3

A Bittersweet “Last Time”

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A poem called “The Last Time” has shown up in my Facebook newsfeed several times over the past couple of weeks.  Have you seen it?  It’s one of those poems written to make parents weep. Seriously. It’s all about how your child will grow up and how there will be a last time for all of the things that you take for granted (wiping a dirty face, holding a hand to cross the street, etc.).  It’s actually quite beautiful and one of those reminders that we need as we struggle with the parental hassles that make up our daily to-do lists. If you need a good cry, you can read it here, but have your tissues ready.

I’ve been thinking about this poem a lot today as we are in the midst of a “last time.”  Today will likely be E’s last full day of Neocate Junior.  And quite frankly, I’m a little emotional about it.  (Jonathan, stop rolling your eyes.)

It never occurred to me that a baby formula would become such a part of our lives and now that we are on the cusp of moving on I don’t really know how to feel.

photo 2                                                              Last 22 oz pitcher of Neocate!

Let me explain…

Before E was born I knew I wanted to breastfeed.  I had read all about the benefits of nursing and wanted to provide them for my son.  You know me, I read a bunch of books and articles and even dragged my wonderfully supportive husband to a Saturday morning workshop.  I was ready.  And apparently so was E.  He latched on immediately in the delivery room and I breathed a sigh of relief that nursing was going to work for us.

That was last time that feeding my infant was easy.

Somehow we started having problems with nursing and E lost a significant amount of weight in the hospital.  I could tell that it was serious because the attending pediatrician (who actually happened to be a neonatologist – the kind of doctor who has seen very sick newborns) wouldn’t discharge E until we had made an appointment to see his pediatrician the following day.   At that very first pediatrician appointment, the doctor told me that I had to start supplementing with formula to get his weight back up.  I had read that this was a bad idea and looking back I probably should have tried to nurse for a little longer, but I was scared.  Here I was sitting in the pediatrician’s office with this new tiny person who was completely reliant on ME.  A tiny person who wasn’t even supposed to be here for another two weeks!  I was exhausted and shell-shocked.  I felt like I didn’t know anything so I did what I was told.

And so that was the beginning of our formula story.  I’ve written about this before so I won’t bore you with the details of visits to lactation consultants and pediatricians and falling off of growth charts and trying various formulas to get my child to stop vomiting and start growing.

Shortly after E turned 4 months old we found ourselves sitting in an allergist’s office.  When we got to that appointment we were exhausted and bewildered.  We had this adorable baby who was finally growing but continued to spit up constantly.  He always seemed uncomfortable and didn’t sleep (so neither did we).  I remember the comforting relief as the allergist listened to us, validated our concerns, and agreed that something was wrong.  I remember the confusion when his scratch test was positive for milk and the fear and disbelief as we were trained on how to use an epipen.  And I remember the hope that I felt when we were presented with Neocate, a hypoallergenic amino acid formula.

I felt confident that Neocate was the answer.  This can of powder was going to nourish our son without poisoning him the way everything else had.

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Loving his cup of Neocate at about 9 months

Well, it took several weeks for the allergens to work their way out of E’s system and in the meantime we actually added more!  But eventually he started to thrive on Neocate.  As we learned more about his reactions, eliminated his allergens, and found out that he had FPIES, we started to feel more confident in our ability to safely nourish our little boy, thanks to Neocate.

When E turned one, as most families were switching over from formula or breast milk to whole milk, we switched from Neocate Infant to Neocate Junior.  His diet was still very limited and his nutritionist explained to us that while non-dairy milks have high levels of calcium, there was no substitute for the protein and fat in cow’s or soy milk.  So we continued to give E Neocate several times a day.  He looked forward to his “cups.”  In fact, when he was 16 months old and had a stomach bug we fed him only clear liquid for a day.  He practically jumped for joy when we gave him a “cup” of Neocate the next morning and he said “yum” for the first time 🙂  This formula has been his comfort food, the first food that didn’t make him sick and the stimulus that finally helped him to grow into the rambunctious boy that he is today.

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Ok, I may be romanticizing Neocate a little.  There were definitely some things about it that we didn’t love.  For the past two years, every morning (before coffee) we have to pull out the scale, and measure, scoop by scoop, the amount of powdered Neocate for the day.  This results in various degrees of powdery mess, depending on how tired we were or how (im)patient E was.  Then each night we had to hand-wash the container that we mixed it in so that it was ready to go for the next day.

Relying on Neocate, especially when it was E’s only form of nutrition, was sometimes stressful.  We always had to have enough of it with us.  You can’t just run into a grocery store and pick some up if you forget it.  We never left home with an “emergency cup,” enough powder to make one extra cup if something happened and we found ourselves needing it.  Oh, and it wasn’t cheap!  At one point E was going through about two cases every three weeks.  These two cases had a $255 price tag that we paid out-of-pocket for several months.  After much stress and fights with our insurance company, they finally agreed to cover it – but I’m pretty sure that we grew several gray hairs in the process.  Neocate wasn’t always easy or perfect, it has been our constant. And I really believe that it saved our little boy.

Yesterday, we returned to the allergist.  This appointment was so completely different from that first time.  Instead of carrying our thin, tired, spit-up soaked infant into the office like zombies; our chubby little boy in his clean button-down shirt led the way to the exam room.   The answer to the nurse’s “how is everybody doing?” was an enthusiastic “great!”  We didn’t have any reactions to report since our last visit in April.  We were continuing to successfully add fruits, vegetables, nuts, and fish to E’s diet.  We didn’t really have any concerns.

Everyone was pleased to see how well E was doing.  The kid sure knows how to work a room, too!  He had all of the staff ogling over him in minutes.  He had IgE skin tests for all of his allergens and they were all negative! And so the plan moving forward is to start to challenge the allergens that he’s been avoiding for over a year (more on that later).  Then the doctor said it – Neocate Junior is no longer necessary.  

E can now safely drink almond milk and cashew milk.  We are almost finished a hemp milk trial, too.  The doctor is confident that with his diverse diet and these milk-alternatives, he doesn’t need the Neocate.

IMG_3474Nothing like hanging out at Starbucks with a good book and some almond milk

It’s definitely a relief.  It’s amazing that after two years, we are finally off of formula.  But I can’t help to be a little bit sad that it means my baby is growing up.  Sure, it’s been over a year since he has had a bottle, but something about the formula allowed him to stay my baby.  I guess I am feeling the same way all parents feel at all milestones, it’s exciting to watch our children conquer another new skill in life, but sad that we have to experience another last time.  I think I also feel kind of like my therapy clients feel at their final session.  Neocate has been like therapist to us.  It has guided us through some really tough times.  It helped us pick up the pieces when we were at our lowest point.  It gave E the nutrition that he needed to grow and the ability to branch out and try new foods.  It has been our support for so long.  But, as I always tell my clients, the goal of therapy is to provide them with what they need so that they can move forward on their own, without the need for a therapist.  And that is what Neocate has done for E  (and for me and Jonathan, too).

We still have some of our Neocate stash so I think we will slowly work it out of his diet over the next couple of days.  Honestly, this is probably more for me than it is for him.  As much as he loves his “cup” I think he’s just as happy when it has almond milk or hemp milk in it.  In fact, E can’t seem to get enough hemp milk! I can’t predict if he will miss his Neocate or not.  He only stared at me blankly when I tried to explain the significance of his last full day of Neocate.  I think I’ll miss it for now but someday I won’t even be able to remember why it felt sad to me to leave it behind.

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Of course, part of my baby growing up, also means that he is getting closer to outgrowing his allergies!  We were told from day 1 that he will likely outgrow the allergies by age 3 (though the current research isn’t as optimistic).  That is officially less than a year away now!  We have scheduled his hospital-based challenges for milk, rice, and oat in November and December.  It’s possible that by end of 2014 he will be able to safely eat these three foods that we have been avoiding for most of his life! I can’t even wrap my head around that.  I’m trying not to get my hopes up too high but as I made my last 22 ounce pitcher of Neocate this morning I couldn’t help to wonder if this is the beginning of our FPIES “last times.”  And the beginning of so many firsts!

 

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“Cheers!”
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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.

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Finally headed home.
2

Hindsight is 20/20: What I’ve Learned About Chronic FPIES

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Over the past couple of weeks I’ve written blog posts that I liken to the first two chapters of E’s FPIES journey: leading up to the (IgE) milk allergy diagnosis and from then until we eliminated grains from E’s diet.  My goal in writing those posts was to give you a glimpse into what that time was like for us.  I don’t think words can express the degree of anxiety, exhaustion, desperation, frustration and helplessness that we felt, but maybe I provided a little insight.

Many of you have asked me if these posts were difficult to write.  They were.  It is difficult to relive that period and it is difficult to pull the snippets of memories into a coherent story.  It is also hard to remember what we knew when and what we felt when.  But I think it’s important to tell our story, so that hopefully someone else who relates can learn from it.  It is also cathartic and helpful for me to try to iron out all of the details and emotions. Honestly, I usually publish the posts feeling a huge sense of victory and pride.  After remembering where we were, our current situation is amazing!  If you have seen E lately you know that he is thriving.  We are conquering FPIES every day.  But it was quite a journey to get here and I’d like to continue to share that with you.  If for no other reason than for you to be able to truly appreciate and join us in celebrating how far we have come.

 

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 April 2014

I thought that this point in our journey would be a good time to take a step back and relate what we were experiencing to what I have since learned about FPIES.

Looking back at those first 7 months of E’s life, knowing what I know now, it is clear to me that he was experiencing chronic food protein-induced enterocolitis syndrome (FPIES).  Chronic FPIES results from the chronic ingestion of an allergen.  It is a group of symptoms that continue pretty much constantly because the allergen, which is causing them, is eaten over and over.  The classic initial presentation of FPIES is usually chronic because it is to one of the staples of the diet – cow’s milk or soy. The milk (often in the form of a baby formula) is the primary (or only) food that the infant is eating and it usually isn’t clear at first that it is related to the symptoms, which include chronic diarrhea and profuse vomiting.  The vomiting and diarrhea can lead to failure to thrive, low blood pressure, and shock (6,108,110)*, which may require hospitalization.

E certainly had the vomiting!  It makes sense the he was vomiting all the time because he was constantly exposed to his allergens.  He was only three days old when we started supplementing his nursing with a couple of ounces of (milk-based) formula.  Newborns eat every two hours and the timing starts at the beginning of a feeding.  E ate slowly (probably because his little tummy was always upset) so we were pretty much feeding for an hour at a time, taking an hour break, feeding again, and so on.  He didn’t sleep (again, probably because he was so uncomfortable), so he didn’t really have any time to get the allergens out of his system before I gave him more.  The vomiting was constant with no obvious pattern because the feeding was also fairly constant (or at least it felt that way).  It’s not clear if he was reacting to allergens in my breast milk (from my diet), which is possible but rare (6) but we followed every feeding with a couple of ounces of formula.  So he was definitely getting milk (or soy for a few days) every 2 hours or so.  Obviously, I had no idea that I was essentially poisoning him every time he ate, but I still feel incredibly guilty.

And then there was his weight.  I’m not sure if anyone ever officially classified him as “failure to thrive” but it was definitely a phrase that went through my head more than a couple of times after learning that he was less than the 3rd percentile in weight and height at his two month well-visit.  At the time I think the pediatrician assumed it was because my breast milk supply was low, and that may have been the case.  However, I am also convinced it was because he was vomiting so frequently and in such large quantities that he wasn’t digesting the nutrients and calories that he was taking in.  The poor kid was starving, despite the (seemingly constant) hour-long feedings.  Keep piling on the mommy guilt, and now add the heartbreak of realizing how sick and hungry your little boy was during his first two months of life.

I don’t think E ever had the diarrhea, which is one of the things that originally gave me pause about the FPIES diagnosis.   I’ve since learned that only about half of the children with FPIES have diarrhea (105).  In addition, E rarely had any bowel movements.  We were convinced he was constipated (a logical conclusion based on his lack of poop and apparent discomfort), but in hindsight it seems more likely that he didn’t have enough food being digested to make waste.  It wasn’t that he couldn’t get the poop out, it was that there wasn’t any in there to begin with.

Finally, I have learned that about one-third of patients with FPIES also have atopic diseases such as eczema (6, 110), which explains E’s skin issues.  I will say that as awful as the vomiting was and as upset as I was about his failure to thrive, I am so grateful that he never had any of the more severe symptoms such as extreme lethargy, hypotension, and shock, which occur in about 5% of patients (105).

When I read these descriptions of chronic FPIES, it seems as though they are describing E.  It seems so clear that this is the correct diagnosis for him.  I only wished we had realized it sooner.  If had known and had done more research, I think the second chapter would have looked different.  If I had known the stats concerning multiple allergies and grains, I would not have given him rice and oat.  I now know that approximately 48%  of FPIES patients react to more than one food (110) and 30% react to three or more (105).  After milk and soy, rice and other grains are the most common triggers (105).  About a quarter of those who react to milk and soy also react to one or more grains (110).  Further, 40-50% of those who react to one grain, react to another grain (105, 110).  It has also been noted that  those with solid food FPIES are more likely to have eczema (110).  Because of these findings, one group of researchers (105) recommended caution when introducing grains to children who react to milk and soy.

I feel like we were led somewhat astray by the recommendation to add rice or oat to E’s formula to help prevent the “spit-up” (which, by the way, I am now sure was actually vomit as a result of an allergic reaction).  If I had known about the high rates of reactions to grains (with these two being the most common), I would have avoided those longer and tried to obtain a clearer baseline after eliminating milk and soy.  So, yeah, in trying to help our baby, we actually made him worse.  On the bright side, these data do support our decision to avoid all grains for a while.

It’s now clear to me that so many of the things E was experiencing – the eczema, the sleep problems, the poor weight gain, the general discomfort, and especially the vomiting – were the result of FPIES.  Thankfully, this also meant that once the allergens were eliminated from his diet, he started to improve.

By the end of March 2013 his only source of nutrition was an elemental formula (which contains no proteins and is, therefore, hypoallergenic).  We had removed milk, soy, and all grains from his diet.  In April (8 months old) the vomiting stopped, his skin cleared up, and he started taking two good naps and sleeping through the night.  And I could breathe again.

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When E was about six months old (which is the recommended time frame), we were given the ok to introduce fruits and vegetables.  I decided that it would be safest for me to make E’s baby food.  I had never even imagined making baby food but I wanted the control of knowing exactly what he was getting and be sure that any contact with his allergens was avoided at every step in the process.  We followed the four-day wait rule, that is recommended for all children (not just those with allergies).  We introduced one new food at a time and offered it for four days before declaring it safe and moving on to the next food.

E loved everything we gave him!  It’s actually fairly common for children who have food allergies or other food-induced ailments to have aversions to food and reject new foods.  Not E! Before we knew it he was eating pureed avocados, bananas, sweet potatoes, pears, apples, carrots, peas, and the list kept growing.  We even started to add meats and eventually baked egg (in preparation for his birthday cake).  As he got a little older it was tricky to find good finger foods (the typical first finger foods are usually Cheerios or wheat/rice puffs – all primarily grains), but he did great with small pieces of bananas, avocados, and sweet potatoes.  We eventually found Happy Baby Happy Creamies, which are coconut milk-based fruit and vegetable melts.  These sweet treats became a favorite snack.

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They didn’t always make it into his mouth…

I spent the end of E’s first year perfecting my label-reading skills, enhancing my creativity, brushing up on my cooking techniques, and catching up on much-needed sleep.  I remained in constant fear of an anaphylactic reaction to dairy but triple-checking to make sure we had the epi-pen before we went anywhere became second nature.  E’s diet was limited but he wasn’t having any reactions.  As we approached his birthday we did another round of skin tests, all of which (even dairy) were negative, as were blood tests.  This was great news and a step in the right direction but not enough evidence to know for sure that his allergies were gone.  At least two negative tests are needed and an oral food challenge to know that he has officially outgrown an allergy.  So we allowed ourselves let out a little sigh of relief but didn’t let our guard down, just in case.

By the time we made it to August (and E’s first birthday) we had a lot to celebrate.  We finally knew what was going on with our baby and felt in control of it.  E was thriving, his weight had exceeded the 90th percentile, though he was still a little short (we’ll cut FPIES some slack and blame my short grandfather for that one).  He was starting to walk and was generally an adorable, happy baby.  We celebrated with a Curious George-inspired, dairy-free party complete with dairy-free, grain-free coconut-flour birthday cupcakes.  E had a blast and loved his cake 🙂

Eating Birthday Cake

 
*I’m going to attempt to infuse some research wherever possible.  There isn’t much out there but I think it’s really important to acknowledge what we do know and let it guide our decisions in managing FPIES (and any other illness, really).  Clicking on the numbers will take you to the journal article page with the complete citation for each number.  I hope this is helpful.
4

“Happy Spitter” – The Beginning of Our FPIES Journey

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I’m a worrier.  I worry – a lot – it’s what I do.  I’m pretty good at it.  I know that I’m a worrier and I work really hard to keep it in check (but I’m not so good at that part).  So, keep this in mind as I recount E’s first four months of life.

E was born about 3 weeks before he was due and about 5 weeks after we moved from Florida to Pennsylvania.  Luckily we had a wonderful team of family members who helped us unpack, build furniture, and stock the nursery.  We were pretty much ready for his early arrival, except for the fact that the carseat wasn’t installed and our last childbirth class was scheduled for the day after my water broke.  But we had a crib and diapers and lots of adorable little clothes, so we would be able to manage.  Like any new parent, we were super-excited and had no idea what to expect.

I’m sure you saw this coming, but even in my haze of overwhelming love and awe at the human that we created, I found something to worry about.  I was concerned that nursing wasn’t going well and that he was losing too muchweight.  To be fair to myself, this worry was the result of the fact that nursing wasn’t going well and he was losing too much weight.  These are facts.  It had been my goal to nurse E for as long as it was possible and realistic for us.  I tried not to have unrealistic expectations related to breastfeeding. Other women in my family had difficulties nursing and with supply and I was worried that I might too. But I was determined to try.  The first time I nursed, in the delivery room, E latched on immediately!  I was so relieved, which only led to more intense frustration hours later when the nursing stopped going well.  I worked so hard at it, I saw several lactation consultants and talked to some very patient postpartum nurses while we were in the hospital.  We were doing ok with the nursing by the time we were supposed to be discharged but E had lost a significant amount of weight (just over the acceptable 10% weight loss).  The hospital pediatrician wouldn’t discharge us until we confirmed that we could get an appointment with our pediatrician the next day.  At that appointment the pediatrician strongly suggested that I start supplementing with formula.  She also referred me to another lactation consultant who was great and supportive and had us doing all kinds of crazy things to support breastfeeding while supplementing with formula.  By his weight check at 4 weeks he was back to his birth weight.  We breathed a sigh of relief and stopped supplementing.  I could stop worrying about that (for now).

Which was good, because I had already found something else to worry about.  As a newborn, E had a tendency to spit up.  He spit up a lot.  Like all the time.  And not just a little dribble of spit-up, but an amount of spit up that often required an outfit change, for him and everyone in his general vicinity.  I never left the house without two or three changes of clothes for him and at least one change for me.  I still feel a little guilty because he spent about 6 months in one-peice pajamas.  He rarely wore those adorable little outfits that I was showered with prior to his arrival.  It just didn’t seem worth the trouble of getting him into a complicated outfit that would be drenched with spit-up within the half-hour.  My parents and in-laws learned to wear old clothes when they came to visit and cuddle with their new grandson.  It was a given that they would leave covered in vomit.  I didn’t get out much but when I did I usually had the pleasure of mopping spit-up off of the floors and furniture of our hosts.  I can keep going but I don’t think you’ll ever comprehend the amount of spit-up that came out of this adorable tiny creature.

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E slept in his “formal attire” one night after spitting-up on every other piece of clothing he owned.

I was a new mom but I knew that babies have a tendency to spit up.  Whenever I brought up the amount and frequency of the spit up, I was assured that spitting up was completely normal and we had nothing to worry about.   Still, it didn’t seem right and I started to worry.  When we reported it to the pediatricians they asked if he spit up after a meal.  Yes.  He spit up after a meal, and before a meal, and during a meal (which is great when your are breastfeeding).  He spit up all the time!  Granted, he was a newborn who was a bit of a lazy eater.  He nursed every two hours and usually fed for about an hour, so it was almost always after a meal. I was told (and read) that the amount of spit up always seems to be larger than it really is.  I was told that he was a “happy spitter,” a baby who spits up just because his esophageal muscles were still weak and that it wasn’t bothering him.  I was told not to worry.

I worried.  I worried when we put him in the cradle.  Is back really best for babies who spit up so much? Couldn’t they aspirate? I read study after study until I was convinced that it wasn’t a concern.  I still worried.  I didn’t believe that E was a “happy spitter.” I’ve taken a lot of psychology classes and read a lot of books on happiness and depression, and I was pretty sure that spitting up didn’t make my baby happy.  He cried a lot.  He arched his back.  It woke him up and prevented him from sleeping.  In fact, I started to recognize the pre-spit-up grimace that provided me with a couple of seconds of warning and a fleeting opportunity to reach for a burp cloth before the eruption.  If it didn’t bother him, why did he grimace? I worried that something else was wrong.

Then there was the poop, or lack thereof.  E would go several days without pooping, almost a week.  And he just seemed so unhappy.  He was squirmy, like he couldn’t get comfortable and acted like he was in pain.  We assumed he had awful gas pains and was terribly constipated.  We called the doctor frequently.  I’m sure our name was on some sort of list by the phone.  But we were worried.  We didn’t know any other baby who pooped so infrequently.  The doctors weren’t worried, but I was.

2 months

E’s 2 month well visit was traumatic.  He was significantly underweight.  At that visit he was in the 0.37 percentile for height and 1.25 percentile for weight.  For the first time since we left the hospital, I felt justified in my worry.  I could tell the doctor was also worried.  I was devastated but I had a whole list of things I wanted to discuss with the doctor.  I was really worried about the lack of poop and the discomfort that he seemed to be in as a result.  I was worried about spitting-up.  I was worried about his baby acne, which had spread from his face to his neck and chest and seemed to be getting worse.  The doctor prescribed Zantac, believing the spit-up may be acid reflux.  He prescribed a topical steroid, explaining that what we thought was baby acne was actually moderate eczema.  He ordered an upper GI to confirm that the spit up wasn’t an indication of a blockage preventing him from digesting his food.  Most significantly, he suggested that we go back to supplementing and go back to the lactation consultant.

The upper GI was normal.  His spit up was determined to be normal.  Once again, he was labeled a “happy spitter.”  The lactation consultant determined that he was latching well but that my supply was low.  She recommended that we continue to nurse but also continue to supplement.  I’m still surprised that the lactation consultant was so encouraging of supplementation, but that isn’t the most important thing she said to me.  She told me that it seemed like E had a milk allergy.  She noted his spitting-up and his eczema and strongly encouraged me to explore the possibility of an allergy.

At that point I tried to limit my dairy intake, but I didn’t cut it out.  I didn’t really believe that milk was the problem.  But I brought it up at our next weight check (E was getting weighed every 2 weeks).  I also brought up the fact E was still spitting-up a lot.  This time we saw a different pediatrician in the practice.  She switched E to omeprazole, saying that Zantac doesn’t work for everyone.  She thought the lactation consultant may be on to something and suggested switching him to a soy formula.  By the way, he was gaining weight at this point.  phew.

By now I was getting really worried.  My little man was still spitting up a lot.  I felt like no one really understood what “a lot” meant.  That was when I remembered – I’m a scientist. I needed to quantify “a lot.” We started keeping track. I put a post-it on the coffee table and made a tick mark every time there was spit-up. One day we had 27 tick marks! We shared our data at E’s next pediatrician visit.  Finally, we got our point across!  The doctor admitted that this was an usual amount of spit-up.  We also reported that we had to stop the soy formula after a couple days because the spit up didn’t improve and E became really constipated. (We now understood that what we were seeing before was not constipation. The poor kid wasn’t pooping because he didn’t have enough in his belly, between my low breast milk supply and all the spitting up.)  The doctor heard us! She had us switch E to Nutramingen, a partially-hydrolyzed formula and referred us to an allergist.  In the meantime, I decided that it was time to start weaning E from nursing and focus on only formula.  He wasn’t getting that much milk from me anyway and I wanted to know for sure what proteins he was ingesting.

At the end of December 2012 we had the allergist appointment.  It was the most thorough medical appointment I’d ever attended, including the ones that I led (which I always thought were incredibly thorough).  The doctor took a detailed history, which suggested to her that he was allergic to dairy and possibly soy, but conducted a scratch test of the top 8 allergens to be sure.  I remember waiting for the results and talking to my husband about what a dairy allergy meant.  His cousin has a dairy allergy that had required hospitalization but we still didn’t understand the severity of E’s allergy in the moment.  We thought surely a dairy allergy wasn’t the same as something like a peanut allergy.  When the nurse came in to read the scratch test she initially thought they all were negative.  However, when she got out her ruler she realized that the dairy scratch was slightly positive.  The doctor came in to discuss the allergy, along with an emergency aciton plan and we were trained on how to use an epipen.  That’s when it hit us that our son had a life-threatening allergy to milk (of all things!).  The doctor prescribed an elemental formula, which doesn’t have proteins in it at all, just amino acids.  She told me I could continue to nurse but that I should cut dairy from my diet.  She seemed pleased when I told her that I had already decided to stop.  I felt validated in my decision to wean and, as scary as it was, we were glad to have an answer and a plan.

That’s the difficult thing about worry – sometimes there is a real reason for it.  These four months taught me to trust in myself and my gut.  To not work so hard to conceal and ignore my worry.  To believe that I knew what was best for my son, and to always remember my strengths and my ability to collect data.