8

Oat & Rice Trial Update

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

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

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

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

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

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

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

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

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

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The belly rash returns.

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

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

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

“You don’t want rice?”

“No mommy, no rice”

“Why don’t you want rice?”

“I algees mommy!”

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

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

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

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

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

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

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1

Global FPIES Day – Be the Voice and Put Awareness in Motion

Sometimes I feel whiney and selfish when I talk about FPIES and how it affects our lives.  The reality is that there are far greater problems out there than FPIES.  You don’t have to look far to find a story of a child who is fighting a serious or terminal illness.  There are people in Africa who are losing their entire families to Ebola.  There are children in US who are becoming paralyzed after having a bad cold.  Even within my own circle, I have friends with pneumonia and cancer and whose children have autism. Just this past week I hugged a friend who was saying goodbye to her mother and watched helplessly as friends stood beside the hospital beds of their children.  I can’t imagine the pain and fear that are so prominent in the lives of so many people – friends and strangers.

And my child can’t eat ice cream.  It sounds so petty and insignificant.  My complaining about spending extra time in the kitchen or not being able to casually eat at a mall food court on a day of running errands seems to have no basis in the grand scheme of things.  I’ll even go ahead and admit that an FPIES diagnosis is not even as horrible as having an IgE allergy.  There are no documented cases of deaths from FPIES.  The worst that will happen if my child eats soy is that he will vomit nonstop and go into shock from the dehydration and electrolyte imbalance.  I’ll rush him to the world-class children’s hospital and leading research center for FPIES that happens to be about 30 minutes from my house.  There he will receive IV fluids and will be sent home.  He will have several days of awful diarrhea and skin blistering diaper rash.  It was be upsetting to watch him go through that and stressful and I’ll worry like crazy but chances are, he will be fine.  I know that there countless people who would give anything for this to be their worst-case-scenario.

But, here’s the thing: our daily struggles are just that – they are ours.  There is no massive scale on which they are ranked and compared to others.  We all have things that ruin our days – from Starbucks running out of pumpkin spice syrup to a child who refuses to get dressed to a devastating medical diagnosis.  We’ve all had the experience of recounting the events of our terrible, horrible, no good, very bad days only to realize that nothing all that awful truly happened.  But it doesn’t matter.  In the moment your day sucked.  And you are allowed to feel sad and angry and sorry for yourself because it was your day and it didn’t go the way you would have liked.

Today, October 14, buried in the middle of Breast Cancer Awareness Month, Down Syndrome Awareness Month, Dyslexia Awareness Month, Pregnancy and Infant Loss Awareness Month, and Obsessive Compulsive Disorder Awareness Week  is our day – Global FPIES Day.  It is a day of awareness and action on behalf of all of the children and families dealing with FPIES on a daily basis.  Today I will don teal and do my best to spread the word about this rare disease that impacts every day of our lives.  I will encourage action and awareness and I will not feel guilty.

Global FPIES Day with E

I will share this information for me and for E and for all of the people who I have “met” through Facebook pages and email exchanges.  Most importantly, though, I share this information for a mom who I have never met but I know well.  She is a woman who is exhausted and covered in vomit.  She spends every night watching her infant cry out in pain.  But she doesn’t know why he is crying or why he is so upset. She nurses him to provide nourishment and comfort, not realizing that it is the couple of pieces of sharp cheddar that she managed to eat yesterday that is what is causing tonight’s distress.  She knows that something is wrong.  She knows that other babies don’t act this way.  But she is told that it is normal for babies to cry and spit up.  She is told that her baby is healthy and that he is just trying to figure out how to live in our world.  But she spends her days and nights worrying.  She worries that she is doing something wrong or that she’s missing something.  She worries that her baby isn’t growing.  That he isn’t developing appropriately.  She worries that she will never be a good mother because she doesn’t know how to calm her son.  She worries that she will never sleep again and wonders how she will get through the next couple of weeks, or even hours.  This post is for her.  I want her to know that I understand.  I’ve been there.  Many of us have been there.  She will get answers (though never quite enough).  She will figure out this mothering thing.  She will learn that she is always right when it comes to her baby, that no one knows her son the way that she does (after all, she created him!).  She will come to trust her gut and do her own research.  She will stumble across this thing called FPIES.  She will read descriptions of this rare allergy and wonder if someone has been spying on her, because it so completely describes what she has been living.  She will fight for her baby.  She will become stronger than she thought possible when faced with medical professionals who tell her there is nothing wrong.  She will become an expert.   An expert in FPIES symptoms,  an expert chef and baker, an expert mommy to her little boy.  She will be able to predict the ingredients of food on the grocery store shelves, art supplies, and toys.  She will develop the ability to walk into a room and within seconds know where the food is and what everyone is eating – she will be able to spot a toddler with a Cheerio from half a mile away.  She will cringe when she sees the words “natural flavors.”  And she will watch her son thrive despite his dietary limitations.  She will never forget the fear and uncertainty of those early months but she will view them as only a rough start to an incredible journey.  I want her to know that it’s ok to cry and feel sorry for her child and herself.  And I want to arm her with all of the knowledge that I can so that she is ready for what sometimes feels like a daily battle.  I want her to know that she is not alone.

I hope that you are not this mommy.  However, for her, the woman who is right now hoping there is enough coffee in the world to get her through the day and is searching desperately for anything that might help, I want to provide some information about FPIES.  I encourage you to read and share this information.  Even if you slept well last night and will be sending your child off to school or daycare without a care about what they will eat today or don’t even have children, you might have a friend who is dealing with this but is too tired and overwhelmed to know where to start or feels like her problems aren’t worth talking about given the other crises in the world.  Share this with parents and especially with healthcare workers, many of whom have never heard of FPIES.  Please, just for today, humor me and my first world problems and help me to spread awareness about food protein-induced enterocolitis syndrome, a rare food allergy that affects the gastrointestinal system.

I encourage you to explore all of the great resources provided by the FPIES Foundation and International FPIES Association (I-FPIES).  At a minimum, please review the picture below for the basics.  You can also take a minute to look around the blog.  The FPIES Information page provides the nuts and bolts of the diagnosis.  However, every word I write is an illustration of what FPIE is.  Please share in the struggles and victories that make up our story and know that there are many other stories being written right this moment.

FPIES Awareness Card

If you want to take an extra step, consider donating to the organizations that support the FPIES cause.  You can make a monetary donation to I-FPIES, an incredible organization that was founded by parents who want to support and encourage each other and recognizes the need for more research and empirically supported approaches to dealing with FPIES.  You can also support I-FPIES by purchasing a bravelet.  These beautiful bracelets remind us to “be brave” in the face of our daily struggles, no matter how small.  Ten dollars from every purchase is donated to I-FPEIS.  Finally, a super-easy way to help the FPIES Foundation, an organization that provides information and support to families living with FPIES, is through Amazon Smile.  When you begin your shopping on the Amazon Smile page, a percentage of your purchase is donated to the FPIES.  You set it up once and every time you shop you help increase awareness, support, and education.

Please help us be the voice of FPIES.  Learn about it.  Tell others about it.  And do what you can to put the awareness in motion.   Thank you for always supporting E and our family as we continue to thrive despite FPIES.

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Anaphylaxis & How You Can Help – Food Allergy Action Month

Ok.  It’s now the last week of Food Allergy Action Month and National Asthma and Allergy Awareness Month and I’ve been pretty bad about keeping up with my commitment to participate.  However, I haven’t been as negligent as it seems.  I’ve just been more focused on acting and less focused on posting about my actions, which of course, is no way to raise awareness.  So, in the homestretch I want to highlight one of the more important aspects of allergy awareness, something that I think everyone should know about, regardless of the amount of contact you have with people with food or other allergies – Anaphylaxis.

It’s a couple of weeks late, but Wednesday, May 14 was Anaphylaxis Awareness Day.  Anaphylaxis is the result of an IgE-mediated allergic reaction and not something that most people with FPIES has to worry about.  However, some children with FPIES also have IgE-mediated allergies to some foods.  For example, E tested positive for an IgE allergy to cow’s milk.  We aren’t really sure if he would have an anaphylactic reaction to milk or if he would have an FPIES reaction, or if he has outgrown the allergy and would be fine.  Either way, we are prepared.  We always have an epipen on hand and have become very familiar with the symptoms of anaphylaxis, just in case.

Even if you don’t know anyone who has tested positive for an IgE-mediated allergy, it’s important to recognize the symptoms of anaphylaxis.  Unfortunately most people are diagnosed with an allergy after their first anaphylactic reaction.  Think about it, allergy testing isn’t routine, so how would you know you allergic, other than having a reaction? Also, allergies can develop at any time.  My aunt ate seafood all of her life and as an adult had a sudden, unexpected anaphylactic reaction to fish.  Now she carries an epipen and avoids all fish and shellfish.  Knowing the symptoms of anaphylaxis will allow you to recognize a reaction, realize that it is serious, and know how to react, whether it’s in yourself, your child, or a stranger. The most important reason to be familiar with these symptoms is because the response has to be fast.  Depending on the severity of the allergy, you may only have seconds to respond with epinephrine before the person stops breathing.  If you can recognize the symptoms and respond by injecting epinephrine quickly, you could save a life.  FARE has put together this great overview of anaphylaxis.  Please review it so you know what you are dealing with and what to do if you see anyone with these symptoms. Based on this information, I hope it’s clear to you that administering epinephrine as quickly as possible is imperative.  Giving an epipen injection is a little scary, but I’ve never heard of anyone who regretted it.   The person having the reaction is usually so focused on their anaphylactic symptoms that they don’t even feel the needle.  And it’s better to err on the side of caution – you can not hurt someone by giving an unnecessary epipen injection.  IT IS ALWAYS BETTER SAFE THAN SORRY when it comes to an allergic reaction.  You can watch a demonstration video online or ask for a demo from someone you know who carries an epipen.  The more familiar you are, the less scary it will be and the more effective you will be.  When E was first diagnosed we held a family meeting so that all of his grandparents, aunts, uncles, and even his eight-year-old cousin would be familiar with the symptoms and what to do.  We passed a demo epipen around the group and everyone practiced.  We haven’t had to use it (Thank God!) but we are ready if we ever do need it.  

Of course, all of this is only relevant if you have access to an epipen.  What about someone who left it at home that day or one of those people who are having their first reaction and didn’t even know they had an allergy?  In general, the only thing you can do is call 911 and hope their response is fast enough.  However, FARE and other food allergy advocates are working hard to increase access to epipens, especially in schools. There are several bills in the works for increasing access to epipens and you can help by contacting your representative and asking them to support the new laws related to epipens.

I know, you are thinking that there is no way you have time for that.  But FARE makes it so easy – there’s really no excuse! The Action on May 6 was to sign up for the FARE Advocacy Action Center.  I had never heard of it, but in keeping with my commitment to Food Allergy Action Month I decided to at least check it out.  It was amazing.  All you have to do is complete an information form and the website figures out who your elected officials are.  You choose the actions that you want to support, the website provides you with an email that you can send or edit as you see fit, it figures out which of your elected officials should receive your letter, you click submit and then you sleep better at night knowing you are doing what you can to help people who are living with food allergies (even those who don’t even know it).  It took me about 5 minutes to send emails to congress to support funding for stocking epinephrine in schools and to support funding for food allergy research.  I also signed up to receive an alert whenever there is a new campaign that needs my help.

Thank you for becoming more aware of the symptoms of anaphylaxis, what to do if you see the symptoms, and maybe even urging congress to help protect those who are at risk for anaphylaxis.  Those of us who love someone at risk for a reaction really appreciate it!

Have you been participating in Food Allergy Action Month? What have you done this May to make the world safer for people with food allergies?

 

 

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.