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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8 thoughts on “Out of the Blue – Acute FPIES Reactions!

  1. I am so thankful to have found this blog! My daughter was diagnosed a month ago with FPIES after a reaction to rice cereal that ended up with a trip to the ER. I am overwhelmed and terrified- every thing I am reading just makes it that much scarier, but while reading your blog, I almost feel relieved. I have been researching and researching on food trials and challenges, there is no answers but I feel like I am heading in the right direction. We just recently started solid food trials with the first being avocados and I have been so worried that we are not doing it right. After spending an hour reading your posts and your trials..I’ve realized that there is no right way… and I am just going to go with my gut. I am so grateful though to have found this and to know that your little one is happy and thriving and passing challenges!

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    • Thank you so much for your comment! It literally made me cry – This is the reason I write the blog! I want to share our story and let others know that you are not alone. You are doing the best that you can, trust in that. Good luck as you continue on your FPIES journey. Let me know if I can help in any way.

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  6. Thank you for writing this blog. It is so interesting to read about your journey with FPIES. one thing that stood out to me was that you mentioned that kids with allergies often refuse the foods that they react to. Jack is allergic to eggs yet he would enthusiastically eat them if i allowed him to. He only gets hives from them though so maybe it depends on the type of reaction.

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    • Thank you! The food rejection information is anecdotal, from my allergist’s experience. I haven’t seen any good data in the scientific literature but I’ll keep my eyes open. E rejected the eggs and coconut (but not until he started reacting to it). He never rejected the crab that he reacted to and also took the soy at his challenge (though that was shot into his mouth via syringe, so he didn’t have a chance to reject it). I can’t wait until he can tell me why he rejected the eggs and coconut. I wonder if he gets some feeling in his mouth. We just know so little about all this allergy stuff!

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