8

Oat & Rice Trial Update

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

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

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

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

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

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

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

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

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

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The belly rash returns.

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

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

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

“You don’t want rice?”

“No mommy, no rice”

“Why don’t you want rice?”

“I algees mommy!”

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

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

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

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

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

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

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0

A Season of Celebrations

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

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

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

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

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

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

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

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

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

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

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

5

Rocking the Rice Trial!

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

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

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

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

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

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

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

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

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

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.

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.

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My cauliflower rice! (I think its pretty convincing)
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 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!

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The two recipes I used for inspiration are from Sweet C Designs and Cherished Bliss.
5

Research Revelations about Timing Food Challenges & Conducing Food Trials

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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  
7

We never thought to look for a zebra.

zebra1

In medicine there is a saying, “when you hear hoofbeats, think of a horse not a zebra.”  It’s a reminder to consider the most common and probable diagnosis before jumping to the conclusion that there is something rare and exotic going on.   Sometimes when I look back at the first couple months of 2013 I become angry about the recommendations that were made and the symptoms that were missed.  But, FPIES is a zebra, a rare disease that isn’t the first diagnosis to be considered.  We were so busy assuming that we were hearing horses that we didn’t  think to look for a zebra.

The end of 2012 was rough.  On top of the constant fountain of spit-up coming from our son, none of us were sleeping.  E had never been a good sleeper but December 2012 was especially bad.  I have always been one of those people who really needs 9 hours of sleep to function.  On some nights I was lucky to get 4 fragmented hours.  And naps weren’t any better.  By four months, E was napping for about 35 minutes at a time three or four times a day.

It was not lost on me that just before I got pregnant I had done a rotation in a sleep clinic and had successfully treated insomnia in several adults.  I thought I knew a lot about sleep.  I was wrong.  So I started reading.  In my sleepless state I read at least 3 books and countless articles about how to get a baby to fall and stay asleep.  We attempted sleep training several times between 3 and 7 months.  Each time we started with controlled crying, letting him cry for a set period of time and then going in to reassure him.  It was awful.  After I left the room, I would hold my breath, watch him on the video monitor, and fight back my own tears.  He was so worked up.  And then he would vomit.  I had heard of this, babies getting so upset they they vomitted.  This seemed different, but doesn’t it always when it’s your baby?  He was so very upset and the vomit was forceful, an eruption that was clearly visible on the monitor.  When the timer went off, after what felt like years (but was really only 5-10 minutes), my husband or I rushed in and tried to console him.  He was always covered in vomit.  We would move him to a different, dry location in the crib, wipe his sad little face, and leave for another 5-10 minutes.  I think the worst part was that after he finally fell asleep he would start crying in his sleep.  We would go into him but he was still asleep, just screaming.  It was so sad.  We told ourselves that the sleep training was for his own good and our only chance of sleep.  But it didn’t feel right.  After a couple of nights we would give up.  And then, as the desperation set in, we would try it again.  The psychologist in me said that consistency is key.  But the mommy in me said that something was wrong, he was sick, he was uncomfortable, and I couldn’t leave him to cry in his vomit.  So we didn’t sleep and I continued to worry.

By the end of the year we were looking forward to a change.  E’s diagnosis with an IgE allergy to milk was scary – to think that exposure to dairy products could be fatal to our baby – but we finally felt like we were getting somewhere.  All we had to do was avoid milk and our son would start to feel better.  The allergist also suggested we avoid soy.  He hadn’t gotten better during the couple of days that he was on the soy formula, so it was possible that he had a soy allergy despite the negative test results.  I was weaning and he was transitioning to Neocate, a formula that is hypoallergenic.  We trained all of our family members in his emergency action plan and how to use the epipen.  Things were bound to get better soon.

We waited. I think we expected the spit-up fountain to just turn off one day.  It didn’t.  We were still worried, still stressed, still really really tired.  So I bought a book.  That’s what I do.  I read.  I think.  I research until I can understand and wrap my head around what is going on.  I started reading “Understanding and Managing Your Child’s Food AllergiesBy Scott H. Sicherer, MD, a pediatric allergist who is well respected in the field (I later learned he is an expert in FPIES, but that wasn’t on my radar at the time).

I spent all of the time and little energy I had learning about food allergies.  I was most interested in IgE allergies, after all that was E’s diagnosis.  But I’m a bit nuts and I have some sort of a compulsion that requires me to read an entire  book.   I can’t read select parts that seem interesting or skip parts that are irrelevant to me.  I have to at least skim the whole book.  You never know when you might need that other information, right? So I read about the symptoms of IgE allergies – the eczema, the stomachaches, the vomiting.  It all made sense and fit in with his diagnosis.  But I also read about non-IgE allergies.  I read about FPIES and thought it sounded like E’s symptoms, vomiting was a symptom here too, so was poor growth.  I didn’t think he had diarrhea (but who knows – baby poop is weird, right?).  And thank God he never tuned blue or went limp.  I decided it wasn’t a good fit, besides the doctors never mentioned that as a possibility.  I was grateful that we weren’t dealing with a disease that is hard to diagnose has dramatic symptoms.  I continued to skim until I got back to the “relevant” parts of the book. When I finished the book I felt better informed, but was still covered in vomit.

IMG_0602

A rare moment of sleep.

We had a follow-up appointment with the allergist in mid-January.  By that time E was only drinking Neocate but we were still seeing mass amounts of spit-up.  The allergist felt confident in her diagnosis of milk allergy and was not sure why he was still spitting up.  I cried.  I vividly remember holding E in my arms and staring out the office window to hide my tears.  I didn’t know what to do.  Why was this not working?  What was wrong?  How could she not know?  What were we going to do? When would I sleep again? I felt so defeated and helpless.

I was only slightly comforted by the fact that the allergist had a plan.  She wanted him to see a GI doctor and recommended thickening his formula with rice or oats to try to get it to stay down.  She also ordered an atopy patch test to get more information about the milk allergy.  She explained how the test worked and what we needed to do but didn’t give us her rationale for the test.  And I didn’t ask. I was too upset.  She was about to go on maternity leave so we planned to see someone else in the group to go over the patch test results, we didn’t want to wait until she returned to work to get answers.

I think it was in the car on the way home when I realized that I had read about the patch test, in the non-IgE section of Dr. Sicherer’s book.  I felt confused, maybe I was mistaken.  Then I thought back to the red flags I noticed in the FPIES section and wondered if the allergist was also thinking that it might be non-IgE.  She hadn’t mentioned it but maybe it was something she was thinking?  I reread those sections.  The patch test was definitely a test for non-IgE allergies, but it wasn’t widely used, was still considered experimental, and controversial.  I felt like I didn’t really understand the plan but I always believe in collecting as much data as possible.  So I made the appointment.

While we were waiting for E’s patch test and GI visits, I focused on what I hoped would be our solution – thickening his formula.  I had heard of other parents having success with this technique and I was willing to try anything.  Some quick internet research suggested that rice can cause constipation and gas.  I decided to thicken his formula with oats, trying to avoid adding any more GI symptoms to this poor kid.  Thickening the formula was a mess.  The formula was too thick for E to suck through the nipples we had.  I bought nipples designed specifically for thickened formula, but the holes in those were huge and the poor kid couldn’t keep up with the flow.  On top of that, making bottles became more complicated.  Our kitchen started to look like a chem lab with all of the powders, measuring spoons, and scales.  Don’t get me wrong – it would have been totally worth it if it had made a difference.  But it didn’t.  There was no change.  The high volume of spit-up continued, only now it was thicker.

Next was the GI appointment.  We were so hopeful that we would learn something, that they would finally tell us what we needed to do.  That they would have the answers for which we were so desperate.  That E would stop vomiting all the time, feel better, and sleep.

The visit was horrible!  The nurse practitioner that we saw was like the “what not to do” example in an empathy course.  She was terrible at listening and spent the entire appointment telling us stories of other children that spit up a lot.  I guess she was trying to normalize our experience, but she came off as rude and uncaring and totally unhelpful.  The doctor was a little more empathic and spent some time educating us.  He explained that because the upper GI in November was normal and he was already on a hypoallergenic formula,  the spit up probably wasn’t caused by anything physiological and probably wasn’t related to his allergy.  Once again he was diagnosed as a “happy spitter.”  By now those words made every muscle in my body tense up and my skin crawl. No one understood that E was not happy.  Happy babies don’t cry in their sleep.  He explained that the spit-up would likely stop once E became more vertical and his esophageal muscles strengthened, which should happen around 12-13 months.  The GI doctor didn’t think thickening his formula was necessary but didn’t think it would hurt and also wanted us to start to wean him off of the omeprazole.  He thought we just needed to wait it out.  I cried.  E was almost 6 months old and I wasn’t sure that I could do this for another 6 months.

Feb2013

The atopy patch test was in mid-February.  E and I went to the office on Friday afternoon and the patches were applied.  I was under the impression that he was just getting tested for dairy.  However, the order had been for dairy, soy, oat, rice, and chicken.  I thought that was odd but I’m always happy to have more data so I didn’t mind.  I’m not sure when it started to click but I some point I remembered reading that these 5 foods were the top FPIES allergens.  The nurse almost didn’t test for dairy because he had already tested positive in the scratch test.  Luckily, by this point in the process I had started to find my voice and insisted that she follow the doctor’s orders.  Our allergist was on maternity leave and couldn’t be consulted so all of the patches were applied.  But we were told to keep an eye on the patches and remove them sooner if we noticed a major reaction.  To make her point, she told me that sometimes children react so badly that their backs look burned.  Great.  Something else to worry about.

patch test

This is E’s back with the patches applied.

The test consisted of taping small, shallow cups containing the allergen to his back.  The cups were left in place for 48 hours.  We removed them and bathed E on Sunday afternoon and returned to the clinic on Monday for a doctor to read the results.  Over the weekend E developed a cold and also had a couple of episodes of projectile vomiting. Those episodes stuck out as different from the usual spit up, so we chalked it up to the cold and the allergist agreed.   Thankfully, there weren’t any burn-like reactions, but his skin wasn’t clear either.  The test showed a reaction for milk, a smaller reaction for soy, oats, and chicken and an “equivocal” reaction for rice.  Our un-trained eyes didn’t see much differences between the reactions, but we agreed that there seemed to be reactions to all of the patches. The results for milk, and even soy, were not really surprising.  But you can imagine how upset we were to learn that the oats we had been adding to his hypoallergenic formula were a possible allergen! The doctor wasn’t concerned, she was focused on the fact that he didn’t get worse when we added oats.  We were focused on the fact that he didn’t get better.  She suggested we try switching to rice for a week or so and then back to oat to see if there was a change.

As far as we were concerned, there had been a small reaction to rice and we weren’t interested in repeating our oat mistake.  However, I also knew that the best way to diagnose an allergy was with real exposure to the allergen.  Allergy tests aren’t perfect and there are false positives (and false negatives) all the time.  I had also knew that the test was not perfect, or even widely accepted so it was probably not the best thing to base all of our decisions on.  So we gave it a try. Nothing changed.  We even went back to oat, for about 5 days.  No change.  In a last ditch effort, we tried barley.  Still spitting up.  A lot.

By the middle of March 2013 my husband and I finally took control of the situation.  I had been reading a lot and was pretty sure we were looking at an non-IgE allergy, possibly FPIES.  The data supported this and many of the symptoms were consistent.  He was still spitting up soooo much, still seemed uncomfortable, still having trouble sleeping.  I knew he was still sick.  We weren’t making progress by only avoiding dairy and soy.  We needed to do more.  My gut screamed at me to stop exposing him to grains.  I finally listened.  We stopped thickening the formula and went back to straight Neocate.

At this point E was almost 7 months old.  We had seen 2 different allergists at one of the county’s top children’s hospitals and no one had mentioned non-IgE allergies or FPIES.  However, we continued to collect data. I don’t know if our allergist was starting to think it might be FPIES, or if she was trying to rule out FPIES, or if it didn’t even cross her mind.  I don’t know what she was thinking because she didn’t tell me.  I’m just glad that I am a researcher.  Glad that I was able to look at the data and make decisions.  I think it was at this point that I decided that on top of the dairy (and maybe soy) allergy, E had non-IgE/FPIES allergies to rice and oats and maybe chicken.  I still didn’t totally understand what that meant but we added those foods to our list of allergens to avoid.

We found the zebra.  We learned how to take care of the zebra.  And E started to get better.  Finally.

March 2013