8

Out of the Blue – Acute FPIES Reactions!

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After we eliminated grains from E’s diet (along with dairy and soy) things were great!  He had stopped vomiting, was gaining lots of weight (maybe too much), was sleeping well, and we were successfully introducing fruits, vegetables, legumes, and even meats.  The three of us had made it to his first birthday and celebrated with a big Curious George-inspired party and a safe cake made of coconut flour and lots of eggs.  Life was predictable, which is just the way I like it.  We were settling into a nice routine and starting to relax a little.

After the party we had a ton of bananas (I used bunches of bananas to anchor balloons for the centerpieces on the tables).  As they started to turn brown it occurred to me that I could turn them into coconut flour banana bread.    I found a recipe that contained a couple of new foods but I decided to make it anyway, with the intention of freezing it for when we were ready to do a trial. So I made two loaves.  They were just ok, but E wouldn’t know how good it could be so I hoped he would think they were delicious (I use this line of reasoning way too often).

Meanwhile, our allergist had given us the ok to start trying wheat.  About a week after his birthday, I gave him one piece of whole wheat rotini with his breakfast.  We didn’t notice any problems but wanted to take this trial nice and slow so the next morning I also gave him one piece of rotini with his breakfast.  We had a normal morning, he took a normal morning nap, and when he woke up it was time for lunch.  I can’t remember the circumstances but for some reason I didn’t have enough food to give him for lunch.  He ate some prepackaged diced mangoes and I felt like he should have something else.  I didn’t have anything to give him…except for the banana bread.  The new foods were unlikely to be allergens and it was right there, so I figured a small taste wouldn’t hurt.  Interestingly, E didn’t want to eat it.  I was perplexed.  How could he not be interested in a sweet, cake-like version of bananas? I practically forced him to eat a few bites, thinking that he was just thrown off by a new texture.  It was clear that he wasn’t enjoying it, so I cleaned up and moved on with our afternoon.  I had a big outing planned for that day – we were going to buy him his first real pair of sneakers and make quick stop at Whole Foods.

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How cool are those shoes?

I loaded him into the car and we were off to the children’s shoe store.  He was great and we scored an awesome pair of yellow Adidas that were on clearance.  Next was Whole Foods for some E-safe foods.  Honestly, it was a fairly big outing for us.  We still weren’t getting out much, so two stops in one window of wakefulness was pushing it.  By the end of the shopping trip I knew I was approaching nap time, so I was preoccupied with getting him into the car and getting home before he passed out in the car and all chances of a real nap were destroyed.  As I lifted him into the carseat, he spit up a little.  This was weird, I couldn’t remember the last time he had spit up. But it was just a tiny bit, it was actually more like bad reflux.  So I strapped him in and started the car.  We were barely out of the parking space and he really threw up.  I pulled into another space and got out of the car to check on him.  He seemed fine (except for the vomit on his shirt).  I was a bit concerned, this was unusual.  But now I really wanted to get home so I wiped him up and left the parking lot.

We made it to the first major intersection.  I was waiting for the green arrow to make a left turn, was the first car at the light with a growing line of cars behind me, and E threw up again.  And he started choking.  I couldn’t tell if he was having trouble breathing or not.  I pulled over as soon as I could.  I turned around to look at him and determined that his breathing was fine.  The carseat was at an angle that I think prevented him from getting the vomit out.  He was choking on his own vomit.  This was really sad and upsetting, but not as upsetting as the thought of his throat closing. He seemed ok so I kept driving.  He threw up again.  And now I was driving through a farm! The road was narrow, there was no place to pull over, and there were a bunch of cars behind me.  I was panicking.  When I finally pulled over, he had stopped vomiting and seemed ok.  I was really shaken up.  I tried taking some deep breaths and wrap my head around what was going on.  I was pretty sure this was an allergic reaction.  Did I need to use the epi-pen? What was he reacting too? Should I go the hospital?  It was all so stressful for me but E handled it like a champ.  He didn’t seem to be very distressed and wasn’t struggling to breathe so I decided to continue home, where I could safely get him out of the car and better assess the situation.

We finally made it home.  As I pulled into the driveway he started vomiting again.  This time I was able to get to him fast enough, rip him out of his carseat and stood in the driveway holding him so that he could get all of the vomit out and know that I was there for him.  It had been a while since I held my baby close while he puked all over both of us. It wasn’t necessarily something I had missed but I so relieved to have him in my arms that I didn’t even care.  He was relatively calm but really sleepy.  I was a mess – emotionally and physically.

I took E inside, stripped the pukey clothes off of him and noticed that his eczema was flaring.  By this point it was quite clear to me that this was reaction.  He had stopped vomiting and was breathing ok, so I didn’t think I needed to use the epi-pen, but I did give him a dose of Benadryl, put fresh clothes on him, and put him down for his nap.  He fell asleep right away.   Then I got changed, cleaned the carseat, left a message for the allergist, and tried to process what had just happened (all while staring at him on the video monitor to make sure he remained ok).

What was the cause of the reaction? We were in the middle of a wheat trial, but it had been about 6 hours since he had wheat.  And it was the same dose as yesterday – he hadn’t had any problems yesterday.  Could it be a reaction so long after the exposure?  Then there was the banana bread.  I went back to the recipe: coconut flour, bananas, eggs, Earth Balance, honey, sea salt, cinnamon, baking soda, and vanilla.  The only new things were cinnamon and honey.  Everything else had been passed in 4-7 day food trials.  When the allergist’s nurse returned my call it was decided that it must have been a delayed reaction to the wheat.  The likelihood of reactions to cinnamon or honey were low.  We also knew that he had trouble with other grains so there was a higher likelihood that all grains were going to be triggers (105).  She was also a little suspect of the coconut flour (despite the fact that he had coconut milk and coconut flour many times with no problems) so she recommended holding off on all grains for a while and doing a separate trial of coconut just to be sure.

I wasn’t completely satisfied with this answer.  It didn’t make sense that the reaction was so long after the wheat.  I remembered back to his last skin prick tests and a very small reaction to egg.  It was so small that it wasn’t considered positive, but it was enough for the nurse to mention it.  Could he be allergic to eggs even after eating them in his birthday cake?  Or was it something else?  Maybe he had been exposed to something else while we were at the shoe store or Whole Foods.  I just didn’t know.  I was still shaken up from the drive home and I continued to beat myself up for confounding the wheat trial.  I was also sad that wheat was off the table for a while.  But E woke up from his nap as though nothing had happened.  He seemed fine and we moved on, avoiding wheat and coconut.

A couple of weeks later we started an almond trial using almond milk.  E was doing great.  He drank the almond milk with no problems and showed no sign of a reaction.  Over about 5 days we worked up to replacing one of his formula cups with almond milk, which was about 6 ounces.  I wanted to give him more but didn’t want him to miss out on the nutrients in the formula and didn’t think he would drink much more milk on top of the formula.  So I decided to add almond flour to the trial.  When I had been searching for coconut flour banana bread, I had found a couple of recipes for almond flour banana bread so I decided to try one.  The taste and texture were much better than the coconut flour version so Jonathan and I were really excited at the prospect of a better grain-free flour.

However, E was not impressed.  I gave him the banana bread and almond milk for breakfast on a Sunday morning.  He played with the bread, put some in his mouth, and spit it out.  Weird.  I thought for sure he would love it.  Maybe he remembered that the last time he had banana bread he got sick? It seemed unlikely, he had gotten sick hours after eating the bread.  Maybe he just didn’t like his bananas in bread form.  It didn’t really matter.  I needed him to eat it so I could move on with the trial.  I also didn’t have a lot of time to spend on breakfast because we were going to a family reunion picnic that day and needed to finish getting ready and get into the car.  I practically shoved it down his throat.  We cleaned up from breakfast, dressed him in an adorable little outfit and strapped him into the car around nap time so that he could sleep on the way to the picnic.

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My wonderful husband even took the time to iron E’s tiny shirt for the picnic.

He surprised us by waking from his nap early and unhappily.  We had just gotten off of the highway and were about 10 minutes from the picnic when the vomit started.  It was a little bit of de ja vu, but this time wasn’t as bad – mostly because there were two of us and I wasn’t driving.  Jonathan was able to quickly pull into a parking lot and we got to him much faster than the time before.  His breakfast hadn’t included diced fruit so he didn’t seem to have as much trouble getting the vomit out (it was actually quite projectile) and so there wasn’t any choking.  He seemed fine after he threw up.  Luckily, we were still in the habit of traveling with an extra set of clothes for E.  Unfortunately the backup outfit wasn’t as fashionable and I wasn’t as prepared – my white shirt now had some unintentional “decoration.”  Jonathan and I were pretty shaken up by the time we got to the picnic but E acted like nothing had happened.  His eczema flared again so we gave him some Benadryl and tried to go about our day.

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E had a blast while we did our best to clean his carseat with baby wipes.  
Does this look like a little boy who just coated the backseat in vomit?

I tried my best to enjoy the picnic but I was already playing detective.  Maybe it wasn’t a reaction.  Maybe he was carsick.  That didn’t make sense though, we had taken other, longer car trips without any problems.  The vomiting and the eczema, along with the timing (about 2 1/2 hours after eating) indicated a reaction, but to what?.  Was it an almond fail? Was it something else?  Cooked bananas were a common denominator between this time and last time, but he ate a raw banana almost every day with no problem.  It would be almost unheard of for a cooked food to  cause a problem when a raw food didn’t (though it is not as unusual for it to be the other way around).  I went back to the recipe.  There were other similarities: eggs, baking soda, Earth Balance, sea salt, and vanilla.  I substituted the honey for sugar this time since I still wasn’t positive that the honey hadn’t been a problem last time.  All of the ingredients were in his birthday cake that he had enjoyed without any problems.  Ugh.  It was looking like an almond fail.  But again my gut said maybe it’s the eggs…

When I spoke to E’s allergist the next day, she wasn’t convinced it was the almonds either.  She thought that it was more likely that he was reacting to eggs on both occasions.  It was significant to her that he didn’t want to eat either version of banana bread.  She said that kids who are allergic to eggs tend to reject them.  This can happen with all food but her experience had demonstrated that it was almost always the case with eggs.  They were a common denominator in both banana breads and the most likely allergen in both.  She didn’t know why he had done ok with his birthday cake trial but said that sometimes it takes several exposures before a reaction occurs.  I had already been thinking it could be the eggs so I was glad we were on the same page.

We went back to the drawing board.  We did pure food trials of wheat and almonds, which E passed beautifully.  Much to my surprise he failed the controlled trial of coconut milk.  It didn’t make sense because he had been exposed to coconut on multiple occasions with no sign of reaction.  But the fail was clear.  I gave him a cup of coconut milk in the morning and he wasn’t interested.  He managed to drink maybe an ounce before he pushed it away.  When I gave it back to him he tried to hide it.  He was clearly not going to drink it.  By this point I knew that he somehow knows something we don’t when it comes to his allergens, so I didn’t push it.  About 2 1/2 hours later he was vomiting.

So within about two months E had his first three acute FPIES reactions.  Completely out of the blue and to foods that we considered to be safe.  These reactions were a game changer to me.  They were terrifying and they made us question everything we thought we knew.  I later learned that they were pretty much “classic” FPIES reactions, which typically occur 1-3 hours after ingesting the food and consist of profuse vomiting that is sometimes followed by lethargy and ashen color.  Sometimes diarrhea occurs within 2-10 hours (4, 111).  Like E, most children recover fairly quickly, within a couple of hours of the reaction.  However, up to 20% of reactions lead to shock that requires IV fluids (111).  Epinephrine and antihistamines are not generally helpful for FPIES reactions (111), so I don’t give him Benadryl anymore.  I learned some other important lessons: FPIES is completely unpredictable, reactions hit when you least expect them, it is possible to react to food after a number of exposures, food trials had to be treated like controlled experiments, and that I hope I never have to deal with an anaphylactic reaction (the FPIES ones are scary enough, thank you).  Most importantly, these reactions removed any doubt that E had FPIES.  And the list of allergens was getting longer…

 

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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 🙂

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*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.