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.

6

Food Trials: Variations on a Theme

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We’ve been living with FPIES for almost two years, pretty much my son’s entire life. During that time I’ve gotten a little more comfortable with many things, such as leaving the house without showering, sticking my finger in a potentially full diaper, and conducting food trials.

When it first became clear to me that we needed to be more systematic about giving E new food, I scoured the literature and the internet trying to find the best way to introduce a new food to a little boy with a great appetite and a growing number of allergies.  I found pretty much nothing.  The literature in the field is way to new to address such a specific aspect of FPIES with the detail that I was seeking. I quickly learned that every FPIES parent has their own process for food trials and that every FPIES kiddo is so different that individualized approaches are really best.  One thing that I didn’t realize at the time was that even within the same child the approach to food trials changes over time.  As you learn more about the types of triggers that your chid has and as you come to accept FPIES as something that you and your family is living with, not against, your approach might change.  Our method of trying new foods has certainly evolved since we learned E had food allergies. I wanted to share some of this process and some of the variations that we use to demonstrate the truly experimental and ever-changing nature of the FPIES food trial.  Also, to make a case for the fact that there is no right or wrong way to do it.

First, I think it’s important to remember the purpose of the food trial.  I think we get lost in the details and start to fetishize the trial so much that we forget why we do it and actually give it more power than it deserves.  The purpose of the food trial is to see if a child is allergic to a particular food.  The trial itself doesn’t  determine whether or not there is an allergy. It’s just the “test” to find out.  It’s the “scratch test of FPIES.” This might seem obvious but it’s so easily forgotten. I think all FPIES parents (myself included) fall into a trap of believing that our kids’ chances of passing are better if we do a trial “the right way.”  That just isn’t the case. If your child is allergic to the food, he will react to it. Nothing you do makes him more or less allergic, to a point. (That being said, there is a school of thought that suggests you might have a better chance of passing if you wait longer to try certain foods or avoid a food for a while before trialling again.  I’m really talking about the step after you decided that your child is ready to try a food).  

Actually, the point of a food trial is to cause a reaction. During a trial, you should do all that you can to be sure that if your child is allergic to a food you’ll know it. You want to see the reaction when you are ready for it and at a low dose, so that (theoretically) the reaction is as predictable and manageable as possible. You also want to have a reaction during the period of time when there is only one new food, so you know what caused the reaction.

The thing that is most important about food trials is your child’s history – when they typically react (the amount of time after the food is given and the number of exposures that are typically needed before you see a reaction), how they react (what are the symptoms, how severe are they), and what types of foods your child reacts to.  It’s also important to be realistic about your schedule and the resources you have available.  Finally, you have to be honest with yourself about how important it is for you to be able to definitively say a food is safe (or not safe).

It took us a long time to figure out the answers to all of these questions and, therefore, the best way to introduce E to new foods.  We eventually developed the strict 15-day food trial protocol that I wrote about a couple of weeks ago.  During this process we start with a low dose, increasing it slowly over about 5 days.  We then give an appropriate serving size for another 4 days.  After about 9 days of exposure to the food we take a 3 day break.  Then we reintroduce the food for about 4 more days, the last two of which are at “overdose” amounts.  During this strict trial protocol we are very careful to not introduce any other new foods.  I truly believe this is the best way to get the cleanest data.  If E is allergic to a food, I am sure he will react during this trial and we will know for sure which food is the culprit.

But this protocol takes a long time.  Over two weeks!  That means that if we are always doing a trial with no breaks (for things like colds or recovery from a fail or holidays or mommy’s sanity), E could potentially gain 24 new foods a year.  Sure, it seems like a lot but think about all of the food that you eat in a day, and all of the ingredients in a single (normal) recipe.  Suddenly 24 isn’t so much, not to mention the fact that we are definitely going to take breaks (for my sanity if nothing else).

So, we don’t always do this strict food trial protocol (*gasp*).  It’s almost blasphemous in the FPIES world to admit that you don’t do strict food trials.  But the one known when it comes to FPIES is that all kiddos with FPIES and all FPIES families are different.  I couldn’t wake up every day with the mindset of entering into battle – it’s exhausting.  I had to find a way to work FPIES into our lives and live with it, while still keeping E safe. So I started to make some changes.

Oddly, our first “messy trials” followed E’s failed soy challenge.  After such a dramatic fail, you’d think I’d hunker down and be more careful, not less.   In a way I kind of was being more careful despite the “messiness” of my new version of food trials.  The attending allergist at the challenge suggested that we trial a food for 12 days, not the 7 we had been doing up to that point.  When I got home my mind was spinning – I was tired and stressed.  And then I panicked that the foods that we thought were safe for E might not be because we didn’t trial them long enough.  I couldn’t say for sure that every food on his safe list had been eaten at least 12 times.  In the haze of stress and uncertainty I decided that we must retrial every food that E might not have had 12 times.  At some point I had the realization that it would take weeks to get through all of the food and then we would be right we started.  I didn’t want to go backwards so I developed a new protocol for these foods that were probably safe anyway.  

I referred to these as “messy food trials” because the thing that I eliminated was the one food at a time rule.  That meant that if there was a reaction, the data it provided would be messy. If I was giving more than one food at time I wouldn’t be able to say for sure which food caused the reaction.  I essentially staggered the start of each food but had multiple 12-day trials going at the same time.  It was a lot to keep track of and I actually had to rely on my calendar to keep it all straight.  At this point we hadn’t introduced the break into our trials so that made it easier.  As you can see, last December was kind of a stressful month.

My original method for keeping track of our overlapping “messy food trials”

Once we retrialed all of our previous safe foods we went back to perfecting our strict food trial protocol.  We did that for a while, added more and more safes and went months without any reaction.  Then our allergist gave us the ok to stop doing a full food trial for fruits and vegetables!  E had passed all fruits and veggies without any problems (unless you count coconut as a fruit, which is up for debate) and she felt confident that he wasn’t going to react to any.  I didn’t feel so confident.  The food trial had become a little like my security blanket.  After this crazy process I knew E was going to be ok whenever he had the food again.  I needed that – I don’t do well with uncertainty at all.  So, much to my husband’s dismay, I ignored her and continued to trial all foods, including fruits and vegetables.  I did concede, however, that a “messy food trial” would be ok for those foods (again, because they were probably safe). I went back to all of the questions above that outline a food trial and I decided that the most important thing for us was to be able to say that E had eaten a food at least 12 times.  I decided to simplify the system and started a low-tech hashmark system on post-it notes inside our kitchen cabinets.  Every time we started a new food, I added it to list and kept track of exposures using hashmarks.  I still continued with our protocol, but was sometimes willing to overlap trials of new fruits and vegetables.  At some point we also added in the break, which I kept track of mentally.

 

Our Post-It Note System of Tracking Trials

E did great – look at all those passes (and this is only some of them)! His allergist was right! He has passed all fruits and vegetables with no problem.  E hasn’t had a reaction since his crab trail in April.  That’s 7 months!!  Is it possible that we’ve found all of his triggers?  Maybe, developing new triggers after two years old is not very common (though not unheard of).  At his last appointment with the allergist we were told that we don’t have to trial every new food anymore!  That’s a pretty crazy thing to wrap your head around.  And, again, the food trial protocol is my security blanket.

Now I trial foods on a case by case basis, using the questions at the beginning of this post as a guide.  I know that E typically reacts about 2-3 hours after he eats the trigger, usually after about 9 exposures and often after a break in the exposures.   That means 2-3 hours after a new food I am on high alert, so I usually only do new foods at breakfast and lunchtime.  Trying a new food at dinner interferes with bedtime and depending on how late dinner is,  the reaction window may be after he’s down for the night (bedtime is pretty sacred at our house so I rarely do anything that can interfere).  I continue to keep track of foods using my post-it note system.  That way I can know how many exposures he’s had and how likely a reaction is.  We are lucky because E’s reactions are typically not very severe.  He has never had to be hospitalized following a reaction and I am the first to admit that he recovers faster than me.  His crab reaction was even after an “overdose” amount and it wasn’t so bad.  So, I typically don’t worry about starting at a super-low dose anymore.   The thing that is the hardest to let go of is the belief that the importance of all foods is equal.  For example, if I use thyme in one recipe, all other ingredients in the recipe are safe, and E does not have any other herb (or vegetable for that matter) triggers, it isn’t really that important to know for sure that thyme is safe.  I might just go ahead and serve the recipe without doing an all out thyme trial. I’ve also started trialling entire recipes.  For instance, if there are several new foods in one recipe, I’ll go ahead and give the entire recipe and track it as though it were one food.  I also don’t worry about getting through a whole trial at once.  I’ll give E the food when we have it until it runs out and then just give it to him again next time I make it, which might be several weeks (or longer) later.  We eat chili a lot in the winter but it still might be spring before he has all 12 exposures.

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My chili recipe has several new but probably safe ingredients so I am “trialling” the whole recipe.

Of course, I also allow myself to be ok with a “messy” reaction.  This method will not give perfectly clean data.  If there is a reaction I might not be able to tell you for sure what caused it.  Then I’ll have to decide if I want just avoid all of the new foods that it can possibly be or if I want to go back and do more systematic trials.  Luckily, we haven’t had to deal with that yet.   Also, when we go back to retry our known triggers you better believe it will be the strictest version of our strict trial protocol!

It was really strange at first but I love not being afraid of every new food! I now read ingredient lists looking only for our triggers (there are 7 so it’s still not an easy task).  If there is a new food I just proceed with caution, but I proceed, something that I didn’t do a couple of months ago.

IMG_3614I love seeing this boy with a full plate of food! (So much that he even required 2 utensils!)

Wow, this turned into a long post.  I hope it’s helpful to see how food trials have changed for our family and I hope some of our process might give you some things to think about as you develop your own food trial protocols.  Please know that this is a process that worked for us at this point in our FPIES journey.  We can relax now that we have a handle on what E reacts to and how he reacts.  He also has a ton of safe foods so there isn’t as much importance placed on each trial.  Just remember to do what works for your family and embrace it – no matter how messy it is.  If you are early in the FPIES process this probably sounds crazy to you!  You’ll get to this point eventually, just hang in there and do what works for you one day at time.

6

First Oral Food Challenge – Clarity and Confusion

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After E’s acute reactions to egg and coconut in September and October 2013, things calmed down again. We were trying and passing new foods at home and everything was going well.  We felt like we were finally getting the hang of this whole FPIES thing.

In fact, E was doing so well that at his allergist appointment in November we decided to start trying some of the foods he had been avoiding since his days of chronic FPIES. His allergist suggested we start with soy and rice. These were both on the “maybe/probably” list.  E never had a clear acute reaction to them but they were likely culprits to his chronic FPIES symptoms.  Because of the high risk of reaction to these foods, his allergist wanted them to be tried in an outpatient clinic, as an oral food challenge (as opposed to the at home food trials we had been conducting).

Oral food challenges are a controlled way to administer a food that may cause an allergic reaction.  They are conducted in a hospital (usually outpatient) or clinic setting in which there are trained healthcare providers that are prepared to respond in case there is a severe reaction and there is a need for emergency intervention.  Challenges are used for both IgE and non-IgE allergies to initially diagnose the allergies and to determine if the allergy has been outgrown.

The idea of food challenges was both exciting and terrifying. The challenges gave us an opportunity to take something off of E’s allergen list but there was also a distinct chance that we would be feeding him a food to which he would react.  The scientist in me wanted to do the test, more data is always better (even if it doesn’t support your hypothesis). The mom in me didn’t want to take any chances and would do anything to protect her son.

The scientist won and I scheduled the soy and rice challenges. To my surprise, they had an opening the next week and the next one wasn’t until February (over 2 months away). I jumped on the opportunity to get it over with, I mean get the answers quickly and scheduled the soy challenge for the Monday after Thanksgiving, despite the fact that Jonathan was going to be away on business.

Honestly we expected to pass soy.  It was never really clear that soy was an allergen.  When E was only a couple of months old we briefly switched him to a soy formula.  His chronic FPIES symptoms didn’t change during that time but he did become extremely constipated so we stopped the soy after only a couple of days, maybe a week.  To the best of our knowledge he hadn’t been exposed to soy at any other time because his allergist recommended that we avoid it just in case, given the high incidence of kids with both milk and soy FPIES as well as his positive patch test to soy.  We knew that it was possible that he could be allergic to soy but were hopeful that we had been avoiding it as a precaution only.  Besides, he passed chicken without a problem, despite the positive patch test.  Nevertheless, I wasn’t going to take E to this challenge alone.  Thankfully my wonderful sister was able to accompany me while Jonathan headed off to Tennessee to meet with a client.

The Children’s Hospital of Philadelphia (CHOP) has a great website that outlines what a food challenge is and the procedures involved for both FPIES and IgE allergies (which have slightly different protocols).  Basically, we were told to bring 32 oz of clear fluids, lunch for E, myself and my sister, a change of clothes for everyone, and toys or other distractions plus the soy milk that we were going to use for the challenge.  E was only allowed clear fluids after midnight the night before.  This caused us a little bit of stress because E didn’t really have any safe clear fluids, other than water.  We spent the weekend before the challenge scrambling to come up with some clear fluids that we could take.  He had been eating applesauce with no problem for months so we assumed he would do ok with apple juice.  He hated it.  Refused to drink it – full strength or watered down to every imaginable concentration.  Apple juice was a no-go.  On a whim, we tried Jell-O.  Also a no-go.  I’m pretty sure E is not a huge fan of sweet foods, probably because he never has them.  It’s most parents’ dream but we were a little concerned that he was going to be starving at the challenge and that water wasn’t going to cut it.  So we took the apple juice anyway, just in case.  For lunch I took the tried and true applesauce, Corn Chex, and a banana, things I knew he could safely eat and it would be a little taste of normal on a very strange day.  The change of clothes was necessary in case he failed the trail and covered us all in vomit. My sister and I both bought E some new toys to be a distraction.  We also had an iPad, with Curious George and Sesame Street available on Netflix we figured were set.

My sister spent the night before the challenge at our house because we had to be at the clinic at 7:30 am and the and it was about 45 minutes away.  That morning went like clockwork.  My sister and I got dressed, loaded up the car, and got some coffee and breakfast.  When it was time to go I picked E up from the crib (he was just starting to stir), quickly changed his diaper, put a coat on him, and carried him directly to the car.  He was somewhat awake but still quite drowsy for the car ride.  This was my plan, the more tired he was, the less likely he was to realize he was hungry and we were way off our routine.

We got to the clinic and checked in and were taken to a room with another little boy.  Thankfully, we were later moved to our own room, which was great.  The rooms had recliners, not hospital beds, which I think is preferable for a daytime visit.  It also made it seem more like a place to hang out, than a doctor’s office, which was emotionally helpful.  The chairs each had their own TV and all of necessary hospital accouterments (blood pressure cuffs, IV stands, gasses, etc.).  We met the nurse that we was assigned to us for the day and the attending allergist, whom we had never met before.  The nurse took E’s vitals.  She had some difficulty getting the blood pressure, which increased my blood pressure a bit, but everyone was so great and E was such a trooper that it wasn’t too bad.

Next we had to wait for the IV Team.  The clinic’s protocol is that all FPIES patients get an IV prior to the challenge.  This is because severe FPIES reactions sometimes result in dehydration that requires quickly administering IV fluids.  During a reaction everyone is rushed and stressed and the IV is harder to place.  It is also harder to place when blood pressure is low or the patient is dehydrated, which could occur fairly quickly during a severe reaction.  So they place the IV just in case.  Because of E’s age (he was only 15 months at the time), they called the IV Team, who are more experienced because their only job is placing IVs, they do it all day, every day.   This sounded like a great plan but it took the team a while to get to the room, and the challenge couldn’t start until they got there.  While we were waiting for the team, his nurse strapped warm packs to both of E’s arms, which helps to make the veins more accessible.  At some point it occurred to me that he hadn’t had anything to eat or drink yet and I got him to drink a little water.  He was so brave.  He was obviously confused but took it all in stride.

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Waiting for the IV team.

While we were waiting for the IV team the attending allergist asked some questions about E’s history.  I was familiar with the reputation of this allergist as he had been practicing in the health system for quite a while and I was looking forward to hearing another expert’s opinions on E’s symptoms and history.  Within minutes it was quite clear to me that he had a lot experience dealing with food allergies and had some definite opinions about how they should be treated.  I was impressed that he took a thorough history and didn’t rely only on E’s medical chart for information.  However, his questions started to seem a little like an interrogation.  He wanted to know how many days E had consumed soy and how much each day.  He was not pleased that I wasn’t able to answer these questions with certainty.  Remember, he tried the soy formula when we first started to realize there was a problem, at that point it didn’t even occur to us that everything E ingested had to be treated like a controlled experiment, we were just trying to feed our son.  The doctor also made it clear that he felt that E was too young for a challenge and that it was too soon after his last exposure to conduct a challenge (it had been about a year).

Did I mention that this was already an incredibly stressful day?  I was so nervous and the doctor was not helping.  I had already psyched myself up for the challenge and I was so afraid that after all this he was going to cancel the challenge.  My sister later informed me that she thought I might cry.  Instead, I took a deep breath and explained to the doctor that I was quite familiar with how to do a controlled study and understood the impacts of confounds.   I again told him why I didn’t do a controlled food trial for soy a year ago, months before anyone even acknowledged we were dealing with a food allergy and when I didn’t even know what FPIES was.  For good measure, I also mentioned that I was Ph.D. candidate.  Interestingly he slightly changed his tone after that.  At one point as he was explaining something to me he stopped and said, “Wait, you’re different so let me explain it this way…”  I’m not sure what that says about him and how he might treat the average patient, but it worked for me so I gave him brownie points for that one.  It allowed me to stop feeling bad about not being a good scientist a year ago and channel all of my energy toward getting my son through this day.  And trust me, I needed all the resources I could muster.

When the IV team arrived, E was placed on a stretcher and surrounded by about 5 people who’s only job was to hold him down.  I got to be one of these people, which was important to keep him calm, but heartbreaking for me. I can only imagine how scary this was.  Of course he got upset and cried through most of the procedure.  One of the nurses told him that he was almost all down, so he started crying “all done, all done.”  It was so sad.  Luckily, the IV was placed fairly easily and quickly.  Then it had to be taped up and covered up so he couldn’t play with it.  He actually ignored it the rest of the day, it was as though he forgot it was there, which is hard to believe.  I’m so lucky to have a flexible little boy!

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By now it was after 9 am (we had been at the hospital for almost 2 hours) and we were finally ready to start the challenge.  The nurse used a syringe to shoot 10 ml of soy milk directly into E’s mouth.  Thankfully, he drank it with no problem and then we waited.  After about 20 minutes his vitals were checked.  Everything looked good so he was given another 20 ml of soy milk, which is about an ounce total.  We did our best to keep him entertained with books, trucks, and TV shows. His vitals were checked every 20 minutes.  After about an hour the nurse gave E permission to eat.  He hadn’t really complained about not eating (I think he was too confused by the events of the day) but he inhaled his lunch!  After lunch it was nap time.  I held E in the reclined chair and played the lullabies we always play at nap time to try to get him to fall asleep.  It took a little longer than usually but he finally passed out for a little while.

soy before the fail

At about 2 hours after the last dose of soy, the doctor checked in.  I mentioned that he seemed to be doing ok and was finally sleeping.  He used that opportunity to educate me about FPIES.  He explained that if a child eats a food for 12 days without a reaction, he will not have a reaction.  He also explained that if very strict avoidance was practiced and the child had absolutely no exposure to a food for 18 months then the allergy would be outgrown.  I listened intently but recognized that I had never heard such absolutes related to FPIES (or any allergies) and realized that he wasn’t really citing any literature, but his own experience.  Of course, I had also formed my own opinions about this doctor and his approach to patients so I decided to take in all the information but not make any changes to our treatment plan.  It also made me realize that I wasn’t as up on the literature as I wish I was and made a mental note to start reading more.

About half an hour later E started to stir and the nurse came in to check his vitals.  We talked about how everything still looked good and we almost out of the window for his typical reactions.  Just as I was about to let out a little sigh of relief, E started to projectile vomit.

I think he vomited two or three times, but in rapid succession.  As upsetting as the fail and the vomiting was, it actually wasn’t as bad as the egg or coconut reactions.  At this point I kind of knew what to expect and I had a whole team of medical personnel in the room with me as well as my sister.  The nurse was amazing.  She swooped in and helped me to get E changed and stayed with my sister and E so I could get changed (E and I were both covered in vomit).  She said that E couldn’t eat or drink anything for an hour until his stomach had time to settle and we couldn’t use any of the same cups or utensils that we used after he had the soy, just in case there was a trace of soy on it.  She continued to carefully check E’s vitals every 20 minutes.  We were also told that we had to stay at the clinic for at least two and half hours after the reaction to be sure that he was ok (we had already been there for over 4 hours).  

E’s vitals remained stable and, as is typical for his reactions, he recovered faster than I did.  Within minutes he was out of the room and roaming the halls of the clinic.  Other nurses even commented about how he didn’t seem like he had just failed a challenge.  Then it started to hit me.  E really did have FPIES and it really could be serious.  I guess part of me still didn’t believe that he had FPIES.  He had always had his acute reactions at home (or in the car) and I  wondered if maybe we made a bigger deal out of them then we should have.  I really didn’t believe that he was allergic to soy, either.  Now here we are with what the doctor is calling a “very classic FPIES reaction” to soy! And all of the post-reaction protocols regarding cross contact and gut rest and checking the vitals and two and a half hours of observation.  This was real!  I’m pretty sure I was more shaken by that realization than by the actual reaction.

My general sense of fear and disbelief was not helped by the doctor’s assessment that E’s reaction meant that he must have been exposed to soy over the past year.  Now anger was officially added to the mix.  I KNOW E had not had soy since his IgE milk allergy diagnosis.  I also questioned the doctor because his theory is that you need to avoid the allergen for 18 months to become desensitized and I never claimed to have avoided soy for 18 months.  He stuck by his guns, sure that because of the severity of the reaction to such a small dose during the challenge meant that he must have been more regularly exposed.  Hmmm.  It was now quite clear to me that these “facts” were definitely unsupported theories based on his experiences and gut feelings (and not even consistent).  But I asked anyway, “Can exposure to soy oil and soy lecithin sensitize a person to soy?” We had been told that oil and lecithin didn’t contain the proteins and were safe and had not avoided them.  He danced around the question, not really providing an answer.  I obviously had a lot of research to do.

We eventually got to go home.  E was amazing, not really fazed by the craziness of the day.  I felt like I was an exhausted mess.  On the one hand we were able to clarify that his reactions were indeed FPIES reactions and that he was allergic to soy.  On the other hand I felt like I had been put through the ringer.  I didn’t know what to make of the information that the allergist had provided and frankly I was angry that he made me feel like a bad mom.  I was so grateful that my sister was with me through this crazy day but was definitely missing the strength and second opinions of my husband.  While some things were starting to become clearer, I felt even more confused about others.  I was questioning our approach to food trials and wondering if we should cancel the upcoming rice challenge.  I couldn’t wait to dive into the literature and find some real, empirically supported answers.

soy challenge on the way home

Finally headed home.
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.

shirt on ironing board

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…

 

0

Keep It Simple, Supermom!

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There is NOTHING simple about FPIES.  It is difficult to diagnose, difficult to understand, difficult to manage, difficult to explain, and very difficult to live with.  When your child has FPIES everything becomes more complicated.  Having dinner at a relative’s house means preparing a meal (as well as snacks and dessert) that travels well that you are pretty sure your toddler will eat with minimal intervention from you.  It means spending a holiday running interference between your child and the appetizers.  It means stressing about finding a shampoo that won’t be harmful.  It means spending who-knows-how-long on hold waiting for a customer service representative to confirm that “natural and artificial flavors” aren’t code words for allergens.  It means always being on the lookout for other toddlers who might try to share their goldfish crackers with your son.  It means being on trash patrol wherever you go so that your curious child doesn’t pick up (and God-forbid put in his mouth) a discarded candy wrapper or dropped Cheerio.  It means avoiding untested foods and going through crazy food trials before you can comfortably feed something to your child.  I could keep going, but you get the picture.  FPIES turns your world upside-down and adds a couple of extra layers of work to the easy, walk in the park that is raising a toddler.

But we rise to the challenge.  We are ready.  We are super-parents, ready to don our capes and do whatever it takes to keep our children safe and their lives as normal as possible.  That being said, sometimes we get ahead of ourselves. Sometimes we are so prepared for the extra layers of difficulty that we factor them in when it isn’t necessary.   We anticipate unlikely problems or create improbable scenarios.  Sometimes the crazy takes over and we make things more difficult then they have to be.

I’m often grateful that my husband, who is incredibly involved in E’s care and supportive of all that I do, is removed from E’s minute to minute care just enough to be objective.  It is his job to tell me when I’m being crazy.  He’s the one that reminds me that we aren’t leaving the planet for a dinner party and that our hosts will probably have a refrigerator to store E’s safe food.  He’s the one who reminds me that E already has a safe chocolate and convinces me to turn that into Easter candy.  He’s the one who reminds me that while a short nap is annoying, it is not the sign of an impending reaction.  He’s my crazy-meter and is usually pretty good at sounding a warning bell when I’m approaching a full-on crazy attack.

By the way, he’s also the one that reminds me that I have more resources than I realize, that I am capable of  supermom status, and that I can handle all of the challenges that FPIES brings.  

Unfortunately we recently had a situation where my crazy-alarm malfunctioned.  I think it started when my husband was forced to spend a day in my cape.  Right after Christmas E was recovering from an ear-infection and had to see his pediatrician on the same day that we had previously scheduled a dietician appointment.  It was incredibly bad timing that I woke up that morning with an awful stomach bug, the kind that prevents you from leaving the bathroom, let alone the house.  Jonathan was on his own.  He seemed to take it all in stride but I know how stressful one doctor appointment can be, let alone two in the same day. The dietician was especially challenging because I am generally in charge of preparing E’s foods and it’s hard to have a useful adult conversation while a toddler explores a new office.

One of Jonathan’s take-aways from the dietician appointment was that E needed more calcium in his diet and that we could accomplish this by feeding him salmon-potato patties made with canned salmon.  It took us a couple of months to get around to the salmon trial but when we did, super-dad was in charge of making the salmon into patties to feed our son.  Jonathan woke up one Saturday morning and reported to the kitchen where he started grinding chia seed, flaking salmon, chopping garlic, and who knows what else. It wasn’t a difficult recipe but it was somewhat time-consuming and in the end E was not a fan.  I used every supermom power I could think of to get him to eat.  We were way past generic airplanes of food flying into the hangar.  I was acting out scenes from Dinosaur Train and Curious George (and a little bit wishing that we allowed him to watch more TV so I had a larger repertoire).  I was singing, dancing, using bad accents, and generally making a fool of myself.  It was exhausting and my audience was not appreciative.  I had even resorted to bribing E with other foods.  If he took a bite of the salmon patty, he was rewarded with a bite of avocado (I don’t know where this kid came from but he’d take avocado over chocolate any day!).  After a couple of days of forcing my son to eat food so that I would know it was safe (but never feed it to him again) I was ready to give up on salmon all together.

But it was still important to me to know that a fish was safe.  This would open the door to other fish and answer a question that the allergist was sure to ask at our next appointment.  So we went back to the drawing board and decided to change our approach.  While the canned salmon was best for calcium intake (because it contains skin and bones – yuck), maybe it was as unappetizing to E as it was to me and we should just try another recipe.  I bought a frozen salmon filet and Jonathan consulted with some friends to develop a lovely, safe poached salmon recipe.  So he spent another Saturday morning stinking up our house lovingly creating a gourmet meal for our toddler.   Luckily our son is generally open to trying new food and readily ate about two bites before he decided he was finished.

poached salmonChecking out the poached salmon. 

Maybe he really hated salmon, or maybe he decided he liked his new mealtime entertainment.  Either way, I was not interested in another week of theatrics and fighting with him to eat a food that wasn’t going to become a regular menu option.  I was just about ready to give up on the salmon all together when I remembered the KISS principle. KISS stands for Keep It Simple, Stupid.  It’s a reminder to stick with the basics and not make things more complicated than they have to be. Hmm.  Were salmon patties and poached salmon for a one year old unnecessary complexities? I’m not sure why I didn’t see it sooner.  Typically I try to conduct food trials with the purest form of the food possible – keep it simple.  I decided to harness the power of the avocado and simply mixed the canned salmon with avocado, mashing them together like a salad.

Magically, he ate it! More accurately – he shoveled the salad into his mouth as though at any minutes I might take it away from him! I couldn’t believe it!  The rest of the salmon trial was a pleasure.  Most importantly there were no reactions! All this was to say that salmon was a pass! And now I have a SIMPLE new recipe that I can use to increase E’s protein and calcium intake.

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Shoveling the Salmon/Avocado Salad into his face.

I know that I have a tendency to make things more complicated than they have to be.  While my husband is usually an awesome crazy-meter and can stop me in my tracks, he travels and sometimes he gets wrapped up in the complexity of our lives too.  So, my new mantra is going to be KISS – Keep it Simple Supermom!  I believe that mantras should be positive and I’m not making things complicated because I’m stupid, I’m making them complicated because my supermom cape prevents me from seeing the simple solution 🙂

We are about to start our crab trial – I bet you can’t guess the recipe we are using…

3

On The First Day of Salmon My True Love Gave to E…

salmon close up
…A quarter salmon patty 🙂

That’s right, Saturday we started the 12 Days of Salmon, which isn’t nearly as exciting or interesting as the 12 Days of Christmas, but we do what we can to keep things fun around here.

At our last allergist appointment (in November) our doctor encouraged us to try fish and shellfish, which are E’s last two top 8 allergens to try.  He’s never had a positive scratch test or blood test to either and they aren’t very common FPIES allergens, so there really wasn’t a reason not to go ahead and give it a try.  (FYI, this information has absolutely no bearing on how nervous I feel about starting a new trial, especially one with a higher likelihood of an IgE allergy.)  Well things got pretty crazy after that appointment and we finally have the time and motivation to start the trials.

The motivation for the fish trial was also spurred by a not-so-recent (January) trip to the dietician, who is a little concerned about E’s calcium intake.  It’s really hard to get enough calcium without any dairy products. I’m not sure why Neocate doesn’t meet all of the calcium requirements, but that’s a rant for another day. She suggested several things – almond milk, leafy greens, and salmon.  She specifically recommended canned salmon, explaining that it  contains tiny bones which are an excellent source of calcium.  So, it seemed like no-brainer to use canned salmon for the fish trial.

Ok, I’ll admit it. Besides the nerves-factor, the hustle and bustle of the holiday season, and several illnesses, the main reason why I put off the fish trial is because I don’t really like fish.  In small doses it’s ok, and I like a lot of shellfish, but fish just isn’t my favorite. That doesn’t really matter though, because I, of course, want the best for E.  So I went grocery shopping. When I found the canned salmon I was horrified to learn that the salmon that contained the bones also contained skin.  Ewww.  I have served my son some pretty gross things on this journey (think pureed lamb mixed with pureed peas).  However, at that moment, in the grocery store aisle, as the nausea set in, I decided that my husband would be preparing this dish for our son.  He graciously accepted the challenge (and only mocked me a little bit).

We found a recipe for Potato Salmon Patties and made a few modifications to get to the recipe below. Jonathan whipped them up first thing in the morning (nothing like a fishy-smelling house at 9 am) and they were ready by lunch.  I got to be the one to serve the little man a lovely lunch of peanut butter and jelly with a side of salmon patty (yum).

 PB&J with Salmon

E was not instantly in love with them.  He spit out his first two bites.  That meant that I had to walk a very thin line between forcing him to eat something that he might be allergic to and encouraging him to try a new food.  It’s even more difficult because I’ve started to notice that E tends to reject the foods that he later reacts to.  But he’s also a toddler who is used to eating the same thing day after day.  So I explained to him that they are like “meat-a-balz-a” (ala Chef Pisghetti from Curious George), at which point he decided they were worth another try.  He then allowed me to feed him the rest of the salmon on his plate.  We always start food trials at a very low dose, so it was only a 1/4 of a patty that day.  I watched him carefully, jumping at every sniffle or cough, and checked the monitor a little more closely and obsessively during nap time.  I’m happy to report that there was no sign of a reaction!  He ate the quarter of a patty much more readily on Sunday (without any theatrics and by himself) and so far, so good.  The plan is to give him half a patty for the next three days and then a full patty until the end of the 12 day trial.  I’ll let you know how it goes.

In the meantime, if you’d like to join E on his latest food adventure, here is Jonathan’s adapted recipe:

Salmon Patties By Jonathan

Makes 6 Patties

Ingredients:

2 (7.5 ounce) cans salmon, drained and flaked
2 Tbsp Chia Seed, Ground
6 Tbsp water
¼ cup bread crumbs
6 “vigorous shakes” of Italian Seasoning
¼ cup dry potato flakes
1 medium onion, minced
1 clove garlic, minced
Salt and pepper to taste
Olive Oil (or other non-stick) Cooking Spray
 
Directions:
Preheat the oven to 350º
Combine the ground chia and water and set aside.
Combine the salmon, breadcrumbs, seasoning, garlic, onion, salt, pepper, and chia mixture.
Spray a cookie sheet with olive oil spray.
Form the mixture into 2 inch balls and flatten to about 1/2 inch thick and place on prepared cookie sheet.
Bake at 350º for 39 minutes, until golden brown.
Enjoy!