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No News is Good News!

rice-pudding

Well, it has certainly been a while since my last blog post.  Today is Global FPIES Day so I figured it was a perfect time to share an update.  A lot has happened in our lives over the past 20 months or so, I’ll do my best to just give the abridged version.  The bottom line is that E is doing wonderfully!  He has officially passed trials of rice, dairy and egg!  These foods have opened up so many new foods for us and we are so excited!  The picture above is of E eating rice pudding.  This is a treasured family recipe that contains rice, dairy, and egg (and not much else) – all things that he couldn’t eat 6 months ago!  It makes my heart so happy to see him enjoying the same comfort foods that my grandmom used to make for me.  The only problem is that now I have to share 🙂

So, if that was all you wanted to know, please feel free to stop reading now.  For those of you that are in the throes of FPIES or really bored, I’ll do my best to elaborate on what has happened since my last post, how we made decisions, where we are now, and our next steps.

It Gets Easier

First, I have to tell you that life with FPIES gets easier.  It’s hard to believe and I don’t want to minimize the struggles of others, but please know that it often does get easier.  At least it did for us.  Or maybe the rest of life gets harder.  From the first minute your baby is outside of your body, all you are focused on is feeding and nourishing that child.  Often you are starting your first nursing session in the delivery room.  Your child is so delicate and initially has so few needs but food is the most important.  As a new parent I spent all of my time feeding or worried about feeding E.  Every two hours from the time the feeding starts, newborns are ready eat. E was a lazy eater and a nursing session took about an hour.  So he was eating every other hour.  I’m pretty sure all I did was feed this kid for weeks!  As your child gets older there are more needs you have to meet.  When you don’t have the food one down, this becomes very stressful.  Now you are just piling on the stressors.

For us, we got to a point where we had identified E’s triggers.  He was no longer reacting to new foods and we had determined that there were 7 foods to avoid.  Don’t get me wrong, a few of the 7 were big ones – Dairy, Egg, Soy; and a few were easier – Rice, Oat, Coconut, and Shellfish.  As difficult as it can be to avoid entire food groups, this knowledge was a huge turning point for us.  It was almost like we could move on with our lives, which was good because our lives were moving on.

Feeding was no longer our biggest stressor

We spent November and December 2014 going from food challenge to food challenge.  I thought it was a stressful time – always on the lookout for symptoms, right in the middle of holiday celebrations.  In January 2015 my dad suddenly passed away.   I could write an entire post about this event, but almost two years later I still don’t feel ready to do that.  Suffice to say that E’s food allergies took a back seat to almost everything else.  The grief was so overpowering that I didn’t really have the energy for anything else.  As I mentioned in my last post, I attempted to use some easy food trials to boost my mood, but the fails were even more devastating.  I had to shift my focus away from E’s food allergies and get myself and my family through an awful transition.   But this was possible because all I had to do was to avoid the 7 foods that were E’s triggers.  In fact, being able to wrap my head around that one constant was almost comforting.  So we moved forward in life while treading food allergy water.

We got through the initial grief and were faced with other distracting stressors – we bought a house, embarked on potty training, and I hunkered down to finally finish my dissertation.  We decided not to force the food issue until we were mentally ready, which took a while.  I mean, why mess with the one stable thing in our lives? All of the brain-washing, I mean teaching, that we had been doing since we entered the allergy world was paying off.  E was old enough now to know about his allergies and was really good about making sure food was safe before he eating it.  He also has some pretty awesome cousins who looked out for him and made sure to keep him safe at family parties.  He was used to having his own safe version of party foods and didn’t seem to be bothered by the fact that his cupcake was different from everyone else’s.

Back to Trials

We enjoyed homeostasis for a while but eventually we felt ready to tackle some of the lingering questions we had about the winter’s food challenges.  Remember that he passed oat, rice, and dairy challenges in the hospital but then had weird, possibly chronic reactions (lethargy, rashes, etc) once we continued the food at home.  We ended up pulling all of those foods and just waiting it out.  In the spring we had an appointment with E’s allergist, who we love.  She suggested approaching the food trials a little more realistically.  For example, it wasn’t really necessary for him to tolerate a 1/2 cup of rice every day for 2 weeks. Rice isn’t that important to our diet and he was unlikely to eat rice that way in “real life.”  Her thought was that we should be a little more gradual, introducing the foods every couple of days, and allowing his body to get used to it over time.  It was also probably ok to stop once he was eating rice a couple of times a week or two to three days in a row.  She also thought it would be helpful to back up the dairy trial to baked dairy.  When you bake food proteins, the heat breaks them down.  Sometimes they are broken down enough that the body doesn’t realize it is the same protein that should cause a reaction.  It also allows the body to get used to the food before introducing the full protein.

pizza

So last summer we tried baked dairy.  Jonathan made white bread with cow’s milk.  E ate it everyday in his pb&j and it was great, no problems.  We decided that dairy baked into a matrix is safe.  (A matrix means that the dairy is pretty much unidentifiable when the food is eaten, like the milk that is mixed into the bread.  You can’t look at the bread and see dairy, but it is there, though presumably pretty broken down.)  We got daring and tried pizza with melted mozzarella on top.  So, baked, but not for very long and not into a matrix (it was still identifiable in the finished version).  E loved pizza! And still no problems.  As a last step to our cooked dairy experiment, I made macaroni and cheese.  E also loved macaroni and cheese!  However, this one was not as loved by his body.  After a couple of days, he had awful diaper rash.  The kind of rash that resulted in both of us crying during diaper changes.  So we pulled dairy that was not officially baked into a matrix.

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Ethan’s 3rd Birthday Cake – a sandcastle theme with soy and dairy ingredients.

We waited for the rash to clear up and for everyone to feel emotionally ready again and and then tried baked soy. After the baked dairy pass, I felt good that baked soy was going to go well.  I even kicked off the trial at his birthday party by putting silken tofu and soy milk in the cake.  Thankfully he didn’t react that day, but after a few days we started to see the rashes again and decided that baked soy (and so all soy) was a fail.

So much of the FPIES literature says that the symptoms go away by age 3.  Here we were kicking off 3 with a soy fail and a recent dairy fail – it was disappointing and disheartening.  It took a while for us to feel emotionally ready to start another trial.  We decided to go with rice this time, following the doctor’s recommendation of a very gradual introduction without pushing to large quantities every single day.  I don’t know if it was the gradual approach, the fact that we were finally officially out of diapers, or if E had truly outgrown the allergy since the previous trial, but he passed the rice trial!  We felt confident that any amount of rice that he would eat would be safe, including several days in a row of Rice Krispies.  We still don’t eat a ton of rice but crossing a food off of the list was incredible!

The rice pass gave us the confidence that we needed to move forward with more trials.  We embarked on a baked egg trial.  Egg is a big one – it’s in so many foods.  We decided to dust off our strict food trial protocol for this one.  So we did 12 days of baked egg, mostly in the form of banana muffins.   It was a success!  We jumped into scrambled eggs, saw no reactions and haven’t looked back!  E now regularly enjoys eggs in baked goods and loves scrambled eggs.  I had forgotten how easy it is make scrambled eggs and I’m thrilled to have an easy go-to meal on hand for days when I don’t feel like cooking.

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Scrambled Eggs get Two Thumbs Up!

We were on a roll and it had been over a year since the macaroni and cheese reaction so we felt ready to try dairy again.  We knew that baked dairy was safe so we started with cheese this time.  I figured it was still somewhat processed but got at “raw dairy.” Again, we started off with the strict food trial protocol.  We had a couple of little issues related to sticking with the protocol and some questions about whether symptoms (coughing, runny nose, lethargy) were related to the trial, seasonal allergies, hot weather, or just being a on vacation.  We didn’t have enough data to clearly blame the cheese so we added some flexibility into our approach.  We stopped the cheese for a couple of days, started again, took breaks when we needed to.  We were pretty sure the other factors were the cause of the symptoms but dairy is everywhere and wanted to be sure.  Once we got to a good baseline, we restarted a strict protocol, this time with a cup of milk.

E was nervous to drink “cow’s milk.”  How many three-year-olds specifically state the source of the milk?  After his first taste he declared that it “tastes just a little bit like cow” and finished the cup.  However, the next day he wasn’t really interested in drinking it and asked for hemp milk instead.  I guess milk is more of an acquired taste than I realized.  In a desperate move to get through the trial, I added sugar and cocoa and we continued the two week trial using chocolate milk.  The trial was a success and it only took a couple of days to make it clear that he was no longer going to get chocolate milk every day.

Celebrating a Dairy Pass!

The lack of reactions to milk opened up a ton of doors! E’s mostly healthy diet took a nosedive as we introduced to him to the world of cheese, yogurt, and ice-cream.  He is so excited for this new safe food and often tells strangers that dairy is safe (which I then have to explain).  Every time he tries a new dairy-containing food, his eyes light up and my heart melts a little.

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Frozen Yogurt for Dinner!

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Milkshakes!

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Ice Cream Cake!

So, that’s the brief food-allergy related synopsis of the past 20 months.  Three foods (2 of them biggies) off the list!  The FPIES journey isn’t a straight line, that’s for sure.  We had a lot of false-starts and set-backs, but we got there.  We are now still avoiding 4 foods, including soy, which is more pervasive than most people realize.  But we are optimistic about the future.

Moving Forward

In other news, we are settled into our new home, which we love, and I finally defended my dissertation.  Most excitingly, E will become a big brother any day now!  E is now 4 years old, completely out of diapers, incredibly verbal, fairly independent, and has outgrown many of his allergies.  Starting over with a newborn is daunting in many ways, especially knowing that we might be jumping back into the early days of FPIES.  I’m trying to be optimistic about her living an FPIES-free life, but I feel prepared this time.  I know what to look for, when to get help, and what to expect.

We’ll hold off on new trials for a couple of weeks until we get through the initial excitement of the baby’s arrival.  However, I am determined to do a shellfish/shrimp trial before Christmas.  Our family has a tradition of shrimp scampi on Christmas Eve and I really want E to get to partake this year.  As for the other foods – we’ll get to them when we are ready.

I’ll try to check in again soon to let you know about how our little princess is doing and when we are ready to attack the rest of E’s list.

If you are an FPIES-parent, please hang in there.  The beginning is so very difficult but the victories are so very sweet.  Most children have the results that E has had, you’ll get there.

I also have to send out a huge thank you to all of our family and friends.  We are so lucky to have so many compassionate and caring people in our lives.  They do whatever they can to keep E safe and me sane.  So many are willing to provide safe food or change a menu for E.  Your willingness to accommodate my son means more than I can ever express.

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So Much for Our 4-Year-Old to Celebrate this Year!

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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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Making Valentine’s Day Special

Shortbread Hearts

When I was a little girl my dad always bought me and my sisters Valentine’s Day gifts.  It was usually something small, often a plastic container that was filled with conversation hearts or a heart-shaped box of chocolates, maybe a small knick-knack or stuffed animal.  I remember how that little trinket waiting on the kitchen table in the morning would bring such joy.  I remember showing it off to my friends in school and it being my prized possession for at least the next several days.

This year I am treasuring those memories a little bit more because it is our first Valentine’s Day without my dad, who passed away very suddenly last month.

I’ve got to admit that I was dreading this weekend.  Not only is it the first holiday without my dad, but his birthday is also Monday, a double-whammy of reminders not even a month into our grieving process.

To counteract the sadness that I’ve been feeling, I decided to focus on making this Valentine’s special for E, the way my dad always made it special for me.  So, out came the trinkets!

Car Valentines

I decided that it was only appropriate to celebrate E’s current true love – cars!  So, I came up with these little valentines, one for E and others for his cousins and some special Stroller Strides friends.  I was really happy with the way that they turned out and was super-proud of myself for creating valentines that were non-food (i.e., completely safe and healthy) and something that every toddler loves.  They even leant themselves to a cute, Valentine’s Day-appropriate saying.

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He was so excited to get a car and was surprisingly willing to share the love. (I was a little worried that he was not going to like the idea of giving away cars.)

IMG_4036I added to our Valentine’s Day festivities, with another thing every two-year-old loves – cookies!  We used Ina Garten’s shortbread cookie recipe (by the way, shortbread is egg-free!).  We substituted soy-free Earth Balance for the butter and topped them off with safe red sprinkles (Wilton are safe for us).  They were a lot of fun to make and E gets so excited when he gets a “surprise” for dessert 🙂

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Also, my heart-shaped strawberry project from last year, inspired me to use cookie-cutters to Valentine-ify his standard peanut butter and jelly sandwich.  I love that something as simple as cookie cutters can make so many safe foods more fun!

Heart PB&J

My Valentine’s Day was totally made first thing this morning, though, when E said, “Happy Valentine’s Day Mommy, Daddy” and initiated a big group hug.  Seriously could not think of a better gift!

I hope you are having a great Valentine’s Day with your loved ones.  Hug them a little closer and extra long this year.

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 Happy Valentine’s Day to My First Valentine! I Love You Dad!

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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.

photo 4Cheers!

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?

0

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

A Season of Challenges

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We are stocked up and ready to go for the first challenge – milk, new cars, and a bravelet to remind mommy to “be brave”

E was diagnosed with his IgE milk allergy on a Friday afternoon, the Friday between Christmas and New Year.  The allergist appointment and events of that night were a stressful whirlwind of emotions and logistics.  Despite our feelings of anxiety and fear related to the fact that milk was equivalent to poison to our four-month old, we had a limited amount of time to fill the prescription for the epi-pen and figure out how we were going to get our hands on Neocate (let alone pay for it) before we went into another holiday weekend.  On top of all of this we had a baby boy who was totally off of his schedule, hungry, and still wondering why we let a stranger scratch his back.  At some point that evening I called my mom to fill her in.  She was anxiously awaiting the results of our appointment and I needed to process.  I told her about the allergist’s impressions and the scratch test and learning how to use an epi-pen and the new formula that was going to change our lives.  And I mentioned that the next time E tried milk it would be in the hospital.

It’s no wonder that in all of the chaos of that night and the relay of information (that I didn’t even fully understand at the time), that there were some miscommunications.  A couple of days later my sister called me confused, “Mom said that E will have to try every new food in the hospital, is that true?”  I explained to her that it was only milk that he would have to try in the hospital and that it would be ridiculous to have to try every new food in the hospital.  He was only four months at that time but the allergist had already told us that new food could be introduced when he was ready, while avoiding milk.  We laughed about the miscommunication and the absurdity of trying to feed every single new food to an infant in the hospital.

Ah, ignorance was bliss.  At that time I had no idea how complicated our relationship with food was about to become.  After that E continued to have chronic FPIES reactions as well as several acute reactions.  We learned that we do indeed have to introduce new foods in a very controlled and drawn out way and that every new food has the potential to be an allergen.  While we are able to introduce most new foods at home using one of our own food trial protocols, we also have two clinic-based food challenges under our belt (neither one for milk) and we are gearing up for 3 more before the end of the year!

Starting today we will embark on 6 weeks of food challenges/trials.  We will go to the hospital’s out-patient clinic every other week for E to have his initial dose of dairy, rice, and oat.  If he passes the first day, we will complete the rest of our two-week food trial protocol at home.  These are the allergens that we’ve known about the longest.  The ones that pretty much define E’s FPIES.  I’m super-nervous and plan to be super-strict about the trials.  And we are doing all of this over the holidays!

You know, because it isn’t stressful enough to take your food-allergic, curious toddler to holiday parties and dinners hosted by other people.  Now we’ll be doing it in the midst of food trials, when an accidental exposure will cause even more stress and confusion than usual.

Oh, and just for a little extra excitement, we made an offer on a house last night. So we might be moving during all of this.

You’re right – we probably are crazy. But these appointments were the earliest we could get.  We made the appointments in September and the first available was November.  We didn’t want to have to wait any longer than that.  E has been avoiding dairy since December 2012 (about 23 months) and rice and oat since about March 2013 (about 20 months).  His scratch tests have been negative for all IgE allergies (including dairy) for the past 18 months.  We are well over the 12-18 months of avoidance that is generally recommended and we are eager to find out if he is still allergic.  I feel like I need know.  I need to know if I have to continue to be so paranoid around these foods.  I need to know what we are dealing with.  And the only way to know is through a challenge.

I have no idea how the challenges will go.  I vacillate hourly between daydreams of passing the challenge and sharing ice cream with my son and preparing myself for the devastation of a fail.  This is our third challenge in the last year.  We know the drill.  We know where the clinic is, where to park, how to check in.  We know the procedure, that we’ll wait in a waiting room (where they will be irritatingly be playing Spongebob on the TV) until 8:00, when a nurse will take all of the families up the the clinic.  E’s vitals will be taken, we’ll be assigned to a room, we’ll meet the attending.  E’s allergist decided that he doesn’t need an IV this time, so hopefully he will face less trauma and get his first dose of the challenge food earlier that he has in the past.  We have new cars to play with and all the Curious George episodes on an iPad. Hopefully we can keep my active little boy busy and happy all day in a cramped hospital room

So far we are 50/50 – E has passed a challenge and failed a challenge.  We’ve experienced the stress and disappointment of a fail and the joy and relief of a pass.  We’ve left the hospital at 4 pm in different clothes, 4 hours after a reaction that soaked both E and I in vomit.  And we’ve left at 2 pm, an uneventful 4 hours after E ate a dose of barley.  But I can’t predict the outcome of today’s challenge.

To say that I’m anxious is an understatement. For the past two years I have treated a glass of milk near my son as though it was a loaded gun. Today I will put on a happy, excited, encouraging face and watch as he drinks milk. I can’t ignore that at one point he tested positive for an IgE allergy. It’s possible a fail today could result in an anaphylactic reaction, not “just” an FPIES reaction. It’s unlikely, but possible. I know that he’ll be safe. He will be watched closely by medical professionals as well as his father and me. But I’m still worried.

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Waiting for the first dose of milk

So, if you have a minute today, we would really appreciate any prayers, positive thoughts, good vibes, etc, we’d really appreciate them. I’ll do my best to post an update tonight or tomorrow.

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.

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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…