8

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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4

Coconut Conundrum

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When was the last time you were exposed to coconut?

I bet it was was within the past 24 hours.  Seriously.  It was in your shampoo, or your soap, or your tissues.  I had no idea that coconut is more pervasive than soy!  I have been driving myself crazy for the past week trying to find a coconut-free shampoo for E and I am ready to give up, which is really, really hard for me to do.

Let me back up a bit.  E has always had sensitive skin and eczema. I remember going in for a well visit when he was about 2 months old and mentioning that his baby acne seemed pretty bad.  The doctor’s response, “That’s not baby acne.”  He then promptly prescribed a topical steroid to treat moderate/severe eczema.  He also recommended we start moisturizing with Aquaphor.  Thus begun our thrice daily ritual of slathering the greasy ointment on his entire body.  He used to love his daily massages and I loved the connection I felt to him as I tickled him and watched his smiley face while giving them.  But his skin didn’t really get better.   When E was about 4 months old (right before he was diagnosed with the milk allergy), his cradle cap became infected and required antibiotics.  At that point the pediatrician recommended that we replace the all-natural moisturizing body wash/shampoo that we had been using his whole life with good old Dove bar soap.  She told us to wash his whole body, including his head (he didn’t have much hair at the time) every day with the Dove.  Thank goodness the skin cleared up and we went to an every-other-day bathing schedule (bath time is not my favorite) but we have continued to use the Dove.

Well now that he has “real” hair, the Dove soap isn’t working so well.  His hair is feeling coarse and doesn’t seem to be very clean, so we decided it might be time for real shampoo.  Over the past several months I’ve learned that oat is an ingredient in a lot of moisturizers and I have also learned to assume that soy is everywhere, so I started to read shampoo ingredients. Just to be clear, topical exposure to allergens isn’t usually a concern for FPIES. For the most part the food has to be ingested, which generally isn’t a concern for shampoo.  However, sometimes it seems that my son’s only goal while in the bathtub is to drink the bathwater.  You know, the gross, soapy, dirty water, in which he also often pees. That water is apparently more delicious to him than anything I’ll ever serve him in his highchair.  He will use any toy as a vessel to get that water into his mouth.  He’s really quite creative.  (Please tell me other children do this). So, I just figured it would be best if his shampoo didn’t contain any allergens.  I also had no idea how hard that would be.

First I went to the Vanicream website because I knew they made good quality hypoallergenic products for sensitive skin.  I hoped they made a shampoo. They did! The ingredients didn’t list any of E’s allergens.  But something made me double check the FAQs, where I saw this: “Some shampoo or cleanser ingredients may be made from coconuts.”   Ugh.  So I went back to the ingredients and looked again.  This time I noticed that it contained coco glucoside, which seemed like it could be connected to coconut.  After about a minute of googling it was confirmed – coco glucoside is a chemical derived from coconut.  This is when it occurred to me that much like milk has several synonyms, maybe I better figure out what types of chemicals are made from coconut, perhaps it was more than just coco glucoside.

Luckily, I quickly found a great blog, coconutallergy.blogspot.com, which included a post of all of the coconut-derived ingredients – THERE WERE 73!!!! And I thought it was annoying to have to be on the lookout for “casein” and “whey” in addition to “milk.”  How on earth was I supposed to know that Sodium Lauryl Sulfate was made from coconut, let alone 1,2 Octanediol, Cetearyl Alcohol, PEG -100, and the 69 other chemical names on the list?!

After a bit of frustration and panic, I took a deep breath.  Knowledge is power, right?  Now I had a list that I could check ingredients against and avoid these things.  So I went to diapers.com and searched “shampoo.”  I figured that was a good place to start.  I went down the list, one by one, reading the ingredients.  Some were easy to eliminate – they had oat or soy.  Some actually (thankfully) listed “coconut oil” in the ingredients.  Others required cross-referencing THE LIST.  It took me an entire night but I managed to eliminate all of them!  All 160 items that diapers.com found for me (ok, some were duplicates, but still!).  Each one contained an allergen, and it was often a coconut-derived ingredient. By the way, the all natural body wash we lovingly bathed our newborn in – contained soy, oat, and coconut!  Oh and the Dove contains THREE (!) coconut-derived ingredients.

AAAAAHHHH!!!!

Ok.  I was frustrated and confused. I closed my laptop.  I walked away from the research and pretty much decided to give up.  Here’s my rationalization as to why it’s ok to give up on trying to find a totally coconut-free shampoo.

First, one doesn’t seem to exist.  But I haven’t scoured every last corner of the internet or tried to make my own yet, so that wasn’t a good enough reason for me.

Second, I’m not really clear on what “coconut-dervived” means.  I tried to do some research but it hurt my head.  I barely survived organic chemistry and the explanations of how these chemicals were derived gave me horrible flash-backs. The best, most approachable explanation I saw basically said that these things started out from a coconut that was processed until it became this useful chemical.  There were also a lot of mentions of coconut oil.  Oil, in general, doesn’t contain (many) proteins (aka allergens).  So if it was actually derived from coconut oil, then we are talking about a chemical that is a very processed form of a non-allergic part of the coconut.  Doesn’t sound that scary.  (Disclaimer: I still don’t totally get it and a lot of what I just said is based on assumptions that I may have created to make myself feel better).  On the other hand, there are reports of people with coconut allergies reacting to these coconut-derived chemicals and we have decided to avoid all forms of the allergens (including oils) in hopes of increasing our chances of outgrowing the allergy. It just doesn’t seem possible in this case.

Third, and maybe most convincingly, he’s been using products containing coconut-derived  ingredients for most of his life.  His skin has improved and his eczema is controlled while using the Dove.  So, it is unlikely he will react to the shampoo.  We may never know if that exposure prevents him from outgrowing the allergy.

So, I made my decision.  I’m going to try Say Yes to Baby Carrots Shampoo + Body Wash.  From what I can see, it only has one coconut-derived ingredient and no indication of other allergens.  It got good reviews and I also liked the philosophy of the company.  I’m relieved to have found a product that contains a lot of natural ingredients but few allergens.  I’ll let you know how we like it and whether we see any indicate of a reaction.

Bath Time July 2013

Maybe now I’ll be more motivated to prevent him from drinking the bath water.  Any suggestions?