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A Season of Celebrations

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I am ready to celebrate! Sunday we declared rice an official pass and yesterday E passed the initial oat challenge!!  We still have to finish out the oat trial, but things are looking good!

If you recall, I was not looking forward to this December.  In fact, I was dreading it.  I was so focused on all of the challenges that we were set to face that I didn’t even think about all of the things that we would have to celebrate this season.  I was so caught up in the stress and negative aspects of FPIES that I totally forgot that I was going to get to spend Christmastime with a two-year-old!  Without knowing it, my own little elf has reminded me of what this time of year is all about.  So, in contrast to the post I wrote about a month ago, I want to share with you all of the fun that we’ve been having this holiday season, despite living with FPIES and enduring serial food trials.

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We kicked off the season with a dairy challenge the Monday before Thanksgiving. I know, how festive!  Despite the stress and uncertainty of the trial, we managed to have a wonderful Thanksgiving.  Jonathan’s sister and her husband hosted a beautiful family dinner.  They graciously offered to make it safe for E but we decided to err on the side of caution.  The possibility of mistakes or cross-contact was too high, especially during the dairy trail, so I brought a safe dinner for E.  It wasn’t necessarily a traditional Thanksgiving meal but he gobbled up his turkey meatball, mashed potatoes, applesauce, green beans, and corn bread.  He also ate in a highchair so that he was a little more removed from the table (and allergens).  I don’t think he even noticed that he wasn’t at the table or that his dinner was different.  He loved eating with the whole family, especially his cousins!

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After Thanksgiving, the countdown to Christmas began!  For as long as I can remember my mom has always made a paper chain to help us countdown to Christmas.  I was so excited to make one for E this year because he can finally understand what it signifies.   Every night before he goes to bed, he rips a link off and declares that we are “one day closer Christmas and Santa Claus will be here.”  It’s the cutest thing ever!

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After two weeks of trialling dairy we aren’t totally sure it’s safe and decided to retrial it after things settle down in January.  It’s disappointing to spend another holiday dairy-free but we are becoming pros now at finding substitutes and modifying traditions.  E is in love with the idea of “kissmiss coosies.”  In addition to the safe chocolate chip cookies, we have been experimenting with recipes for shortbread cookies (which are naturally egg-free!).  Baking and decorating the cookies is almost as fun as eating them!

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Next up was the rice challenge, which went so well we were able to combine it with a visit to see Santa Claus.  E has been so excited by the whole idea of Santa Claus and talks about him every day.  I think he was a little starstruck when he first met the jolly old elf in person, but managed to file his request for his “own kitchen” (which is all he’s been talking about!).  He was also lucky enough to get a private visit from Santa Claus who arrived at his Grandi and Grandad’s house via firetruck!  The icing on the (allergen-free) cake was definitely the email that he received from Santa last night.  Santa sent a video that announced that E had made it to the nice list!  We have watched this video about 10 times already and each time E gets more and more excited!

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We’ve also been spending time watching some classic Christmas TV specials and, of course, choosing and trimming our Christmas tree.

E’s excitement about Christmas and Santa Claus has absolutely been contagious.  I think actually at this point I might be more excited for the big day than he is.  I can’t remember the last time I was looking this much forward to Christmas!  Seriously, I’m giddy.

When you are in throes of FPIES, or any other stressor, it’s hard to step back and remember that this is not the only thing going on in your life.  The holidays are full of parties that center around food (food that is full of dairy, egg, and shellfish).  So, having a child with food allergies can be stressful.  It means more planning.  It means more work.  It means constant vigilance.  But it also means that we will spend lots of time surrounded by people we love and who love us.  It means that E will get to hang out with his family, many of whom we don’t see enough.  Sure, some traditions have to be tweaked, but E is two! He doesn’t know that there are cookies that we’ll omit from our baking menu this year.  He doesn’t care that he can’t partake in my dad’s famous Christmas Eve shrimp scampi or Aunt Jean’s lasagna.  He’s never had those things and would probably even prefer a peanut butter and jelly sandwich.  I’m definitely guilty of mourning the things he can’t do and I love that he is always ready to remind me of all that he can do and what’s important to him, and what’s really important about the holidays (hint: it’s actually not the food).

I hope that the joy of our Christmas season can bring hope to those of you that are in the thick of life with FPIES or any other challenge.  We’ve had so much fun watching E getting excited for Christmas and enjoying all that comes with this time of year that we’ve been able to shift our focus away from FPIES (even though we were in the middle of some pretty serious food trials).  The opportunity to take a step back and remember that there is so much more to life than FPIES has been a bit of a Christmas gift (and lesson) to me.

Thank you for celebrating our passes and Christmastime with us.  I wish you the joy and excitement of a two year old on Christmas and a happy and healthy new year full of your own celebrations!

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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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Dairy Challenge Day 2 – So Far, So Good…

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I’m pleased to report that yesterday’s hospital-based milk challenge was uneventful!!

Everything went as planned and maybe even better than I could have hoped.  People are often asking about what the challenge entails so I’ll give a brief overview of our day (I’ll do my best to make to make this post less boring than the actual day).

Once we were registered and assigned to a room and nurse, E’s height, weight, blood pressure and pulse ox were measured and the nurse listened to his lungs.  This was actually a little nerve-wracking for me because E had a pretty bad cold last week and still had a little bit of congestion and a cough.  His pulse ox was a little low and his lungs weren’t completely clear.  The nurse said that she didn’t know if the doctor would move forward with the challenge.  Thankfully, the doctor hesitantly agreed to do the challenge since it was an FPIES protocol and there wasn’t really any concern that the food would cause respiratory distress (like there would be if it was an IgE trial).

Once E was cleared to move on, it was time to have the first dose.  This was E’s first trial without an IV.  Before his soy and barley challenges the IV team placed an IV so that they were ready in case the food caused excessive vomiting that resulted in dehydration that required IV fluids.  Placing the IV was time-consuming (we had to wait for the team to arrive and then actually get it placed and secured) and traumatic (just imagine being a year old with tiny veins and being held down while someone sticks a giant needle in your arm multiple times trying to find the small veins).  I always found the IV reassuring but E never needed it, even when he failed the soy challenge he recovered quickly and without intervention.  So his allergist said that he didn’t need it this time.  Without the IV the challenge got off to a much better start!

He got his first dose – 10 ml of lactose-free milk – at 8:50 am.  He sucked it right down and seemed to really enjoy it.  About 20 minutes later the nurse rechecked his vitals and his skin and he was given his second dose – 20 ml of lactose-free milk – at 9:15 am.

IMG_3598 First taste of milk!

Then we waited.  E watched some Curious George, played in the playroom and enjoyed the new car we bought for him.  An hour after his second dose he was able to eat and then he went back to playing.  He was so incredibly well-behaved.  He had a great time enjoying the different toys in the playroom and playing with the other kids who were also having challenges.  During his previous challenges his vitals were rechecked every 20-30 minutes.  This time the nurse basically just kept an eye on him to make sure he seemed ok, without getting any actual data.

I knew the 2-3 hour mark was E’s typical reaction window.  So at about 11:00 I convinced him to have some quiet time, laying on my lap while watching more Curious George (he has a bit of an obsession).  Several times during the next hour I caught myself holding my breath, but E seemed to be doing ok.  At about 11:30 he got squirmy and at one point he flinched as though he had a really bad stomach cramp.  I prepared for the vomit but it never came.  I asked him if he was ok and he gave me his standard “uh-huh.”  I don’t know if he had some discomfort in his belly or if I was just being crazy and hyper-viligant.  He didn’t seem quite right but still no vomit.

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Cuddling during E’s typical reaction window – no vomit!

By noon he wanted to get back to the playroom, where he spent most of the rest of the time we were there, taking occasional breaks for snacks.  He had one bowel movement before we left that seemed a little unusual – slightly runny. It was different enough to make me notice but not enough to make me overly concerned.

At 1:15 E was discharged with instructions to continue the trial at home for the next 12 days (1 oz of milk for 3 days, 2 oz the next 3 days, 3 oz the next 3 days and then 4-8 oz the next three days).  We were told to continue to watch him closely for the rest of the day and to call the on-call allergist if there were any concerns.

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Someone was very happy that he didn’t react to milk!

I’m calling milk a “preliminary pass.”  It’s a really good sign that he didn’t have a full acute reaction.  And he didn’t have any signs of an IgE reaction.  But there were those couple of things that made me wonder if something was going on that we couldn’t see.  I’m not going to celebrate until we are through the next two weeks.

The rest of the day was pretty normal.  E was sound asleep before we left the hospital’s parking garage, but it was nap time so that wasn’t surprising.  He was a little hyper last night, but that’s not too unusual.  He slept well and woke up at about his normal time this morning.

At 7:30 this morning I have him an ounce of lactose-free milk.  He didn’t seem to enjoy it as much today but drank it all anyway.  Then we went about our day.  Ok, I’ll admit, I slightly manipulated our day so that we were home and playing outside during the time period with the highest likelihood of vomit (we just bought a new carpet to replace the one that was destroyed by vomit when E was a baby).  He generally seemed to be fine.  The only odd thing that happened was that while he was playing outside at one point he just laid down on the sidewalk.  He’s usually incredibly active and has more energy than I could ever hope to have, so this was really weird, but not really indicative of the reaction.  He was also very whiney during our trip to the grocery store this morning.  But, honestly, he was just acting out the way I felt about going to the grocery store today.  We’ve had a crazy couple of weeks with multiple colds, an unexpected house hunting blitz, and a food challenge.  I think we are all pretty exhausted.

We have two days of drinking milk without incident.  This is huge!  E may have actually outgrown his dairy allergy!  I’m still afraid to get too excited, but I’m proceeding with cautious optimism.  I do think it’s safe to say that he does not have an IgE milk allergy! It seems that our epi-pen carrying days are over! That is super-exciting and a huge relief!  FPIES sucks but it isn’t nearly as scary as an IgE allergy.

By the way, we were also a little relieved that the offer we put in on a house was rejected in favor of a higher offer.  It was a great house but I’m really glad that I don’t have to spend the next two months packing on top of everything else we have going on.

Thank you all for your thoughts and prayers.  Please keep us in your thoughts as we continue our at home trial.  I’ll keep you posted.

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A Season of Challenges

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We are stocked up and ready to go for the first challenge – milk, new cars, and a bravelet to remind mommy to “be brave”

E was diagnosed with his IgE milk allergy on a Friday afternoon, the Friday between Christmas and New Year.  The allergist appointment and events of that night were a stressful whirlwind of emotions and logistics.  Despite our feelings of anxiety and fear related to the fact that milk was equivalent to poison to our four-month old, we had a limited amount of time to fill the prescription for the epi-pen and figure out how we were going to get our hands on Neocate (let alone pay for it) before we went into another holiday weekend.  On top of all of this we had a baby boy who was totally off of his schedule, hungry, and still wondering why we let a stranger scratch his back.  At some point that evening I called my mom to fill her in.  She was anxiously awaiting the results of our appointment and I needed to process.  I told her about the allergist’s impressions and the scratch test and learning how to use an epi-pen and the new formula that was going to change our lives.  And I mentioned that the next time E tried milk it would be in the hospital.

It’s no wonder that in all of the chaos of that night and the relay of information (that I didn’t even fully understand at the time), that there were some miscommunications.  A couple of days later my sister called me confused, “Mom said that E will have to try every new food in the hospital, is that true?”  I explained to her that it was only milk that he would have to try in the hospital and that it would be ridiculous to have to try every new food in the hospital.  He was only four months at that time but the allergist had already told us that new food could be introduced when he was ready, while avoiding milk.  We laughed about the miscommunication and the absurdity of trying to feed every single new food to an infant in the hospital.

Ah, ignorance was bliss.  At that time I had no idea how complicated our relationship with food was about to become.  After that E continued to have chronic FPIES reactions as well as several acute reactions.  We learned that we do indeed have to introduce new foods in a very controlled and drawn out way and that every new food has the potential to be an allergen.  While we are able to introduce most new foods at home using one of our own food trial protocols, we also have two clinic-based food challenges under our belt (neither one for milk) and we are gearing up for 3 more before the end of the year!

Starting today we will embark on 6 weeks of food challenges/trials.  We will go to the hospital’s out-patient clinic every other week for E to have his initial dose of dairy, rice, and oat.  If he passes the first day, we will complete the rest of our two-week food trial protocol at home.  These are the allergens that we’ve known about the longest.  The ones that pretty much define E’s FPIES.  I’m super-nervous and plan to be super-strict about the trials.  And we are doing all of this over the holidays!

You know, because it isn’t stressful enough to take your food-allergic, curious toddler to holiday parties and dinners hosted by other people.  Now we’ll be doing it in the midst of food trials, when an accidental exposure will cause even more stress and confusion than usual.

Oh, and just for a little extra excitement, we made an offer on a house last night. So we might be moving during all of this.

You’re right – we probably are crazy. But these appointments were the earliest we could get.  We made the appointments in September and the first available was November.  We didn’t want to have to wait any longer than that.  E has been avoiding dairy since December 2012 (about 23 months) and rice and oat since about March 2013 (about 20 months).  His scratch tests have been negative for all IgE allergies (including dairy) for the past 18 months.  We are well over the 12-18 months of avoidance that is generally recommended and we are eager to find out if he is still allergic.  I feel like I need know.  I need to know if I have to continue to be so paranoid around these foods.  I need to know what we are dealing with.  And the only way to know is through a challenge.

I have no idea how the challenges will go.  I vacillate hourly between daydreams of passing the challenge and sharing ice cream with my son and preparing myself for the devastation of a fail.  This is our third challenge in the last year.  We know the drill.  We know where the clinic is, where to park, how to check in.  We know the procedure, that we’ll wait in a waiting room (where they will be irritatingly be playing Spongebob on the TV) until 8:00, when a nurse will take all of the families up the the clinic.  E’s vitals will be taken, we’ll be assigned to a room, we’ll meet the attending.  E’s allergist decided that he doesn’t need an IV this time, so hopefully he will face less trauma and get his first dose of the challenge food earlier that he has in the past.  We have new cars to play with and all the Curious George episodes on an iPad. Hopefully we can keep my active little boy busy and happy all day in a cramped hospital room

So far we are 50/50 – E has passed a challenge and failed a challenge.  We’ve experienced the stress and disappointment of a fail and the joy and relief of a pass.  We’ve left the hospital at 4 pm in different clothes, 4 hours after a reaction that soaked both E and I in vomit.  And we’ve left at 2 pm, an uneventful 4 hours after E ate a dose of barley.  But I can’t predict the outcome of today’s challenge.

To say that I’m anxious is an understatement. For the past two years I have treated a glass of milk near my son as though it was a loaded gun. Today I will put on a happy, excited, encouraging face and watch as he drinks milk. I can’t ignore that at one point he tested positive for an IgE allergy. It’s possible a fail today could result in an anaphylactic reaction, not “just” an FPIES reaction. It’s unlikely, but possible. I know that he’ll be safe. He will be watched closely by medical professionals as well as his father and me. But I’m still worried.

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Waiting for the first dose of milk

So, if you have a minute today, we would really appreciate any prayers, positive thoughts, good vibes, etc, we’d really appreciate them. I’ll do my best to post an update tonight or tomorrow.

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Got (Non-Dairy) Milk?

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As we are in the process of saying good-bye to Neocate, one must ask the next logical question: “Now what?”

My son is a creature of habit.  I have always worked hard to provide him with a predictable routine that I think he really appreciates.  Even before he could walk, when Dinosaur Train ended he would crawl over the stairs and start making his way to bed.  Although even E eventually got tired of rewatching the same episodes of Dinosaur Train over and over and over and over, he is still very much enamored of his three “cups” a day.  So, what should we put in those cups?

A couple of months ago E’s dietician told me that when children have to avoid dairy she typically recommends soy, followed by oat or hemp milk.  She said those are the “milks” that are most like dairy milk.  She was specifically referring to amount of fat and protein, which support growth and brain development and are the most important components of milk for one to two-year-olds.  Unfortunately we didn’t get around to trying hemp milk until last month, which wasn’t a big deal because E was still getting everything that he needed from the Neocate.  But I was curious about whether hemp milk would still be best now that E is over two years old, an age when pediatricians recommend switching to 1% or nonfat milk anyway.

I found surprisingly very little about which type of “milk” is the best substitute for dairy milk in toddlers. I actually couldn’t find anything in the medical literature! (Admittedly I am not a nutritionist or dietician and may have been looking in the wrong places, so if you know of any published papers, please share!).  There are several websites and blogs that discuss the merits of various “alterna-milks,” but most are written with the assumption that an adult will be using them.   There were two sites that seemed to give good information about milk alternatives for children (KC Kids Doc and Amazing and Atopic ) and I encourage you to read what they have to say.

For my own edification I wanted to compare all of E’s “milk” options side by side (have I mentioned that I tend to over-research?).  And because this question comes up all the time among parents of children with milk allergies, I even included the “milks” that aren’t safe for E right now.  I’ll admit that this is a quick survey of some of the most common “milks” on the market.  I just chose one brand for each type, so it is possible that the nutrition information can change from brand to brand.  It is also important to always check the ingredients.  For example, the Tempt Unsweetened Original Hemp Milk is the only rice-free version of hemp milk that can find!

The chart below includes the basic nutrition information for each of the major types of non-dairy milk, as well as whole and 1% cow’s milk, to give you some perspective.  All of the information is based on a serving size of 8 fluid ounces.  The daily recommended values (DVR) are the ones provided by the manufacturers, so remember that they are based on the recommendations for adults.

Non-Dairy “Milk” Comparisons

Click on the picture to open a more readable .pdf

milk chart

Most people think of calcium as milk’s most critical component. The companies that make “alterna-milks” are well-aware of this and are happy meet that requirement.  It seems that all types of “milk” are fortified to ensure that they have at least as much calcium as cow’s milk, often more.   So, I don’t think it makes sense to base my decision on calcium content alone and looked closer at the rest of the nutrition information, like ingredients, calories, sugar, sodium, fat, and protein, as well as the nutritional “perks” provided by some of the “milks.”

The plant-based “milks,” tend to have fewer calories than whole cow’s milk. However, the alterna-milks require more ingredients to achieve a cow’s milk-like taste. This often includes sugar or another sweetener (like brown rice syrup). So, watch out for sugar (rice milk and oat milk have way more sugar than others). The plant-based milks also require some sort of thickener, like carrageenan or xantham gum. I’ve heard of these additives causing reactions in some FPIES kids so make sure you keep that in mind if you fail a milk trial (i.e., it might be the carrageenan not the almonds that are the allergen). Carrageenan is pretty controversial but that is beyond the scope of this post. As far as I’m concerned, there isn’t enough evidence that food-grade carrageenan is harmful and it’s so pervasive in alterna-milks that trying to avoid it isn’t worth the aggravation. We already avoid so many things that we know will hurt E, I’m not interested in adding poorly supported “maybes” to the list.  We’ll just hope that future research doesn’t come back to point out that I’m an awful mother for poisoning my child with carrageenan. Obviously, this is a personal decision so please do your research.

If you are looking for a beverage that has a nutrient makeup similar to milk, soy is the way to go. It has the same amount of protein as cow’s milk.  The calories are similar to 1% milk and it has approximately the same amount of fat as 2% milk (not shown on the table).  All this with less sugar, cholesterol, and sodium.  But soy is controversial too. I’m not well-versed in the GMO and phytoestrogen issues related to soy. E is clearly allergic and so we generally keep it out of the house. Again, do your research, talk to your doctor and/or dietician, and decide for yourself whether the benefits are enough to outweigh any possible risks.

       

While we are on the topic of “milks” that aren’t an option for E right now, let’s look at rice and oat milk. These two have almost as many calories as whole milk with the about the amount of fat as 1% milk.  They have more sugar and significantly less protein (though oat milk’s 4g of protein is pretty high compared to the other options).  They do not boast any additional nutrients, either.  Another no-no for us, coconut milk, has far fewer calories but more fat and less protein.  I’ve gotta say, the stats here do not make me sad that they aren’t options for E right now.

We’ve been drinking almond milk for about a year. It’s been really helpful as a milk substitute in recipes (I’ve used it in everything from cupcakes to mashed potatoes) and I like it in my cereal. It has a mild and slightly nutty flavor and I never notice a difference in recipes but would rather skip a latte than use almond milk (yuck!). We tried it as a way to test a tree nut and get a milk substitute.  I never cared much about the nutrition stats because E was still getting everything he needed from Neocate and almond milk was never meant to provide him with everything he missed out on in cow’s milk.  But now I wondered how it stacked up.  It’s really low in calories and fat. It has no sugar but only 1g of protein and is higher in sodium than the other options.  It does include bunch of vitamins and minerals including 50% of the (adult) daily recommended value of vitamin E. I feel pretty good about using it daily (for E and me) but I don’t think we can rely on it solely and, because of the low protein, I definitely wouldn’t have been comfortable using it in his cups before his second birthday.

We’ve recently added hemp milk to our repertoire. I think it’s creamier than almond milk but also has a stronger flavor. Even the unsweetened original flavor has added vanilla. Vanilla is one of E’s favorite flavors, making hemp milk an automatic winner in his book. As I mentioned before, it was recommended by E’s dietician so I expected it to compare well to the other milks. And it does. It has more calories than almond milk but not as many as cow’s milk. It is the alterna-milk with the most fat, actually the same amount as whole milk!  This is good for the brain development of one-year-olds but I’m not sure that my 95th percentile-for-weight two-year-old needs all that fat. The good news is that it’s supposedly “good fat” and has a lot of omega 3 and omega 6 fatty acids.  It has no sugar and a respectable amount of sodium but just an ok amount of protein (2g).  My favorite thing about the hemp milk is that it’s safe for E and he loves it.  The other stats make me comfortable serving it to him on a daily basis but I’m still happy that he had the protein of the Neocate until age 2.  It’s vanilla flavor makes me hesitant to try it recipes.  I assume it will be ok in sweet recipes but I don’t know how it will hold up in savory ones.  Oh, and it also failed the latte test 😦

           

Out of curiosity I added cashew milk and flax milk to the list.  E passed a cashew trial this summer so I know the milk would be safe for him.  However, that seems to be one of its few positives.  Another one is that it is low in calories, but it is on the high side for fat and has no protein.  Flax milk, on the hand looks like a winner!  It’s low in calories and fat (which might make it a poor choice for the under-two crowd) as well as sugar and sodium.  BUT it has 5g of protein!  That’s higher than any of our other options.  It also contains omega 3 and omega 6 fatty acids.  I haven’t tasted it so I can’t report on that.  However, flax milk really does seem like the best option.

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So, what will be in E’s cups? We decided to let him decide – between almond milk and hemp milk.

These are the two that are safe for him and I feel comfortable with the stats. They each have their pros and cons and I don’t feel like one really wins in the nutrition field.  As far as taste, hemp seems to have E’s favor but almond will be better to have around for recipes.  The hemp milk is sold in smaller containers that are about half the size of the almond milk and the same price, so the almond is easier on the wallet.  They are both available in shelf-stable versions, which is nice for stocking up.  I’m also really excited that the shelf-stable almond milk is sold in 11oz containers.  This will be great when we are on the go!  I like the idea that E gets to choose, I try to allow him autonomy as much as possible and this is one more way that he can feel in control of his diet.  We’ve only been doing this for a couple of days but so far he doesn’t seem to favor one or the other.  I think it really depends on his mood, just like what you drink depends on how you are feeling at the time.

I’m kind of bummed that we tried hemp milk instead of flax milk.  I really think that would be the best version and if E passed it (and the taste was ok) I might consider that as our primary milk.  However, as my husband so eloquently said, “we don’t really need him to have another weird milk right now.”  He’s right.  We have two good “milk” options and other foods to try.  I don’t really see a compelling reason to push another version of milk.  Also, we are just over a month away from E’s cow’s milk challenge (eek!).  If he passes milk and likes it we’d likely just switch over to cow’s milk anyway.  If he doesn’t pass maybe we’ll give the flax a try, but I’m really trying to be optimistic about a pass

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                                        I love seeing this little boy with a (hemp) milk mustache!! 

mik mustashe

 

So, what are your thoughts? What “alterna-milks” do you use?  Have you tried flax milk?

Remember, this is just my analysis.  I’m not qualified to make recommendations but I hope that sharing this information will help to give you an idea of what’s out there and how we made our decision.  Please talk to your child’s pediatrician, allergist, gastroenterologist, and/or dietician so that you can make the best choice for your child.  Good Luck! And (as always) please share any additional information in the comments section.
3

A Bittersweet “Last Time”

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

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

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

photo 2                                                              Last 22 oz pitcher of Neocate!

Let me explain…

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

That was last time that feeding my infant was easy.

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

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

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

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

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Loving his cup of Neocate at about 9 months

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

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

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

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

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

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

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

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

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

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

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

 

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“Cheers!”
5

Research Revelations about Timing Food Challenges & Conducing Food Trials

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

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

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

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

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

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

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

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Waiting for the IV Team at E’s Soy Challenge

Best Timing for an Oral Food Challenge

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

Solid Food FPIES (Rice and Oat)

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

Cow’s Milk FPIES

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

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

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

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

Soy FPIES

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

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

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

How to Conduct a Food Trial

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

Length of Trial

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

Dose of Food in a Trial

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

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

By the way, I’ve updated the FPIES Journal Articles page with these studies as well as a ton more, so stop over to check it out when you have a chance or if you want more information than I present here.  As always, let me know if you need help finding a specific paper or if there is a topic you’d love for me to research and write about  
2

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

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

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

 

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 April 2014

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

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

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

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

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

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

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

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

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

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

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

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

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They didn’t always make it into his mouth…

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

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

Eating Birthday Cake

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