5

Research Revelations about Timing Food Challenges & Conducing Food Trials

highchair laptop

After my not-so-pleasant encounter with the attending allergist at E’s soy challenge I changed my approach.  I realized that I was actually more angry with myself than with the doctor.  I was approaching FPIES all wrong and wasn’t being true to myself.  Maybe that is why it all seemed so difficult.

So I started over.  I did what I always do when I have a problem.  I hit the books.  Well, more specifically, I hit the online databases.  It occurred to me that I really didn’t know all that much about FPIES.  When E was first diagnosed with his IgE milk allergy I bought a book and read and researched as much as I could in the small amounts of free time and on the small amounts of sleep I had.  I was able to wrap my head around IgE allergies and felt pretty confident moving forward.  After it started to become clear that we were actually dealing with FPIES I never went back and researched FPIES.  I’m not sure why, maybe I was just too exhausted, or in denial, who knows the reason, but I didn’t do the research.

Now we had all kinds of practical questions and some information from an allergist (who wasn’t E’s primary allergist) and nothing concrete to go on.  I considered making an appointment with E’s allergist but felt like it was most important to me that I arm myself with data first.  I actually started with lists of articles that the International Association for Food Protein Enterocolitis (IAFFPE) and the FPIES Foundation provided on their websites.  I also used related article searches on PubMed.  I spent about a week reading everything that I could.

Let’s stop there for a minute.  A week. I could read everything that has been published about FPIES in one week. I’m not talking about a week of 24/7 reading, either.  I’m talking nap times and after E’s bedtime but before mine (which is a pretty small window).  A week is an incredibly short amount of time to read all of the scientific literature on a topic.  For example, I have been reading about psychological factors and diabetes for about nine years and could never hope to read it all.  All this is to say that there isn’t much out there about FPIES.

And that is pretty much what I ended up learning: no one really has the FPIES answers.

Sadly, most of the FPIES literature is still at the point of describing the symptoms of chronic and acute FPIES.   There aren’t really any guidelines for living with and treating the syndrome, though the IAFFPE is working really hard to change that.  There were a couple of papers that describe one doctor’s or clinic’s experience with FPIES and that is the best that we have to go on.  At this point I was most interested in when to challenge a food that is thought to be an allergen.  Specifically, I wanted to know if I should go ahead with E’s rice challenge that was scheduled for February, about 11 months after his last exposure and end of chronic FPIES symptoms.  I also wanted more information about food trials – how to know a food is safe.  Specifically, how many days before we are in the clear.  We were still basically doing 4 day trials, 7 for riskier foods, but the attending at E’s soy challenge declared that 12 days of a food was necessary.

Here’s what I learned from the scientific literature (by the way, a few more articles have come out since I did my research blitz in December, so I updated what I found and have included everything I could find as of June 2014):

challenge warm packs

Waiting for the IV Team at E’s Soy Challenge

Best Timing for an Oral Food Challenge

Food challenges suck.  It sucks that the only way to tell if your child is allergic to a food is to feed him that food and then wait and see if he reacts.  But it’s all we’ve got and when they are passed it makes it all worth it, so I guess they are a necessity.  I obviously want to time food challenges so that they have the highest probability of being passed, so I was looking for recommendations about when to challenge and/or time to resolution of FPIES allergies.  I was most focused on rice FPIES at the time, but also kept notes on E’s other allergens so that I could make informed decisions about when to challenge all of them.

Solid Food FPIES (Rice and Oat)

There are only few articles available about solid food FPIES, as it is a relatively newly recognized syndrome (historically it was believed that you could only have FPIES to milk or soy).   What I did find was not reassuring.  In one sample only 40% of the participants tolerated rice at 3 years (17).  The same study reported that 66% resolved FPIES to oat and 67% to vegetables by 3 years (17). Thankfully, another study reported 80% of rice FPIES resolved by age 3 (111).   And a study that only contained two patients with solid food FPIES (one to rice, beef, and egg, and the other to shellfish and fish) reported that both children outgrew their sensitivities by age 2 (108), better, but we are basically talking about a case study here.   Unfortunately, the most recent research suggests that the median age of resolution is much later – 4.7 years for rice and 4 years for oat (106).   The authors of this study used a statistical tool called survival curves to determine the probability of outgrowing FPIES at different ages.  At age 2 the probability of outgrowing rice FPIES is about 13%, and oat was not quite 20% (106).   So, by the numbers, it doesn’t really seem worth testing rice until at least age 2, and age 3 would be even safer.   There is also some data that suggests that reactions to rice are the most severe FPIES reactions and require IV fluids most frequently (111).   The closest thing I found to recommendations for when to try rice was to wait 12-18 months after the last reaction (5, 106).  These data did not really make me want to rush my 17 month old into a rice challenge only 11 months after his last reaction.  I decided that not enough was gained by passing rice and the chance of a fail was too high and risky at this point so I decided to postpone the rice challenge for a while.  

Cow’s Milk FPIES

There’s more data available regarding resolution of milk and soy FPIES.  Again, this question was usually addressed in terms of age of the patient.  The study that examined the youngest participants reported that 27% of 6 month-olds tolerated cow’s milk, 42% of 8-month-olds, and 64% of 10 month-olds.  These authors reported that all participants were able to tolerate cow’s milk by 20 months (108).  But perhaps the most cited study on the topic reported that only 50% of children recover from cow’s milk FPIES by one year, 75% by 18 months, 89% by 2 years, and 94% by 30 months.  In this study, the average child outgrew cow’s milk FPIES by 12 months (109).  In a study that measured how long it took for the allergy to resolve (presumably after their last positive challenge), milk FPIES was outgrown in 60% of (10) patients over a median time of 24 months (ranging between 6 and 30 months (112).

Unfortunately a brand new paper that is currently in press has some pretty bleak findings regarding resolution of cow’s milk FPIES (106).  They report that the median age of resolution is 61 months (106)!   The survival curves suggest that at age 2 the probability of outgrowing milk FPIES is only 10% (106).  Based on these findings and a review of the literature, the authors of this recent study suggest challenging cow’s milk between 18 and 24 months after the last reaction (5, 106). 

There’s also some interesting data about positive IgE tests in children with FPIES.  Remember, E’s initial skin prick test (a test for IgE allergies) was positive to milk, so this is relevant to us.  It seems that patients who had a positive IgE test to milk at any point in their history have a more persistent FPIES course (106, 112).  In that study, none of the children who had a positive IgE test resolved their milk FPIES during the study period of over 13 years (106)!  Several authors recommended that a skin prick test should be conducted prior to a challenge and an IgE challenge protocol followed if there is any positive reaction to the IgE test (5, 106).  

I don’t really know what to make of E’s positive initial skin test.  All others have been negative and the result was small for the first one (but so was he – he was only 4 months old!).  The majority of the data suggest that we should wait to try milk until at least 2 years.  The most recent article is pretty depressing but it’s also a bit of an outlier so it’s hard to put too much weight on it.  Besides, those authors are still the ones that recommend the 18-24 month waiting period.  By age 2, E will have been dairy-free for 19 months, so I think waiting until then is a good plan for us.

Soy FPIES

The numbers for soy are a little more confusing because they are so divergent.   One study reported that only 25% of their sample outgrew soy FPIES after 24-36 months (112).  However, others have found that the average patient outgrew soy FPIES by 8 months (108).  Some authors have reported that all of their patients were tolerant by 14 months (8) and others have said that 83% outgrow it by age 3 (111).  The most recent (and dismal) data suggest that the median age of soy FPIES resolution is 6.7 years and the probability of outgrowing soy FPIES by age 2 is less than 10% (106).   Again, the recommendation is to challenge soy at least 12-18 months after the last soy reaction (5, 106).   Given the divergent data and that we have heard the 18 month rule of thumb before (13), we’ll plan to wait until at least May 2015 to try soy again.  At that point E will have been soy- (and hopefully reaction-) free for 18 months and will be almost 3 years old.

Like I said there wasn’t much to go on, but there was enough to draw some conclusions and make some decisions.  So I moved on to my next question – what are the guidelines for an at-home food trial? Were our 4 day trials enough? Should we be doing 7 days? Are 12 day food trials really necessary? And how much should he be eating during these trials?

photo

E digging in to a plate of salmon during our at-home trial.

How to Conduct a Food Trial

I have to say that the lack of information about food trials is one of the most disappointing thing about FPIES.  I really wish someone had told me sooner about the importance of introducing foods in a controlled way and the high likelihood that E would react to more than just milk.   But after my review of literature I realize that no one told me this because no one has studied it.   The data here were practically nonexistent.

Length of Trial

The question of whether or not you have to be exposed to an allergen to be “sensitized” to it is a hard one to answer (16), let alone how many times you might have to be exposed or how sensitized you have to be to react.  While it is generally believed that the initial reaction usually occurs on the first or second exposure (6), I only found one article that presented data to address the question.  In that study, it was observed that approximately 64% of infants reacted to cow’s milk within one day of regular exposure, 16% tolerated it for more than 4 days before a reaction and 11% tolerated it for 14-30 days before they reacted (109).    One other paper (6) indicated that the food needs to be removed from the diet for 2-3 days to see an acute reaction (specifically after chronic FPIES).   In general, when looking for a good food trial protocol we are told that “Data are limited and […] it is not possible to suggest a specific course of action applicable to all situations” (13).  So it seems that a reaction will likely occur on the first day but could occur after up to 30 exposures.  Weighing the pros and cons of a longer vs shorter trial period is tough.  Thirty is a big time commitment, especially if only four days are necessary.  But no one wants to be surprised by a reaction to a food they thought was safe… There may also be some merit to building a waiting period into a food trial to be sure that there won’t be a reaction when it is next introduced, which of course makes the trail even longer and there is no indication at which point to institute the waiting period.  

Dose of Food in a Trial

The best information available regarding the amount of food to give during a trial is presented in terms of oral food challenge protocol for FPIES.  The guidelines proposed by Dr. Sicherer (112) are the most widely accepted and used.  He recommends administering 0.6g of protein per kg of body weight (or 0.15-0.30g/kg when there was a history of a severe reaction) in increasing doses over 45-60 minutes as part of the oral food challenge for diagnosis (112).   This calculation takes into account the fact that different foods contain more or less of the protein, so it is a very scientific way to determine dose.  However, it obviously requires research to determine how much of the protein is in the food and then calculations of the appropriate dose based on body weight.  You must also remember that these guidelines were designed based on the assumption that there are trained medical personnel available during the challenge.  It may be prudent, therefore, to administer smaller doses when conducting an at-home trial.  I couldn’t find any recommendations in the scientific literature about how much of a protein to administer during an at-home food trial.

photoAll of this research left me feeling frustrated by the lack of good data and recommendations.  However, surprisingly,  I also felt better.  I finally had a decent understanding of what FPIES is and at least I knew as much as the doctors and researchers knew about when and how to try to challenge foods.   I didn’t have all the answers but I had more than I did the week before.  I was able to make some decisions to move forward but I also knew what I didn’t know. There was still going to be a lot of trail and error in my future but I felt a little more prepared to approach it an educated and scientific way, which alleviates just a little bit of stress from the process.

By the way, I’ve updated the FPIES Journal Articles page with these studies as well as a ton more, so stop over to check it out when you have a chance or if you want more information than I present here.  As always, let me know if you need help finding a specific paper or if there is a topic you’d love for me to research and write about  
Advertisements
6

First Oral Food Challenge – Clarity and Confusion

IMG_1649

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.

challenge warm packs

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!

IMG_1650

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.
2

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

IMG_1849

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.

 

IMG_2095

 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.

IMG_1587

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.

IMG_1818

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.
7

We never thought to look for a zebra.

zebra1

In medicine there is a saying, “when you hear hoofbeats, think of a horse not a zebra.”  It’s a reminder to consider the most common and probable diagnosis before jumping to the conclusion that there is something rare and exotic going on.   Sometimes when I look back at the first couple months of 2013 I become angry about the recommendations that were made and the symptoms that were missed.  But, FPIES is a zebra, a rare disease that isn’t the first diagnosis to be considered.  We were so busy assuming that we were hearing horses that we didn’t  think to look for a zebra.

The end of 2012 was rough.  On top of the constant fountain of spit-up coming from our son, none of us were sleeping.  E had never been a good sleeper but December 2012 was especially bad.  I have always been one of those people who really needs 9 hours of sleep to function.  On some nights I was lucky to get 4 fragmented hours.  And naps weren’t any better.  By four months, E was napping for about 35 minutes at a time three or four times a day.

It was not lost on me that just before I got pregnant I had done a rotation in a sleep clinic and had successfully treated insomnia in several adults.  I thought I knew a lot about sleep.  I was wrong.  So I started reading.  In my sleepless state I read at least 3 books and countless articles about how to get a baby to fall and stay asleep.  We attempted sleep training several times between 3 and 7 months.  Each time we started with controlled crying, letting him cry for a set period of time and then going in to reassure him.  It was awful.  After I left the room, I would hold my breath, watch him on the video monitor, and fight back my own tears.  He was so worked up.  And then he would vomit.  I had heard of this, babies getting so upset they they vomitted.  This seemed different, but doesn’t it always when it’s your baby?  He was so very upset and the vomit was forceful, an eruption that was clearly visible on the monitor.  When the timer went off, after what felt like years (but was really only 5-10 minutes), my husband or I rushed in and tried to console him.  He was always covered in vomit.  We would move him to a different, dry location in the crib, wipe his sad little face, and leave for another 5-10 minutes.  I think the worst part was that after he finally fell asleep he would start crying in his sleep.  We would go into him but he was still asleep, just screaming.  It was so sad.  We told ourselves that the sleep training was for his own good and our only chance of sleep.  But it didn’t feel right.  After a couple of nights we would give up.  And then, as the desperation set in, we would try it again.  The psychologist in me said that consistency is key.  But the mommy in me said that something was wrong, he was sick, he was uncomfortable, and I couldn’t leave him to cry in his vomit.  So we didn’t sleep and I continued to worry.

By the end of the year we were looking forward to a change.  E’s diagnosis with an IgE allergy to milk was scary – to think that exposure to dairy products could be fatal to our baby – but we finally felt like we were getting somewhere.  All we had to do was avoid milk and our son would start to feel better.  The allergist also suggested we avoid soy.  He hadn’t gotten better during the couple of days that he was on the soy formula, so it was possible that he had a soy allergy despite the negative test results.  I was weaning and he was transitioning to Neocate, a formula that is hypoallergenic.  We trained all of our family members in his emergency action plan and how to use the epipen.  Things were bound to get better soon.

We waited. I think we expected the spit-up fountain to just turn off one day.  It didn’t.  We were still worried, still stressed, still really really tired.  So I bought a book.  That’s what I do.  I read.  I think.  I research until I can understand and wrap my head around what is going on.  I started reading “Understanding and Managing Your Child’s Food AllergiesBy Scott H. Sicherer, MD, a pediatric allergist who is well respected in the field (I later learned he is an expert in FPIES, but that wasn’t on my radar at the time).

I spent all of the time and little energy I had learning about food allergies.  I was most interested in IgE allergies, after all that was E’s diagnosis.  But I’m a bit nuts and I have some sort of a compulsion that requires me to read an entire  book.   I can’t read select parts that seem interesting or skip parts that are irrelevant to me.  I have to at least skim the whole book.  You never know when you might need that other information, right? So I read about the symptoms of IgE allergies – the eczema, the stomachaches, the vomiting.  It all made sense and fit in with his diagnosis.  But I also read about non-IgE allergies.  I read about FPIES and thought it sounded like E’s symptoms, vomiting was a symptom here too, so was poor growth.  I didn’t think he had diarrhea (but who knows – baby poop is weird, right?).  And thank God he never tuned blue or went limp.  I decided it wasn’t a good fit, besides the doctors never mentioned that as a possibility.  I was grateful that we weren’t dealing with a disease that is hard to diagnose has dramatic symptoms.  I continued to skim until I got back to the “relevant” parts of the book. When I finished the book I felt better informed, but was still covered in vomit.

IMG_0602

A rare moment of sleep.

We had a follow-up appointment with the allergist in mid-January.  By that time E was only drinking Neocate but we were still seeing mass amounts of spit-up.  The allergist felt confident in her diagnosis of milk allergy and was not sure why he was still spitting up.  I cried.  I vividly remember holding E in my arms and staring out the office window to hide my tears.  I didn’t know what to do.  Why was this not working?  What was wrong?  How could she not know?  What were we going to do? When would I sleep again? I felt so defeated and helpless.

I was only slightly comforted by the fact that the allergist had a plan.  She wanted him to see a GI doctor and recommended thickening his formula with rice or oats to try to get it to stay down.  She also ordered an atopy patch test to get more information about the milk allergy.  She explained how the test worked and what we needed to do but didn’t give us her rationale for the test.  And I didn’t ask. I was too upset.  She was about to go on maternity leave so we planned to see someone else in the group to go over the patch test results, we didn’t want to wait until she returned to work to get answers.

I think it was in the car on the way home when I realized that I had read about the patch test, in the non-IgE section of Dr. Sicherer’s book.  I felt confused, maybe I was mistaken.  Then I thought back to the red flags I noticed in the FPIES section and wondered if the allergist was also thinking that it might be non-IgE.  She hadn’t mentioned it but maybe it was something she was thinking?  I reread those sections.  The patch test was definitely a test for non-IgE allergies, but it wasn’t widely used, was still considered experimental, and controversial.  I felt like I didn’t really understand the plan but I always believe in collecting as much data as possible.  So I made the appointment.

While we were waiting for E’s patch test and GI visits, I focused on what I hoped would be our solution – thickening his formula.  I had heard of other parents having success with this technique and I was willing to try anything.  Some quick internet research suggested that rice can cause constipation and gas.  I decided to thicken his formula with oats, trying to avoid adding any more GI symptoms to this poor kid.  Thickening the formula was a mess.  The formula was too thick for E to suck through the nipples we had.  I bought nipples designed specifically for thickened formula, but the holes in those were huge and the poor kid couldn’t keep up with the flow.  On top of that, making bottles became more complicated.  Our kitchen started to look like a chem lab with all of the powders, measuring spoons, and scales.  Don’t get me wrong – it would have been totally worth it if it had made a difference.  But it didn’t.  There was no change.  The high volume of spit-up continued, only now it was thicker.

Next was the GI appointment.  We were so hopeful that we would learn something, that they would finally tell us what we needed to do.  That they would have the answers for which we were so desperate.  That E would stop vomiting all the time, feel better, and sleep.

The visit was horrible!  The nurse practitioner that we saw was like the “what not to do” example in an empathy course.  She was terrible at listening and spent the entire appointment telling us stories of other children that spit up a lot.  I guess she was trying to normalize our experience, but she came off as rude and uncaring and totally unhelpful.  The doctor was a little more empathic and spent some time educating us.  He explained that because the upper GI in November was normal and he was already on a hypoallergenic formula,  the spit up probably wasn’t caused by anything physiological and probably wasn’t related to his allergy.  Once again he was diagnosed as a “happy spitter.”  By now those words made every muscle in my body tense up and my skin crawl. No one understood that E was not happy.  Happy babies don’t cry in their sleep.  He explained that the spit-up would likely stop once E became more vertical and his esophageal muscles strengthened, which should happen around 12-13 months.  The GI doctor didn’t think thickening his formula was necessary but didn’t think it would hurt and also wanted us to start to wean him off of the omeprazole.  He thought we just needed to wait it out.  I cried.  E was almost 6 months old and I wasn’t sure that I could do this for another 6 months.

Feb2013

The atopy patch test was in mid-February.  E and I went to the office on Friday afternoon and the patches were applied.  I was under the impression that he was just getting tested for dairy.  However, the order had been for dairy, soy, oat, rice, and chicken.  I thought that was odd but I’m always happy to have more data so I didn’t mind.  I’m not sure when it started to click but I some point I remembered reading that these 5 foods were the top FPIES allergens.  The nurse almost didn’t test for dairy because he had already tested positive in the scratch test.  Luckily, by this point in the process I had started to find my voice and insisted that she follow the doctor’s orders.  Our allergist was on maternity leave and couldn’t be consulted so all of the patches were applied.  But we were told to keep an eye on the patches and remove them sooner if we noticed a major reaction.  To make her point, she told me that sometimes children react so badly that their backs look burned.  Great.  Something else to worry about.

patch test

This is E’s back with the patches applied.

The test consisted of taping small, shallow cups containing the allergen to his back.  The cups were left in place for 48 hours.  We removed them and bathed E on Sunday afternoon and returned to the clinic on Monday for a doctor to read the results.  Over the weekend E developed a cold and also had a couple of episodes of projectile vomiting. Those episodes stuck out as different from the usual spit up, so we chalked it up to the cold and the allergist agreed.   Thankfully, there weren’t any burn-like reactions, but his skin wasn’t clear either.  The test showed a reaction for milk, a smaller reaction for soy, oats, and chicken and an “equivocal” reaction for rice.  Our un-trained eyes didn’t see much differences between the reactions, but we agreed that there seemed to be reactions to all of the patches. The results for milk, and even soy, were not really surprising.  But you can imagine how upset we were to learn that the oats we had been adding to his hypoallergenic formula were a possible allergen! The doctor wasn’t concerned, she was focused on the fact that he didn’t get worse when we added oats.  We were focused on the fact that he didn’t get better.  She suggested we try switching to rice for a week or so and then back to oat to see if there was a change.

As far as we were concerned, there had been a small reaction to rice and we weren’t interested in repeating our oat mistake.  However, I also knew that the best way to diagnose an allergy was with real exposure to the allergen.  Allergy tests aren’t perfect and there are false positives (and false negatives) all the time.  I had also knew that the test was not perfect, or even widely accepted so it was probably not the best thing to base all of our decisions on.  So we gave it a try. Nothing changed.  We even went back to oat, for about 5 days.  No change.  In a last ditch effort, we tried barley.  Still spitting up.  A lot.

By the middle of March 2013 my husband and I finally took control of the situation.  I had been reading a lot and was pretty sure we were looking at an non-IgE allergy, possibly FPIES.  The data supported this and many of the symptoms were consistent.  He was still spitting up soooo much, still seemed uncomfortable, still having trouble sleeping.  I knew he was still sick.  We weren’t making progress by only avoiding dairy and soy.  We needed to do more.  My gut screamed at me to stop exposing him to grains.  I finally listened.  We stopped thickening the formula and went back to straight Neocate.

At this point E was almost 7 months old.  We had seen 2 different allergists at one of the county’s top children’s hospitals and no one had mentioned non-IgE allergies or FPIES.  However, we continued to collect data. I don’t know if our allergist was starting to think it might be FPIES, or if she was trying to rule out FPIES, or if it didn’t even cross her mind.  I don’t know what she was thinking because she didn’t tell me.  I’m just glad that I am a researcher.  Glad that I was able to look at the data and make decisions.  I think it was at this point that I decided that on top of the dairy (and maybe soy) allergy, E had non-IgE/FPIES allergies to rice and oats and maybe chicken.  I still didn’t totally understand what that meant but we added those foods to our list of allergens to avoid.

We found the zebra.  We learned how to take care of the zebra.  And E started to get better.  Finally.

March 2013

4

“Happy Spitter” – The Beginning of Our FPIES Journey

_MG_9170

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.

IMG_1375

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.