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Dairy is a PASS!!!! (we think)

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I feel like I spent the last week just waiting for a reaction – scrutinizing every diaper, questioning every funny face, and generally being on edge.  I’m exhausted!

But there hasn’t been any projectile vomit! No vomit at all.  None.  I still can’t really believe it.

That being said, I still can’t say that I’m 100% certain that dairy is a pass.  There have been a couple of odd things that I’ve noted and that have concerned me (and my husband).

Here’s the dairy trial recap…

First, I’ll admit that I didn’t follow the trial protocol from the hospital.  Their protocol had E drinking 1 oz of milk for 3 days, then 2 oz for 3 days, 3 oz for 3 days, and 4-8 oz for 3 days.  I’ve spent a lot of time trying to come up with the best protocol trial protocol for E (and truly believe that every child needs their own protocol) and so I decided to modify this protocol to look a little more like our strict protocol.  I gave E 1 oz for 2 days, 2 oz for 2 days, 3 oz for 2 days, and 4 oz for 1 day.  Then we took a 3 day break.  We picked up with 4 oz for 1 day and 7-8 oz for 2 days.  The most important difference for us was the break.  E’s most recent reactions have come following a couple of days of not eating the food.  There isn’t much real data about the idea of a break, though it is mentioned in one article (#6 on the FPIES articles page).  From what I can gather, the idea is that there is sometimes a less intense, chronic reaction that may not be clearly identified, mostly because it’s all internal.  When you remove the protein for a couple of days, the body starts to get back to normal, but “remembers” the protein.  Then when it is sees the protein again it freaks out and you have an acute reaction that can’t be missed (i.e, projectile vomit).  I’ll admit that I’ve never noticed any chronic symptoms, like weird poops or an unhappy tummy leading up to the reactions, but I do know that he had egg, coconut, and crab multiple times and seemed to be passing them.  Then, after a break from the food – boom – vomit everywhere.  So now we always incorporate a break into our trials.  These last couple of reactions were on days 9-11.  So I aim to break after day 8 or 9.

Also, it’s helpful to remember that we never had a clear acute reaction to diary.

You can read the whole long story in a previous post.  The short version is that we had no idea why E was vomiting all the time and we were essentially poisoning him with milky bottles every two hours.  So he was always throwing up but he was always ingesting the allergen.  There were no food trials at that time and there was no waiting for 4 hours after he ate to see what happened.  It was a mess, quite literally – vomit everywhere, all the time.

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Notice the vomit stains and the formal bedtime attire because all other options were in the laundry.

So here we were.  23 months since his last exposure to milk.  We really didn’t know what to expect.  Thank goodness the skin tests were accurate and there was clearly not an IgE reaction.  That allowed me to breathe at least a little sigh of relief.

For FPIES, the 23 months without dairy exposure could have led to a couple of different outcomes. On the one hand, it should be long enough for his system to “forget” about the allergen and there could be no reaction ever again.  Or it could just be a long “break” and the next first exposure could be severe.  Or it could just be like a first dose of a new food.  He could slowly start to have a low-grade reaction, become more and more sensitized to the milk and then have a strong reaction at a later time (presumably after a break).

So we got through the first 4 hours with no vomit.  Another half-sigh of relief.  We could cross off the “long break leading to an acute reaction” scenario.  But we still weren’t in the clear.

So we moved on to day 2, 3, 4 etc.  I was still holding my breath.  There were a couple of things that worried me.  The biggest one was an unusual wave of fatigue/lethargy that would hit my rambunctious little boy at exactly 2.5 hours after his dose of milk.  To say that E is active and has a lot of energy may be the understatement of the century.  I swear he siphons his energy right from me.  He never seems to tire and can run for what seems like hours.  He absolutely loves being outside and starts campaigning to go out to play before I pick him up out of the crib in the morning.  So for the first couple of days as we approached, what I like to refer to as the “vomit window,” 2-3 hours after he has his dose of a possible allergen, the window of time during which we are most likely to see vomit, I have taken him outside to play.  (I’m no dummy, we finally just replaced the carpet that he stained with vomit as an infant – being outside was beneficial to everyone).  Each day I would open the door and he would take off. He would run and push his cars and shovel leaves.  One day we were even lucky enough to had a little bit of snow to play in.  He had a ball.  But then he would suddenly stop and want to go in.  One day he just laid down on the sidewalk.  One day he laid down in the middle of a busy play area, with other kids running around and over him. One day he threw his hands in the air and requested that he be carried inside.   Then he would spend the next half an hour to an hour laying on the couch with me or my husband.  On one occasion I thought he seemed a little limp, like  rag doll, as I took his coat off.  This behavior was concerning.  But he was fine otherwise, just kind of lethargic.  He wouldn’t complain about anything but he wouldn’t want to do anything.  After a little while he would jump up and seem to return to normal.  This was not typical E behavior.  In fact it was outside of the norm enough to set off red flags for both Jonathan and I, which is a big deal.  Jonathan is usually my crazy-meter.  His job during a trial is to remind me to keep things in perspective and to prevent me from getting worked up over nonspecific mild anomalies that I am starting to call symptoms.  But even he was concerned about this weird lethargy.

“Vomit Window” Fun!

So we were pretty much convinced that we were experiencing a slow, chronic reaction that we couldn’t quite pinpoint.  There were some other things, too.  A couple loose stools, but nothing scary and nothing consistent.  Maybe a little more gas than usual.  And then there was the rejection of the milk.  As early as the third or fourth day he started putting up a fight about drinking the milk.  He didn’t want it. When we convinced him to take a sip he made faces and sounds to let us know that he was not enjoying it (he may have a future in the theater).  I would hand him the cup and he would push it away.  We basically had to lure him into a TV trance and slip the straw into his mouth so that he would drink it without realizing it.  (Nothing like encouraging mindless eating in an impressionable child).  Thanks to Curious George we were able to get each day’s dose into him.  The rejection is something that we noticed with other fails, especially egg and coconut.  On the days that those foods led to acute reactions, he refused to eat them and I forced him (and later regretted it).  So this was another big red flag.

But still no vomit.  The doses continued to increase.  I continued to bite off what was left of my fingernails…

Finally we went into the 3 day break this past Tuesday, Wednesday, and Thursday.  E went to his grandparents’ house and I got some school work done.  It was an attempt at being a little more normal and it felt good!  But the whole time I felt like Friday was hanging over my head.  I just knew that Friday, the day after the break, day 9, would be biggest test since day 1.  But I also felt like if we got through Friday without vomit, we were probably in the clear.

So Friday morning I gave him his cup of milk.  He took it from my hand and took about 3 big sips with no indication that he hated it.  I couldn’t believe it.  After that it was a little trickier.  I handed it back to him and he refused.  I waited a bit, tried again and he refused.  I put the cup down and walked away.  He picked it up and drank some!  The little bugger would only drink the milk when I wasn’t looking.  He was totally playing me!  When I turned away he drank it as though he’d been doing it his whole life!

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Enjoying milk when he thinks mommy isn’t looking.

Then we waited.  I again arranged to be outside during the “vomit window.”  He was running and having a blast.  Then, about 2.5 hours after his 4 oz dose, he threw his hands in the air and wanted to be carried home (he had just run to the corner of our street with no indication that there was anything wrong).  I picked him up and carried him.  I noticed some funny faces and perhaps some reflux, he seemed to be swallowing down something that tasted bad.  I asked if he was ok and he responded “uh huh” (his typical response).  We went inside and he was quiet for a little while but then returned to normal.  Reflux is a little concerning but I didn’t see any vomit.  Definitely nothing projectile.  Later that day he had a little bit of a rash on his abdomen, but not eczema, and it didn’t seem to bother him.

I still wasn’t ready to breathe a sigh of relief.  Not yet.

On Saturday morning I gave him 8 oz of milk in his Cars cup.  I told him he had to drink at least down to Lightening McQueen’s headlights, which was at least 4 oz.  He drank about 7.5 oz with no argument and no drama.  He had a similar refluxy experience at 2.5 hours but he was in the car seat so it was hard to tell if he was lethargic too.  The rash was still there but hadn’t gotten worse.  Poops seemed normal…

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This morning, Sunday, I gave him another 8 oz cup.  He tried to negotiate with his dad to stop drinking when after he got down to the headlights, but Jonathan was able to get him to drink almost all of it again.  We were out and about again today during the window, but I didn’t even notice a bout of reflux today.  And the rash is gone.  He did have a yucky, loose, smelly poop at an unusual time.  But only the one and nothing else out of the ordinary.  Today was day 11.  We usually give E 12 doses before we call it a pass but he’s never reacted after the 11th dose…

I have no real concrete reason to believe that milk is a fail.

But I’m still holding my breath. All of these things make me not positive it’s a pass.

I know that FPIES isn’t always as pass/fail as we’d like it to be.  But we’ve been really lucky.  Our fails have always been really obvious.  We always get vomit.  We never give much credence to nonspecific symptoms that might be due to the food.  And we usually have a happy, healthy, weight-gaining boy.  Other parents are not so lucky.  They deal with all kinds of weird symptoms and have to constantly ask themselves if it’s related to what their child is eating.  They remove foods and hope it improves (sometimes it does and sometimes it doesn’t).  Maybe this is our initiation into a the elusive “chronic FPIES symptoms.”  Or maybe its just a pass and I am being a crazy hypochonriacal helicopter mom.

But we are going to go ahead and call dairy a pass.  For now.  We aren’t going to quite start giving him dairy willy-nilly yet.  But we are going to start increasing the amount he gets in a controlled, trial-like way.  We’ll keep an eye on it.  But we won’t completely and totally have to avoid it anymore.

Our sense of uneasiness is also complicated by the fact that tomorrow we will start all over again.  We have another challenge scheduled for tomorrow.  Rice.  It’s not ideal.  I’d like more time to explore dairy, but it is what it is.  We will move on to rice trials in the mornings and perhaps I will be brave enough to keep up the dairy in the afternoon, we’ll see.

So, dairy is a pass, we think.  We are pretty sure.  But we aren’t quite celebrating yet.  Something just doesn’t feel right and if there’s one thing that I’ve learned about dealing with FPIES, it’s to always trust my gut…

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E is practicing giving milk the “thumbs up” (still not quite there, though)

Any advice? Have any other FPIES parents seen this kind of pattern? Was it a reaction? Was it just adjusting to a new food? Am I just a crazy person? Is it bad to hold your breath for 2 weeks straight?

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

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

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

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

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

Global FPIES Day with E

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

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

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

FPIES Awareness Card

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

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

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

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

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

 

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 April 2014

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

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

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

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

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

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

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

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

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

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

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

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

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They didn’t always make it into his mouth…

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

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

Eating Birthday Cake

 
*I’m going to attempt to infuse some research wherever possible.  There isn’t much out there but I think it’s really important to acknowledge what we do know and let it guide our decisions in managing FPIES (and any other illness, really).  Clicking on the numbers will take you to the journal article page with the complete citation for each number.  I hope this is helpful.
7

We never thought to look for a zebra.

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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.

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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.

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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

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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.