPIES Foundation’s #LoveYourFPIESselfie and #BeTheVoice campaigns for FAAW.

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We had some really wonderful playtime at the playground, the play area at the mall, Grandmom’s house, and of course at home.  I love that my little bookworm refused to put down his book even to climb to the top of the slide.

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We capped off the week with purchase of an E-sized chair for the porch and brand new snazzy sneakers.  Luckily this trip home from the shoe store was far less traumatic than when we bought his first pair of sneakers.

Sure, we did a bunch of un-photo-worthy stuff too – running errands, playing with cars and trucks, reading, coloring, and having the occasional impromptu living room dance party.  We did what we could to recognize FAAW by wearing teal and coloring FPIES awareness ribbons, but the truth is that E has no idea he has food allergies.  What  he does know is how to have a really good time and that he has two parents, a large family, and lots of friends who are always looking out for him and will do what they can to keep him safe and allow him to keep having a really good time 🙂 I spend most of my posts writing about how FPIES has made our lives difficult or scary and I try my best to share information with you whenever I can, the whole blog is really about food allergy awareness.  

Today’s post is a reminder that E is still a toddler who is living life to the fullest every day.  When you see his long list of allergens or read my posts or listen to me talk about the stress that can accompanies living with FPIES, it can be hard to believe that we can still have these wonderfully normal and fun moments in our lives.  For me allergy awareness makes these moments even more special and makes me truly treasure each one.  

When I look back at this week, I see numerous possible blog posts, as most of what we do is related to food allergies or is in some way influenced by E’s FPIES, but he is waking up from his nap and I’ve been looking forward to cuddling on the couch with him while we watch Curious George, so those posts will have to wait for another day.  I hope you are having a great week and enjoying life as much as we are, with or without food allergies.

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First Oral Food Challenge – Clarity and Confusion

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After E’s acute reactions to egg and coconut in September and October 2013, things calmed down again. We were trying and passing new foods at home and everything was going well.  We felt like we were finally getting the hang of this whole FPIES thing.

In fact, E was doing so well that at his allergist appointment in November we decided to start trying some of the foods he had been avoiding since his days of chronic FPIES. His allergist suggested we start with soy and rice. These were both on the “maybe/probably” list.  E never had a clear acute reaction to them but they were likely culprits to his chronic FPIES symptoms.  Because of the high risk of reaction to these foods, his allergist wanted them to be tried in an outpatient clinic, as an oral food challenge (as opposed to the at home food trials we had been conducting).

Oral food challenges are a controlled way to administer a food that may cause an allergic reaction.  They are conducted in a hospital (usually outpatient) or clinic setting in which there are trained healthcare providers that are prepared to respond in case there is a severe reaction and there is a need for emergency intervention.  Challenges are used for both IgE and non-IgE allergies to initially diagnose the allergies and to determine if the allergy has been outgrown.

The idea of food challenges was both exciting and terrifying. The challenges gave us an opportunity to take something off of E’s allergen list but there was also a distinct chance that we would be feeding him a food to which he would react.  The scientist in me wanted to do the test, more data is always better (even if it doesn’t support your hypothesis). The mom in me didn’t want to take any chances and would do anything to protect her son.

The scientist won and I scheduled the soy and rice challenges. To my surprise, they had an opening the next week and the next one wasn’t until February (over 2 months away). I jumped on the opportunity to get it over with, I mean get the answers quickly and scheduled the soy challenge for the Monday after Thanksgiving, despite the fact that Jonathan was going to be away on business.

Honestly we expected to pass soy.  It was never really clear that soy was an allergen.  When E was only a couple of months old we briefly switched him to a soy formula.  His chronic FPIES symptoms didn’t change during that time but he did become extremely constipated so we stopped the soy after only a couple of days, maybe a week.  To the best of our knowledge he hadn’t been exposed to soy at any other time because his allergist recommended that we avoid it just in case, given the high incidence of kids with both milk and soy FPIES as well as his positive patch test to soy.  We knew that it was possible that he could be allergic to soy but were hopeful that we had been avoiding it as a precaution only.  Besides, he passed chicken without a problem, despite the positive patch test.  Nevertheless, I wasn’t going to take E to this challenge alone.  Thankfully my wonderful sister was able to accompany me while Jonathan headed off to Tennessee to meet with a client.

The Children’s Hospital of Philadelphia (CHOP) has a great website that outlines what a food challenge is and the procedures involved for both FPIES and IgE allergies (which have slightly different protocols).  Basically, we were told to bring 32 oz of clear fluids, lunch for E, myself and my sister, a change of clothes for everyone, and toys or other distractions plus the soy milk that we were going to use for the challenge.  E was only allowed clear fluids after midnight the night before.  This caused us a little bit of stress because E didn’t really have any safe clear fluids, other than water.  We spent the weekend before the challenge scrambling to come up with some clear fluids that we could take.  He had been eating applesauce with no problem for months so we assumed he would do ok with apple juice.  He hated it.  Refused to drink it – full strength or watered down to every imaginable concentration.  Apple juice was a no-go.  On a whim, we tried Jell-O.  Also a no-go.  I’m pretty sure E is not a huge fan of sweet foods, probably because he never has them.  It’s most parents’ dream but we were a little concerned that he was going to be starving at the challenge and that water wasn’t going to cut it.  So we took the apple juice anyway, just in case.  For lunch I took the tried and true applesauce, Corn Chex, and a banana, things I knew he could safely eat and it would be a little taste of normal on a very strange day.  The change of clothes was necessary in case he failed the trail and covered us all in vomit. My sister and I both bought E some new toys to be a distraction.  We also had an iPad, with Curious George and Sesame Street available on Netflix we figured were set.

My sister spent the night before the challenge at our house because we had to be at the clinic at 7:30 am and the and it was about 45 minutes away.  That morning went like clockwork.  My sister and I got dressed, loaded up the car, and got some coffee and breakfast.  When it was time to go I picked E up from the crib (he was just starting to stir), quickly changed his diaper, put a coat on him, and carried him directly to the car.  He was somewhat awake but still quite drowsy for the car ride.  This was my plan, the more tired he was, the less likely he was to realize he was hungry and we were way off our routine.

We got to the clinic and checked in and were taken to a room with another little boy.  Thankfully, we were later moved to our own room, which was great.  The rooms had recliners, not hospital beds, which I think is preferable for a daytime visit.  It also made it seem more like a place to hang out, than a doctor’s office, which was emotionally helpful.  The chairs each had their own TV and all of necessary hospital accouterments (blood pressure cuffs, IV stands, gasses, etc.).  We met the nurse that we was assigned to us for the day and the attending allergist, whom we had never met before.  The nurse took E’s vitals.  She had some difficulty getting the blood pressure, which increased my blood pressure a bit, but everyone was so great and E was such a trooper that it wasn’t too bad.

Next we had to wait for the IV Team.  The clinic’s protocol is that all FPIES patients get an IV prior to the challenge.  This is because severe FPIES reactions sometimes result in dehydration that requires quickly administering IV fluids.  During a reaction everyone is rushed and stressed and the IV is harder to place.  It is also harder to place when blood pressure is low or the patient is dehydrated, which could occur fairly quickly during a severe reaction.  So they place the IV just in case.  Because of E’s age (he was only 15 months at the time), they called the IV Team, who are more experienced because their only job is placing IVs, they do it all day, every day.   This sounded like a great plan but it took the team a while to get to the room, and the challenge couldn’t start until they got there.  While we were waiting for the team, his nurse strapped warm packs to both of E’s arms, which helps to make the veins more accessible.  At some point it occurred to me that he hadn’t had anything to eat or drink yet and I got him to drink a little water.  He was so brave.  He was obviously confused but took it all in stride.

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Waiting for the IV team.

While we were waiting for the IV team the attending allergist asked some questions about E’s history.  I was familiar with the reputation of this allergist as he had been practicing in the health system for quite a while and I was looking forward to hearing another expert’s opinions on E’s symptoms and history.  Within minutes it was quite clear to me that he had a lot experience dealing with food allergies and had some definite opinions about how they should be treated.  I was impressed that he took a thorough history and didn’t rely only on E’s medical chart for information.  However, his questions started to seem a little like an interrogation.  He wanted to know how many days E had consumed soy and how much each day.  He was not pleased that I wasn’t able to answer these questions with certainty.  Remember, he tried the soy formula when we first started to realize there was a problem, at that point it didn’t even occur to us that everything E ingested had to be treated like a controlled experiment, we were just trying to feed our son.  The doctor also made it clear that he felt that E was too young for a challenge and that it was too soon after his last exposure to conduct a challenge (it had been about a year).

Did I mention that this was already an incredibly stressful day?  I was so nervous and the doctor was not helping.  I had already psyched myself up for the challenge and I was so afraid that after all this he was going to cancel the challenge.  My sister later informed me that she thought I might cry.  Instead, I took a deep breath and explained to the doctor that I was quite familiar with how to do a controlled study and understood the impacts of confounds.   I again told him why I didn’t do a controlled food trial for soy a year ago, months before anyone even acknowledged we were dealing with a food allergy and when I didn’t even know what FPIES was.  For good measure, I also mentioned that I was Ph.D. candidate.  Interestingly he slightly changed his tone after that.  At one point as he was explaining something to me he stopped and said, “Wait, you’re different so let me explain it this way…”  I’m not sure what that says about him and how he might treat the average patient, but it worked for me so I gave him brownie points for that one.  It allowed me to stop feeling bad about not being a good scientist a year ago and channel all of my energy toward getting my son through this day.  And trust me, I needed all the resources I could muster.

When the IV team arrived, E was placed on a stretcher and surrounded by about 5 people who’s only job was to hold him down.  I got to be one of these people, which was important to keep him calm, but heartbreaking for me. I can only imagine how scary this was.  Of course he got upset and cried through most of the procedure.  One of the nurses told him that he was almost all down, so he started crying “all done, all done.”  It was so sad.  Luckily, the IV was placed fairly easily and quickly.  Then it had to be taped up and covered up so he couldn’t play with it.  He actually ignored it the rest of the day, it was as though he forgot it was there, which is hard to believe.  I’m so lucky to have a flexible little boy!

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By now it was after 9 am (we had been at the hospital for almost 2 hours) and we were finally ready to start the challenge.  The nurse used a syringe to shoot 10 ml of soy milk directly into E’s mouth.  Thankfully, he drank it with no problem and then we waited.  After about 20 minutes his vitals were checked.  Everything looked good so he was given another 20 ml of soy milk, which is about an ounce total.  We did our best to keep him entertained with books, trucks, and TV shows. His vitals were checked every 20 minutes.  After about an hour the nurse gave E permission to eat.  He hadn’t really complained about not eating (I think he was too confused by the events of the day) but he inhaled his lunch!  After lunch it was nap time.  I held E in the reclined chair and played the lullabies we always play at nap time to try to get him to fall asleep.  It took a little longer than usually but he finally passed out for a little while.

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At about 2 hours after the last dose of soy, the doctor checked in.  I mentioned that he seemed to be doing ok and was finally sleeping.  He used that opportunity to educate me about FPIES.  He explained that if a child eats a food for 12 days without a reaction, he will not have a reaction.  He also explained that if very strict avoidance was practiced and the child had absolutely no exposure to a food for 18 months then the allergy would be outgrown.  I listened intently but recognized that I had never heard such absolutes related to FPIES (or any allergies) and realized that he wasn’t really citing any literature, but his own experience.  Of course, I had also formed my own opinions about this doctor and his approach to patients so I decided to take in all the information but not make any changes to our treatment plan.  It also made me realize that I wasn’t as up on the literature as I wish I was and made a mental note to start reading more.

About half an hour later E started to stir and the nurse came in to check his vitals.  We talked about how everything still looked good and we almost out of the window for his typical reactions.  Just as I was about to let out a little sigh of relief, E started to projectile vomit.

I think he vomited two or three times, but in rapid succession.  As upsetting as the fail and the vomiting was, it actually wasn’t as bad as the egg or coconut reactions.  At this point I kind of knew what to expect and I had a whole team of medical personnel in the room with me as well as my sister.  The nurse was amazing.  She swooped in and helped me to get E changed and stayed with my sister and E so I could get changed (E and I were both covered in vomit).  She said that E couldn’t eat or drink anything for an hour until his stomach had time to settle and we couldn’t use any of the same cups or utensils that we used after he had the soy, just in case there was a trace of soy on it.  She continued to carefully check E’s vitals every 20 minutes.  We were also told that we had to stay at the clinic for at least two and half hours after the reaction to be sure that he was ok (we had already been there for over 4 hours).  

E’s vitals remained stable and, as is typical for his reactions, he recovered faster than I did.  Within minutes he was out of the room and roaming the halls of the clinic.  Other nurses even commented about how he didn’t seem like he had just failed a challenge.  Then it started to hit me.  E really did have FPIES and it really could be serious.  I guess part of me still didn’t believe that he had FPIES.  He had always had his acute reactions at home (or in the car) and I  wondered if maybe we made a bigger deal out of them then we should have.  I really didn’t believe that he was allergic to soy, either.  Now here we are with what the doctor is calling a “very classic FPIES reaction” to soy! And all of the post-reaction protocols regarding cross contact and gut rest and checking the vitals and two and a half hours of observation.  This was real!  I’m pretty sure I was more shaken by that realization than by the actual reaction.

My general sense of fear and disbelief was not helped by the doctor’s assessment that E’s reaction meant that he must have been exposed to soy over the past year.  Now anger was officially added to the mix.  I KNOW E had not had soy since his IgE milk allergy diagnosis.  I also questioned the doctor because his theory is that you need to avoid the allergen for 18 months to become desensitized and I never claimed to have avoided soy for 18 months.  He stuck by his guns, sure that because of the severity of the reaction to such a small dose during the challenge meant that he must have been more regularly exposed.  Hmmm.  It was now quite clear to me that these “facts” were definitely unsupported theories based on his experiences and gut feelings (and not even consistent).  But I asked anyway, “Can exposure to soy oil and soy lecithin sensitize a person to soy?” We had been told that oil and lecithin didn’t contain the proteins and were safe and had not avoided them.  He danced around the question, not really providing an answer.  I obviously had a lot of research to do.

We eventually got to go home.  E was amazing, not really fazed by the craziness of the day.  I felt like I was an exhausted mess.  On the one hand we were able to clarify that his reactions were indeed FPIES reactions and that he was allergic to soy.  On the other hand I felt like I had been put through the ringer.  I didn’t know what to make of the information that the allergist had provided and frankly I was angry that he made me feel like a bad mom.  I was so grateful that my sister was with me through this crazy day but was definitely missing the strength and second opinions of my husband.  While some things were starting to become clearer, I felt even more confused about others.  I was questioning our approach to food trials and wondering if we should cancel the upcoming rice challenge.  I couldn’t wait to dive into the literature and find some real, empirically supported answers.

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Finally headed home.