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Out of the Blue – Acute FPIES Reactions!

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After we eliminated grains from E’s diet (along with dairy and soy) things were great!  He had stopped vomiting, was gaining lots of weight (maybe too much), was sleeping well, and we were successfully introducing fruits, vegetables, legumes, and even meats.  The three of us had made it to his first birthday and celebrated with a big Curious George-inspired party and a safe cake made of coconut flour and lots of eggs.  Life was predictable, which is just the way I like it.  We were settling into a nice routine and starting to relax a little.

After the party we had a ton of bananas (I used bunches of bananas to anchor balloons for the centerpieces on the tables).  As they started to turn brown it occurred to me that I could turn them into coconut flour banana bread.    I found a recipe that contained a couple of new foods but I decided to make it anyway, with the intention of freezing it for when we were ready to do a trial. So I made two loaves.  They were just ok, but E wouldn’t know how good it could be so I hoped he would think they were delicious (I use this line of reasoning way too often).

Meanwhile, our allergist had given us the ok to start trying wheat.  About a week after his birthday, I gave him one piece of whole wheat rotini with his breakfast.  We didn’t notice any problems but wanted to take this trial nice and slow so the next morning I also gave him one piece of rotini with his breakfast.  We had a normal morning, he took a normal morning nap, and when he woke up it was time for lunch.  I can’t remember the circumstances but for some reason I didn’t have enough food to give him for lunch.  He ate some prepackaged diced mangoes and I felt like he should have something else.  I didn’t have anything to give him…except for the banana bread.  The new foods were unlikely to be allergens and it was right there, so I figured a small taste wouldn’t hurt.  Interestingly, E didn’t want to eat it.  I was perplexed.  How could he not be interested in a sweet, cake-like version of bananas? I practically forced him to eat a few bites, thinking that he was just thrown off by a new texture.  It was clear that he wasn’t enjoying it, so I cleaned up and moved on with our afternoon.  I had a big outing planned for that day – we were going to buy him his first real pair of sneakers and make quick stop at Whole Foods.

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How cool are those shoes?

I loaded him into the car and we were off to the children’s shoe store.  He was great and we scored an awesome pair of yellow Adidas that were on clearance.  Next was Whole Foods for some E-safe foods.  Honestly, it was a fairly big outing for us.  We still weren’t getting out much, so two stops in one window of wakefulness was pushing it.  By the end of the shopping trip I knew I was approaching nap time, so I was preoccupied with getting him into the car and getting home before he passed out in the car and all chances of a real nap were destroyed.  As I lifted him into the carseat, he spit up a little.  This was weird, I couldn’t remember the last time he had spit up. But it was just a tiny bit, it was actually more like bad reflux.  So I strapped him in and started the car.  We were barely out of the parking space and he really threw up.  I pulled into another space and got out of the car to check on him.  He seemed fine (except for the vomit on his shirt).  I was a bit concerned, this was unusual.  But now I really wanted to get home so I wiped him up and left the parking lot.

We made it to the first major intersection.  I was waiting for the green arrow to make a left turn, was the first car at the light with a growing line of cars behind me, and E threw up again.  And he started choking.  I couldn’t tell if he was having trouble breathing or not.  I pulled over as soon as I could.  I turned around to look at him and determined that his breathing was fine.  The carseat was at an angle that I think prevented him from getting the vomit out.  He was choking on his own vomit.  This was really sad and upsetting, but not as upsetting as the thought of his throat closing. He seemed ok so I kept driving.  He threw up again.  And now I was driving through a farm! The road was narrow, there was no place to pull over, and there were a bunch of cars behind me.  I was panicking.  When I finally pulled over, he had stopped vomiting and seemed ok.  I was really shaken up.  I tried taking some deep breaths and wrap my head around what was going on.  I was pretty sure this was an allergic reaction.  Did I need to use the epi-pen? What was he reacting too? Should I go the hospital?  It was all so stressful for me but E handled it like a champ.  He didn’t seem to be very distressed and wasn’t struggling to breathe so I decided to continue home, where I could safely get him out of the car and better assess the situation.

We finally made it home.  As I pulled into the driveway he started vomiting again.  This time I was able to get to him fast enough, rip him out of his carseat and stood in the driveway holding him so that he could get all of the vomit out and know that I was there for him.  It had been a while since I held my baby close while he puked all over both of us. It wasn’t necessarily something I had missed but I so relieved to have him in my arms that I didn’t even care.  He was relatively calm but really sleepy.  I was a mess – emotionally and physically.

I took E inside, stripped the pukey clothes off of him and noticed that his eczema was flaring.  By this point it was quite clear to me that this was reaction.  He had stopped vomiting and was breathing ok, so I didn’t think I needed to use the epi-pen, but I did give him a dose of Benadryl, put fresh clothes on him, and put him down for his nap.  He fell asleep right away.   Then I got changed, cleaned the carseat, left a message for the allergist, and tried to process what had just happened (all while staring at him on the video monitor to make sure he remained ok).

What was the cause of the reaction? We were in the middle of a wheat trial, but it had been about 6 hours since he had wheat.  And it was the same dose as yesterday – he hadn’t had any problems yesterday.  Could it be a reaction so long after the exposure?  Then there was the banana bread.  I went back to the recipe: coconut flour, bananas, eggs, Earth Balance, honey, sea salt, cinnamon, baking soda, and vanilla.  The only new things were cinnamon and honey.  Everything else had been passed in 4-7 day food trials.  When the allergist’s nurse returned my call it was decided that it must have been a delayed reaction to the wheat.  The likelihood of reactions to cinnamon or honey were low.  We also knew that he had trouble with other grains so there was a higher likelihood that all grains were going to be triggers (105).  She was also a little suspect of the coconut flour (despite the fact that he had coconut milk and coconut flour many times with no problems) so she recommended holding off on all grains for a while and doing a separate trial of coconut just to be sure.

I wasn’t completely satisfied with this answer.  It didn’t make sense that the reaction was so long after the wheat.  I remembered back to his last skin prick tests and a very small reaction to egg.  It was so small that it wasn’t considered positive, but it was enough for the nurse to mention it.  Could he be allergic to eggs even after eating them in his birthday cake?  Or was it something else?  Maybe he had been exposed to something else while we were at the shoe store or Whole Foods.  I just didn’t know.  I was still shaken up from the drive home and I continued to beat myself up for confounding the wheat trial.  I was also sad that wheat was off the table for a while.  But E woke up from his nap as though nothing had happened.  He seemed fine and we moved on, avoiding wheat and coconut.

A couple of weeks later we started an almond trial using almond milk.  E was doing great.  He drank the almond milk with no problems and showed no sign of a reaction.  Over about 5 days we worked up to replacing one of his formula cups with almond milk, which was about 6 ounces.  I wanted to give him more but didn’t want him to miss out on the nutrients in the formula and didn’t think he would drink much more milk on top of the formula.  So I decided to add almond flour to the trial.  When I had been searching for coconut flour banana bread, I had found a couple of recipes for almond flour banana bread so I decided to try one.  The taste and texture were much better than the coconut flour version so Jonathan and I were really excited at the prospect of a better grain-free flour.

However, E was not impressed.  I gave him the banana bread and almond milk for breakfast on a Sunday morning.  He played with the bread, put some in his mouth, and spit it out.  Weird.  I thought for sure he would love it.  Maybe he remembered that the last time he had banana bread he got sick? It seemed unlikely, he had gotten sick hours after eating the bread.  Maybe he just didn’t like his bananas in bread form.  It didn’t really matter.  I needed him to eat it so I could move on with the trial.  I also didn’t have a lot of time to spend on breakfast because we were going to a family reunion picnic that day and needed to finish getting ready and get into the car.  I practically shoved it down his throat.  We cleaned up from breakfast, dressed him in an adorable little outfit and strapped him into the car around nap time so that he could sleep on the way to the picnic.

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My wonderful husband even took the time to iron E’s tiny shirt for the picnic.

He surprised us by waking from his nap early and unhappily.  We had just gotten off of the highway and were about 10 minutes from the picnic when the vomit started.  It was a little bit of de ja vu, but this time wasn’t as bad – mostly because there were two of us and I wasn’t driving.  Jonathan was able to quickly pull into a parking lot and we got to him much faster than the time before.  His breakfast hadn’t included diced fruit so he didn’t seem to have as much trouble getting the vomit out (it was actually quite projectile) and so there wasn’t any choking.  He seemed fine after he threw up.  Luckily, we were still in the habit of traveling with an extra set of clothes for E.  Unfortunately the backup outfit wasn’t as fashionable and I wasn’t as prepared – my white shirt now had some unintentional “decoration.”  Jonathan and I were pretty shaken up by the time we got to the picnic but E acted like nothing had happened.  His eczema flared again so we gave him some Benadryl and tried to go about our day.

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E had a blast while we did our best to clean his carseat with baby wipes.  
Does this look like a little boy who just coated the backseat in vomit?

I tried my best to enjoy the picnic but I was already playing detective.  Maybe it wasn’t a reaction.  Maybe he was carsick.  That didn’t make sense though, we had taken other, longer car trips without any problems.  The vomiting and the eczema, along with the timing (about 2 1/2 hours after eating) indicated a reaction, but to what?.  Was it an almond fail? Was it something else?  Cooked bananas were a common denominator between this time and last time, but he ate a raw banana almost every day with no problem.  It would be almost unheard of for a cooked food to  cause a problem when a raw food didn’t (though it is not as unusual for it to be the other way around).  I went back to the recipe.  There were other similarities: eggs, baking soda, Earth Balance, sea salt, and vanilla.  I substituted the honey for sugar this time since I still wasn’t positive that the honey hadn’t been a problem last time.  All of the ingredients were in his birthday cake that he had enjoyed without any problems.  Ugh.  It was looking like an almond fail.  But again my gut said maybe it’s the eggs…

When I spoke to E’s allergist the next day, she wasn’t convinced it was the almonds either.  She thought that it was more likely that he was reacting to eggs on both occasions.  It was significant to her that he didn’t want to eat either version of banana bread.  She said that kids who are allergic to eggs tend to reject them.  This can happen with all food but her experience had demonstrated that it was almost always the case with eggs.  They were a common denominator in both banana breads and the most likely allergen in both.  She didn’t know why he had done ok with his birthday cake trial but said that sometimes it takes several exposures before a reaction occurs.  I had already been thinking it could be the eggs so I was glad we were on the same page.

We went back to the drawing board.  We did pure food trials of wheat and almonds, which E passed beautifully.  Much to my surprise he failed the controlled trial of coconut milk.  It didn’t make sense because he had been exposed to coconut on multiple occasions with no sign of reaction.  But the fail was clear.  I gave him a cup of coconut milk in the morning and he wasn’t interested.  He managed to drink maybe an ounce before he pushed it away.  When I gave it back to him he tried to hide it.  He was clearly not going to drink it.  By this point I knew that he somehow knows something we don’t when it comes to his allergens, so I didn’t push it.  About 2 1/2 hours later he was vomiting.

So within about two months E had his first three acute FPIES reactions.  Completely out of the blue and to foods that we considered to be safe.  These reactions were a game changer to me.  They were terrifying and they made us question everything we thought we knew.  I later learned that they were pretty much “classic” FPIES reactions, which typically occur 1-3 hours after ingesting the food and consist of profuse vomiting that is sometimes followed by lethargy and ashen color.  Sometimes diarrhea occurs within 2-10 hours (4, 111).  Like E, most children recover fairly quickly, within a couple of hours of the reaction.  However, up to 20% of reactions lead to shock that requires IV fluids (111).  Epinephrine and antihistamines are not generally helpful for FPIES reactions (111), so I don’t give him Benadryl anymore.  I learned some other important lessons: FPIES is completely unpredictable, reactions hit when you least expect them, it is possible to react to food after a number of exposures, food trials had to be treated like controlled experiments, and that I hope I never have to deal with an anaphylactic reaction (the FPIES ones are scary enough, thank you).  Most importantly, these reactions removed any doubt that E had FPIES.  And the list of allergens was getting longer…

 

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Hooray for a Successful Easter (and Peanut Butter Eggs)!

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This weekend was crazy-busy for us and I’m exhausted.  But every last detail was worthwhile! I am so excited and can’t wait to tell you about how well everything went!

This year we hosted Easter for the first time, which was an honor and a little stressful.  My great-aunt has hosted  an Easter open house for nearly 60 years but was unable to do it this year, so I offered to have her traditional party at our house.  This was great because it gave me some control over the menu and we had all of E’s toys which were great distractions from all the food (it also gave me a good reason to do some intense spring cleaning).  We stuck pretty much with the traditional menu – kielbasa, ham, potato salad, and pasta salad.  There were some allergens on the menu but we decided not to mess too much with tradition.  We felt confident that we would be able to keep E away from those foods and decided to make a special meal for him.  It turns out that he doesn’t really care if he’s eating what everyone else is eating, as long as he’s eating when everyone else is eating.  I tend to get caught up with making a safe version of the traditional holiday meal for E, which causes me more stress and then he may or may not even eat it.  Luckily my husband was able to step in and prevent me from embarking on crazy recipes or rushed food trials this time.  We decided to keep it simple and went with tried and true favorites.  After all, what toddler wouldn’t be thrilled with an Easter hot dog?  

However, as you may recall, I was determined that we were going to pass down some Easter traditions.  Last Easter E was only about 7 months old and we were still dealing with the end of chronic FPIES so we weren’t feeling up to dyeing eggs.  I was a little torn about it this year too.  I figured it could either way – he could totally love it or not be interested and make a huge mess.  And then there are the eggs – one of E’s allergens.  Dyeing eggs doesn’t really require eating the eggs, but the kid still puts everything in his mouth!  And what was I going to do with a bunch of hardboiled eggs? Eggs were fairly easy for us to eliminate from the house after we found out E was allergic – my husband and I never ate a ton of eggs so it wasn’t hard to just not have them.  I didn’t need to start now.  I wondered if I could find something else to dye, so I started scouring the internet.  I found a company that makes ceramic dyeable eggs, but they were a little expensive and I was afraid they were too fragile to give a one-year-old who doesn’t have a gentle bone in his body.

I was ready to give up when a friend and fellow FPIES mom told me about plastic dyeable eggs that Walmart was selling.  I was so excited – completely allergy-safe and rough-little-boy-friendly.  It’s like they were made for E!  I will generally go out of my way to avoid Walmart, but I’ll do anything for my son, so off to Walmart I went.

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We finally got around to dying the eggs on Saturday afternoon and it was a blast!  E loved it!  I also think I will seriously consider using plastic eggs forever.  He was able to throw the eggs into the dye cup, smash them down with egg holder, and drop them on the floor without having to worry about any broken eggshells.  And the eggs were beautiful!  The sentimentalist in me is also excited to save one of E’s first dyed Easter eggs.

IMG_2940Next up was the Easter candy.  So after a day of cleaning, egg dyeing, last minute Easter outfit shopping, and cooking, I started to make candy.  I was glad I had done a test run of the giant chocolate bunny and smaller chocolate candies that I made out of enjoy life chocolate chips.  That was easy.  But I also decided to make allergen-free peanut butter eggs based on a recipe I came across on Pinterest.  These were fairly easy, but a bit time consuming and I started around 10pm (which is past my bedtime, I know I’m pretty lame).

The results were totally worth it! The peanut butter eggs are delicious! Seriously.  Better than than Reese’s.  There’s about 5 ingredients in them – so they are pure yumminess!  But even better than the yum-factor is the safe-factor.  E can eat them and he loves them!  I love having a safe snack for him and watching him enjoy the indulgence.  It’s also nice that I can treat myself to one without hiding in the kitchen and going through an entire decontamination procedure afterward.

On Easter morning, the Easter Bunny left a basket that contained the safe chocolate bunny, a few smaller chocolates and two peanut butter eggs, along with a Curious George lunchbox, safe crayons, a new book, and a couple small toy cars.  E loves cars and Curious George, so I didn’t know which was going to be the bigger hit in the basket.  Turns out it was the peanut butter eggs!  He didn’t even hesitate – he grabbed one and took a bite as soon as he saw them! I thought my heart was going to burst with pride, love, and joy!  He was so excited and happy to see a candy that he could eat.  I loved that he loved them!

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He didn’t waste any time digging into the candy!

We set out some small chocolates and peanut butter eggs on the coffee table when our guests arrived.  Everyone raved about them.  I love finding things that are safe for E that other people can also enjoy.  It was also so exciting that E could walk up to the coffee table and indulge in a little treat.  I guess it’s a feeling only an allergy-parent can understand.  I spend so much of my time anxious about E being exposed to allergens and preventing him from eating things that other people take for granted.  Being able sit back and relax as I was watching him enjoy a safe treat was the best Easter gift I could imagine!

We had a wonderful Easter surrounded by family and sharing traditions with our little boy.    I hope you also had a wonderful and safe Easter! I know that it’s a bit late, but below is the adapted recipe for safe peanut butter eggs.  I will definitely be making these year-round (maybe as just balls or other shapes if I’m feeling really ambitious) and I hope you enjoy them too!

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In all of the craziness of this weekend I forgot to get a picture of just the peanut butter eggs.

Peanut-Butter Eggs: Dairy-Free, Soy-Free, Egg-Free, Grain-Free

Ingredients:

  • 1 cup Peanut Butter (I used Crazy Richard’s 100% Natural Creamy Peanut Butter – I’d assume you could use any safe nut/seed butter)
  • 1/4 cup Soy-Free Earth Balance Natural Buttery Spread
  • 1 tsp Vanilla
  • 1 1/2 cup Powdered Sugar
  • 10 oz package Enjoy Life Mini Chips
  • 1 tbsp canola oil (or other safe oil)

Directions:

  1. Melt peanut butter and Earth Balance for 1 minute in microwave.
  2. Stir until blended.
  3. Add vanilla and powdered sugar and mix well.
  4. Scoop out about a tablespoon of the mixture and shape into an egg shape.
  5. Place on parchment paper lined sheet and place in freezer for 15 minutes.
  6. Mix the mini chips with canola oil.
  7. Melt the mini chips in microwave by heating for 30 seconds then stirring and repeating process until it is melted and smooth. (This should take about 1 1/2 minutes)
  8. Using a fork, dip egg into chocolate and flip to cover completely. Lift with fork and gently tap on edge of the bowl allowing excess chocolate to drip off.
  9. Place back on parchment paper.
  10. Refrigerate 10 minutes until chocolate has set

If you have the freezer space, I recommend freezing in two batches. This will allow you to get started with the freezing process while you shape the remainder.  It will also keep half frozen while you are dipping the other half in chocolate, which is easier to do when they are more solid.

The original recipe is here: http://www.raininghotcoupons.com/chocolate-covered-peanut-butter-eggs/.  I removed the allergens and also made them much smaller.  
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Our beautiful dyed plastic eggs! 
Happy Easter!