8

Oat & Rice Trial Update

IMG_4300

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.

IMG_3879

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.

IMG_3953

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?

IMG_3950

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.

0

A Season of Celebrations

 photo

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.

IMG_4673

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!

photo 1

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!

IMG_4140          IMG_3654

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!

IMG_4764

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!

photo 2 photo 4

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!

photo 1

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.

Santa2

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…

0

Dairy Challenge Day 2 – So Far, So Good…

IMG_3608

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.

IMG_4091

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.

IMG_3603

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

IMG_2650

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.

photo

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.

5

Mexican Cauliflower “Rice”

Mexican Cauliflower Rice

After the last recipe that I posted, which is quite possible the world’s most decadent vegan cake, I figured I was due to post something a little more healthy.  This mexican cauliflower “rice” is one of our newest favorites! It’s so easy and loaded with vegetables.  It’s very low in calories but tastes like a splurge.

Rice is one of the top four FPIES allergens, so it is avoided by most kiddos with FPIES, including E.  However, cauliflower tends to have a pretty high success rate (according to the results of a survey conducted by an FPIES parent).  Apparently cauliflower is also high in vitamin C and folate and there are a lot websites that state that it helps prevent cancer (I didn’t take the time to verify these claims).   I think of cauliflower as a basic vegetable staple that is great cooked or raw.  It’s also very low in calories – a cup of cauliflower is only 27 calories (a cup of white rice is almost 8 times that!).  So it seemed to be a good vegetable to add to E’s diet this summer.  I am happy to report that he easily and enthusiastically passed a cauliflower food trial and cauliflower has been a welcome addition to his diet.

Given our success with cauliflower I was excited to try some of the recipes that I’ve come across that use it as a rice-alternative.  It’s always nice to have a new dish for E and even better when it’s suitable to serve as part of a family dinner.  I have to admit that I was skeptical at first, could a vegetable really replace a starch?  The surprising answer is – yes!  I’ll admit that the “rice” is a little more crunchy but the dish is so flavorful!   The best compliment came from my brother-in-law who several hours after dinner said, “wait, there wasn’t any rice in that?”  It really is that good!

It’s actually pretty easy to turn cauliflower into “rice” if you have a food processor but it can also be done by hand.  I used the tutorial on the In Sonnet’s Kitchen blog, but it’s basically just a matter of grating cauliflower.  One thing I would add is to hold the cauliflower perpendicular to the grater, otherwise you’ll get some longer “grains of rice,” which isn’t the end of the world, it just makes it looks less like rice.

IMG_2631

My cauliflower rice! (I think its pretty convincing)
IMG_2633
 If you look closely you notice the longer “grains”

I had a very specific goal for this recipe.  I wanted to substitute Rice-A-Roni spanish rice to be used as a side dish for a mexican fiesta.  I found a couple of recipes online that used real rice and adapted it for the cauliflower.  This recipe calls for about 6 cups, which is about what you get from a medium head of cauliflower.  The recipe is pretty forgiving, though, so don’t feel like you have to use exactly 6 cups.  I decided to go with a vegan option here and use vegetable stock, however I have also made it using chicken and beef stock.  I didn’t notice a huge difference in taste between the three.  I like Kitchen Basics stock because they have an allergen statement on their box (I love it when a company is aware of the difficulties we face) and they are really helpful when you call to ask about their ingredients.  They are also available by phone until 8:00pm so you can talk to a real person when you glance at the box the second before you add it to a dinner recipe at 5:05pm and realize that the ingredients on the box changed since the last time you used it – not that that’s ever happened to me :).  You can probably make the “rice” a little softer (and more rice-like) by cooking it longer, but I’m generally too impatient and don’t mind the slightly different texture.   You can also change the level of spicy heat by adding diced tomatoes with jalapeños instead of mild chilies and changing the amount of chili powder.  I love a versatile recipe!

Mexican Cauliflower “Rice” (dairy-free, egg-free, soy-free, grain-free)

Ingredients

  • 3 tbsp olive oil
  • 3 minced garlic cloves
  • 1 small yellow onion, chopped
  • 6 cups cauliflower “rice” (see link above)
  • 2 tsp chili powder
  • 1 tsp oregano
  • 1 tsp ground cumin
  • salt to taste (about 1 tsp, depending on how salty the stock is)
  • 1 can (14.5 oz) diced tomatoes with green chilies
  • 1 cup vegetable stock
  • one bunch scallions, sliced

Directions

Heat oil in a large skillet.  Add onions and garlic and sauté until just soft and fragrant, about 3 minutes.

Add the cauliflower to the skillet and stir to distribute the onion and garlic through the cauliflower.

Add the chili powder, oregano, cumin, and salt, stirring well between each one.

Add the tomatoes and stock, stir well.

Bring to a low boil, cover and let simmer until desired tenderness (about 10 -15 minutes).

Remove from heat and stir in the scallions (or use a garnish sprinkled on top).

Enjoy!

IMG_2650

The two recipes I used for inspiration are from Sweet C Designs and Cherished Bliss.
9

Food Trials & Tribulations

IMG_1587

If you know me or have read almost any other post on the blog, you know that I am kind of obsessed with research.   I think it’s important and use it to guide many decisions in my life, maybe too many.  (For example, it probably wasn’t totally necessary to spend several weeks debating the merits of various down comforters.) As a therapist it wouldn’t even occur to me to develop a treatment plan for a patient that wasn’t guided by research.  So you can imagine, that when it comes to my son, there is no such thing as too much research. Which is why this conversation I had at E’s last allergist appointment is both amusing and infuriating to me:

Me: How long should a food trial be? I’ve scoured the literature and can’t find any recommendations.  I feel like it’s all about superstitions.

Allergist: You’re right, there really isn’t anything in the literature and it’s different for every child.

Me: Is it necessary to incorporate a break into a food challenge?

Allergist: What does the literature say? *she said with a smirk that told me she already knew the answer*

Me: Nothing, I can’t find anything1

Allergist: *shrugs* Like you said, it’s all Voo Doo

I love E’s allergist.  She’s wonderfully down to earth and very aware of the literature and has no trouble acknowledging when there isn’t really a good answer.  She often admits to going with her gut when we have a question about how to proceed.  But sometimes I wish there were “real” answers based on actual data.

The thing about FPIES is that there are many children who react to multiple foods.  So any food can be an allergen.  And, of course, there is no way to know which foods are allergens until there has been a reaction.   The only way to really know which foods are allergens and which are safe is to introduce one food at a time for a trial period until you know it is safe.  I’ll never forget the helplessness that I felt after E’s first acute reaction and the confusion because we had no idea what caused it.  From then on I knew that I had to treat E’s diet like one of my controlled scientific experiments.

photo 2

It was clear to me that every time we introduced a new food into E’s diet we had to do an at-home food trial. The procedure for such a trail was anything but clear.  I didn’t know how long a trial should be, how much food should be given, and then there was this whole issue of whether the days should be consecutive or if there should a “break.”  I knew this was important and I wanted to follow the best methodology but had no idea what that was.

My literature search turned up almost nothing so I hit the internet and turned to the other FPIES experts, the parents who are living with it every day.  If food trails were about trial and error, I figured I could at least capitalize on the trials and errors of others.  (By the way, the Cradle Rocking Mama has a great post that summarizes some of her own unofficial FPIES parent polls regarding food trials.)  I then threw in what I’d been told by allergists.  But I quickly learned that the most important ingredients in the food trial recipe were my own experience, E’s history, and my gut feelings.  Not exactly empirical but it’s all I’ve got.  The way we’ve done food trials has been evolving since we first introduced solid food and will likely continue to evolve.  We may never have the perfect method but we have something that can guide us through this mess that can be FPIES.

For me the biggest question was the length of the trial.  When we first started introducing foods we did the typical “4 Day Wait Rule.”  If there were no problems after 4 days we considered it safe and moved on.  Most parents abide by this rule of thumb for the first foods they introduce.  The idea is that if there are any issues with the food you will probably know within the 4 days.  Most parents also abandon this rule at some point, once it becomes clear that their child is not reacting to anything.  We were doing well with this method for several months as we introduced fruits and vegetables.  However, our allergist recommended waiting 7 days for foods that were more likely to be problematic for our food-allergy-prone son.  The list of the 7 day foods included meats, wheat, and eggs.  I eventually decided that it was better safe than sorry and started giving all foods a full 7 days.  I thought I was being conservative until the attending allergist at E’s soy challenge told me that I should try a food for 12 days before declaring it safe!  The scientific literature was no help here, with some authors suggesting that a child would react after one or two exposures and some acknowledging that the number of exposures before a reaction is unknown.  When I polled a Facebook support group, the other FPIES parents reported food trials that ranged in length from 3 days to 3 weeks!

While I wanted to scoff at the idea of a super-long trial, I had to rely on what I knew.  An objective review of our data indicated that E’s reactions were always after a lot of exposures.  This is what led to all of the confusion with his egg and coconut reactions.  We trialled his birthday cake (made with coconut flour and a ton of eggs) for 7 days, per our allergist’s recommendation.  He did fine.  He then had a cupcake on his actual birthday (day 8) and more cake at his birthday party (day 9).  He didn’t have egg or coconut again for a week or so until I made coconut flour banana bread and he reacted (day 10).  This realization made me reconsider the 12 day recommendation, to be on safe side.  Of course (probably because I’m crazy), I then started questioning everything that we had previously considered safe that may not have been eaten for at least 12 days.  So we embarked on secondary food trials of all of E’s “safe” foods.  Not only was this annoying, but it held up the introduction of new foods.  Still, better safe than sorry – I had to KNOW what was safe and what was still risky.

IMG_1665 There are worse things than a 12 day chocolate trial 🙂

Now that I had decided on a 12 day trial period I needed to decide how much food to give E each day of the trial.  There seem to be a few schools of thought on this one.  Some people start with very small amounts (i.e., a teaspoon) and increase the serving very slowly over several days while others allow their children to eat as much as they like, regardless of how much it is.  I went with my allergist’s recommendation, which also just felt right to me.  She recommended that we start with a small amount and increase over a couple of days.  Depending on the type of food, I usually start with one piece (such as on piece of rotini for the first day of a wheat trial) or one ounce (fluid or weight, whichever makes sense).  I then increase by 50% or 100% (honestly, it’s based on whichever feels right and looks right based on the serving size and what E ate the day before) each day until we reach a full serving size, which I aim to meet around day 5.  I then continue to give a full serving for the next several days.  If everything seems to be going well I increase the serving size on the last day or two.  I try to give him an “overdose” of the food during the trial, so I never have to worry about him eating too much later and having a reaction when we aren’t ready for it.

Timing is also important and a personal preference.  Some people always give the trial food in the evening when both parents are home and can evaluate and treat symptoms.  However, I think the majority of parents, myself included, prefer to introduce the trial food first thing in the morning.  This ensures that he’s hungry and will likely eat the whole portion and also gives me all day to watch for a reaction.

IMG_2039

Who doesn’t love tuna first thing in the morning?

Then there was this idea of “the break.”  I was researching and trying to figure out FPIES for months before I even heard of this.  It turns out that some parents incorporate a “break” into their trials, during which they stop giving the food.  Then they reintroduce it several days later and continue until they reach the end of their trial period.  There is actually one paper (6) that mentions this practice.  The idea is that if a child is having a very low-grade reaction that is primarily taking place in the intestines and may be accompanied by some nonspecific symptoms, like loose stool or fussiness, it might be impossible to distinguish.  However, it seems that sometimes when the food is reintroduced after a 2-3 day break, the reaction will be more severe and acute.  When I looked back at all of E’s recent acute reactions – egg, coconut, shellfish, soy – all occurred following several days to weeks (or even months) of not having the food.  I was sold on the necessity of the break but am still uncertain as to when I should institute it.  My unscientific Facebook survey responses were anywhere from after trial day 4 to after day 12.  Honestly our breaks tend to happen on their own – I run out of the food or E is going to be with his grandparents for the day or we have a busy day scheduled and no time for a reaction.  But the scientist in me wasn’t comfortable without a real protocol so once again I relied on our past experiences.  I now aim for a break around day 9, given that E’s reactions have been around day 10 or 11, following a break.  I try to do at least a 3 day break, but don’t worry too much if it’s longer.

So, there it is.  Every new food for E begins a food trial that lasts a minimum of 15 days.  We start with a low dose, increasing it slowly over about 5 days.  We then give an appropriate serving size for another 4 days.  We try to give him the food every day (mostly to get through the trial as quickly as possible) but I don’t worry too much if we take a day or two off for whatever reason.  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.  Remember, the most important aspect of the food trial – during the trial no other new foods can be given.  If you introduce another new food during the trial and see a reaction, you’ll have no way of knowing which food caused it.

IMG_3480Enjoying the end of a food trial with some friends

Is this system necessary? I don’t know, maybe not.  But it provides me with so much piece of mind that it’s worth the stress and hassle.  Now I can know for sure which foods are safe.  Any food can be an allergen and I’ve had my fill of surprise reactions and never want to try to get vomit out of the car seat again!  There have been a couple of times when Jonathan and I considered giving E an un-trialed food but the bottom line is that it’s not worth it.  The stress of having a reaction that we are not prepared for is too great.  The chance of ending the day covered in vomit, or worse – in the hospital, is too scary.  This system might not even catch every allergen, it is a work in progress but so far, so good.

Knowledge is power and I’m always trying to get as much power as I can over FPIES.

I’m always interested in what other FPIES parents do for food trials.  Does it look like ours? What do you do differently?

UPDATE: Check out my newer post, Food Trials: Variations on a Theme, to see how our trial protocol has evolved and other ways that we trial food.

5

Research Revelations about Timing Food Challenges & Conducing Food Trials

highchair laptop

After my not-so-pleasant encounter with the attending allergist at E’s soy challenge I changed my approach.  I realized that I was actually more angry with myself than with the doctor.  I was approaching FPIES all wrong and wasn’t being true to myself.  Maybe that is why it all seemed so difficult.

So I started over.  I did what I always do when I have a problem.  I hit the books.  Well, more specifically, I hit the online databases.  It occurred to me that I really didn’t know all that much about FPIES.  When E was first diagnosed with his IgE milk allergy I bought a book and read and researched as much as I could in the small amounts of free time and on the small amounts of sleep I had.  I was able to wrap my head around IgE allergies and felt pretty confident moving forward.  After it started to become clear that we were actually dealing with FPIES I never went back and researched FPIES.  I’m not sure why, maybe I was just too exhausted, or in denial, who knows the reason, but I didn’t do the research.

Now we had all kinds of practical questions and some information from an allergist (who wasn’t E’s primary allergist) and nothing concrete to go on.  I considered making an appointment with E’s allergist but felt like it was most important to me that I arm myself with data first.  I actually started with lists of articles that the International Association for Food Protein Enterocolitis (IAFFPE) and the FPIES Foundation provided on their websites.  I also used related article searches on PubMed.  I spent about a week reading everything that I could.

Let’s stop there for a minute.  A week. I could read everything that has been published about FPIES in one week. I’m not talking about a week of 24/7 reading, either.  I’m talking nap times and after E’s bedtime but before mine (which is a pretty small window).  A week is an incredibly short amount of time to read all of the scientific literature on a topic.  For example, I have been reading about psychological factors and diabetes for about nine years and could never hope to read it all.  All this is to say that there isn’t much out there about FPIES.

And that is pretty much what I ended up learning: no one really has the FPIES answers.

Sadly, most of the FPIES literature is still at the point of describing the symptoms of chronic and acute FPIES.   There aren’t really any guidelines for living with and treating the syndrome, though the IAFFPE is working really hard to change that.  There were a couple of papers that describe one doctor’s or clinic’s experience with FPIES and that is the best that we have to go on.  At this point I was most interested in when to challenge a food that is thought to be an allergen.  Specifically, I wanted to know if I should go ahead with E’s rice challenge that was scheduled for February, about 11 months after his last exposure and end of chronic FPIES symptoms.  I also wanted more information about food trials – how to know a food is safe.  Specifically, how many days before we are in the clear.  We were still basically doing 4 day trials, 7 for riskier foods, but the attending at E’s soy challenge declared that 12 days of a food was necessary.

Here’s what I learned from the scientific literature (by the way, a few more articles have come out since I did my research blitz in December, so I updated what I found and have included everything I could find as of June 2014):

challenge warm packs

Waiting for the IV Team at E’s Soy Challenge

Best Timing for an Oral Food Challenge

Food challenges suck.  It sucks that the only way to tell if your child is allergic to a food is to feed him that food and then wait and see if he reacts.  But it’s all we’ve got and when they are passed it makes it all worth it, so I guess they are a necessity.  I obviously want to time food challenges so that they have the highest probability of being passed, so I was looking for recommendations about when to challenge and/or time to resolution of FPIES allergies.  I was most focused on rice FPIES at the time, but also kept notes on E’s other allergens so that I could make informed decisions about when to challenge all of them.

Solid Food FPIES (Rice and Oat)

There are only few articles available about solid food FPIES, as it is a relatively newly recognized syndrome (historically it was believed that you could only have FPIES to milk or soy).   What I did find was not reassuring.  In one sample only 40% of the participants tolerated rice at 3 years (17).  The same study reported that 66% resolved FPIES to oat and 67% to vegetables by 3 years (17). Thankfully, another study reported 80% of rice FPIES resolved by age 3 (111).   And a study that only contained two patients with solid food FPIES (one to rice, beef, and egg, and the other to shellfish and fish) reported that both children outgrew their sensitivities by age 2 (108), better, but we are basically talking about a case study here.   Unfortunately, the most recent research suggests that the median age of resolution is much later – 4.7 years for rice and 4 years for oat (106).   The authors of this study used a statistical tool called survival curves to determine the probability of outgrowing FPIES at different ages.  At age 2 the probability of outgrowing rice FPIES is about 13%, and oat was not quite 20% (106).   So, by the numbers, it doesn’t really seem worth testing rice until at least age 2, and age 3 would be even safer.   There is also some data that suggests that reactions to rice are the most severe FPIES reactions and require IV fluids most frequently (111).   The closest thing I found to recommendations for when to try rice was to wait 12-18 months after the last reaction (5, 106).  These data did not really make me want to rush my 17 month old into a rice challenge only 11 months after his last reaction.  I decided that not enough was gained by passing rice and the chance of a fail was too high and risky at this point so I decided to postpone the rice challenge for a while.  

Cow’s Milk FPIES

There’s more data available regarding resolution of milk and soy FPIES.  Again, this question was usually addressed in terms of age of the patient.  The study that examined the youngest participants reported that 27% of 6 month-olds tolerated cow’s milk, 42% of 8-month-olds, and 64% of 10 month-olds.  These authors reported that all participants were able to tolerate cow’s milk by 20 months (108).  But perhaps the most cited study on the topic reported that only 50% of children recover from cow’s milk FPIES by one year, 75% by 18 months, 89% by 2 years, and 94% by 30 months.  In this study, the average child outgrew cow’s milk FPIES by 12 months (109).  In a study that measured how long it took for the allergy to resolve (presumably after their last positive challenge), milk FPIES was outgrown in 60% of (10) patients over a median time of 24 months (ranging between 6 and 30 months (112).

Unfortunately a brand new paper that is currently in press has some pretty bleak findings regarding resolution of cow’s milk FPIES (106).  They report that the median age of resolution is 61 months (106)!   The survival curves suggest that at age 2 the probability of outgrowing milk FPIES is only 10% (106).  Based on these findings and a review of the literature, the authors of this recent study suggest challenging cow’s milk between 18 and 24 months after the last reaction (5, 106). 

There’s also some interesting data about positive IgE tests in children with FPIES.  Remember, E’s initial skin prick test (a test for IgE allergies) was positive to milk, so this is relevant to us.  It seems that patients who had a positive IgE test to milk at any point in their history have a more persistent FPIES course (106, 112).  In that study, none of the children who had a positive IgE test resolved their milk FPIES during the study period of over 13 years (106)!  Several authors recommended that a skin prick test should be conducted prior to a challenge and an IgE challenge protocol followed if there is any positive reaction to the IgE test (5, 106).  

I don’t really know what to make of E’s positive initial skin test.  All others have been negative and the result was small for the first one (but so was he – he was only 4 months old!).  The majority of the data suggest that we should wait to try milk until at least 2 years.  The most recent article is pretty depressing but it’s also a bit of an outlier so it’s hard to put too much weight on it.  Besides, those authors are still the ones that recommend the 18-24 month waiting period.  By age 2, E will have been dairy-free for 19 months, so I think waiting until then is a good plan for us.

Soy FPIES

The numbers for soy are a little more confusing because they are so divergent.   One study reported that only 25% of their sample outgrew soy FPIES after 24-36 months (112).  However, others have found that the average patient outgrew soy FPIES by 8 months (108).  Some authors have reported that all of their patients were tolerant by 14 months (8) and others have said that 83% outgrow it by age 3 (111).  The most recent (and dismal) data suggest that the median age of soy FPIES resolution is 6.7 years and the probability of outgrowing soy FPIES by age 2 is less than 10% (106).   Again, the recommendation is to challenge soy at least 12-18 months after the last soy reaction (5, 106).   Given the divergent data and that we have heard the 18 month rule of thumb before (13), we’ll plan to wait until at least May 2015 to try soy again.  At that point E will have been soy- (and hopefully reaction-) free for 18 months and will be almost 3 years old.

Like I said there wasn’t much to go on, but there was enough to draw some conclusions and make some decisions.  So I moved on to my next question – what are the guidelines for an at-home food trial? Were our 4 day trials enough? Should we be doing 7 days? Are 12 day food trials really necessary? And how much should he be eating during these trials?

photo

E digging in to a plate of salmon during our at-home trial.

How to Conduct a Food Trial

I have to say that the lack of information about food trials is one of the most disappointing thing about FPIES.  I really wish someone had told me sooner about the importance of introducing foods in a controlled way and the high likelihood that E would react to more than just milk.   But after my review of literature I realize that no one told me this because no one has studied it.   The data here were practically nonexistent.

Length of Trial

The question of whether or not you have to be exposed to an allergen to be “sensitized” to it is a hard one to answer (16), let alone how many times you might have to be exposed or how sensitized you have to be to react.  While it is generally believed that the initial reaction usually occurs on the first or second exposure (6), I only found one article that presented data to address the question.  In that study, it was observed that approximately 64% of infants reacted to cow’s milk within one day of regular exposure, 16% tolerated it for more than 4 days before a reaction and 11% tolerated it for 14-30 days before they reacted (109).    One other paper (6) indicated that the food needs to be removed from the diet for 2-3 days to see an acute reaction (specifically after chronic FPIES).   In general, when looking for a good food trial protocol we are told that “Data are limited and […] it is not possible to suggest a specific course of action applicable to all situations” (13).  So it seems that a reaction will likely occur on the first day but could occur after up to 30 exposures.  Weighing the pros and cons of a longer vs shorter trial period is tough.  Thirty is a big time commitment, especially if only four days are necessary.  But no one wants to be surprised by a reaction to a food they thought was safe… There may also be some merit to building a waiting period into a food trial to be sure that there won’t be a reaction when it is next introduced, which of course makes the trail even longer and there is no indication at which point to institute the waiting period.  

Dose of Food in a Trial

The best information available regarding the amount of food to give during a trial is presented in terms of oral food challenge protocol for FPIES.  The guidelines proposed by Dr. Sicherer (112) are the most widely accepted and used.  He recommends administering 0.6g of protein per kg of body weight (or 0.15-0.30g/kg when there was a history of a severe reaction) in increasing doses over 45-60 minutes as part of the oral food challenge for diagnosis (112).   This calculation takes into account the fact that different foods contain more or less of the protein, so it is a very scientific way to determine dose.  However, it obviously requires research to determine how much of the protein is in the food and then calculations of the appropriate dose based on body weight.  You must also remember that these guidelines were designed based on the assumption that there are trained medical personnel available during the challenge.  It may be prudent, therefore, to administer smaller doses when conducting an at-home trial.  I couldn’t find any recommendations in the scientific literature about how much of a protein to administer during an at-home food trial.

photoAll of this research left me feeling frustrated by the lack of good data and recommendations.  However, surprisingly,  I also felt better.  I finally had a decent understanding of what FPIES is and at least I knew as much as the doctors and researchers knew about when and how to try to challenge foods.   I didn’t have all the answers but I had more than I did the week before.  I was able to make some decisions to move forward but I also knew what I didn’t know. There was still going to be a lot of trail and error in my future but I felt a little more prepared to approach it an educated and scientific way, which alleviates just a little bit of stress from the process.

By the way, I’ve updated the FPIES Journal Articles page with these studies as well as a ton more, so stop over to check it out when you have a chance or if you want more information than I present here.  As always, let me know if you need help finding a specific paper or if there is a topic you’d love for me to research and write about