2

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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6

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.