EM’s Journey with FPIES

Smith Kids (19)

My pregnancy and labor with Ella Mae was eventful.  I will spare you the details but she was definitely wild from the start.  I knew from the beginning she had a strong purpose to be in this world because she overcame a lot of obstacles to be here!

One of the most amazing moments of my life was meeting this precious girl face to face.  I only got to say a quick hi and they took her off because of a complication and had to do a little extra work on her but thankfully she was fine.  She’s been tough from the start!  She was a GREAT baby for the first 4 weeks and slept all the time.  I had never heard of a baby that slept that much!

When she was just 4 days old we signed the papers on our home in Helena, AL and I was busy unpacking while she was sleeping.  It worked out perfectly because as she slept, I made that house a home.  And thank goodness for those first four weeks because it wouldn’t have gotten done otherwise!

At around a month old something changed and she started crying a lot. She was inconsolable often and it progressively got worse.  I took Ella Mae to her two month check up with her big sister in tow and I was exhausted. There was no sleep at night, no napping when the baby napped and all day long I was trying to deal with a fussy baby and entertain Delaney.  It was a challenge.  The doctor casually said, “The baby is so much easier than her big sister isn’t she?” I told him “NO!” and surprised him! I tried to explain that my baby was miserable.  But she was growing and had gained more than they had expected her to so they called it all “normal.”  She was making up for the small birth weight and catching up quick.  He could find no reason for her fussiness and probably didn’t believe me when I told him just how bad it was.

Over the next two to three months, I kept treating her for a terrible diaper rash, and she started having horrible episodes of projectile vomiting and other GI symptoms.  I kept trying to explain these episodes to the doctor and how concerned I was, but they kept assuring me this is normal “spit up” no matter how forceful it may be.  Even family members who hadn’t witnessed the episodes would tell me everything Ella Mae was doing was “normal.”  I knew better.  I knew this was not ok and after several family members witnessed what Nick and I were seeing, they began to get concerned to.  The diaper rash started getting worse and worse even landing us in the ER one night.  I had gone to the doctor several times and tried every ointment and homemade concoction they could think of.  Nothing worked.  I am not one of those Moms who run to the doctor over every little thing.  I am actually quite the opposite and admittedly sometimes realize I should have gone sooner when I do finally go.  I know my kids are tough and I assume most things will run their course and everyone is going to be fine!  So for me to take this baby frequently to the doctor over nothing or something very little is very unlike me.

It finally got to the point that we couldn’t touch her skin in her diaper area.  Every diaper change she had to be rinsed with warm water, then soak in the sink with baking soda, patted dry and lathered in whatever cream we were trying at that time.  If we were to use a wipe or a wash cloth, her skins would sloth off and bleed, even with just the slightest touch.  And she hurt.  I felt like I was in the doctor’s office constantly begging them to listen to my concerns and getting nowhere.

Finally, at four months and several visits to her Pediatrician later, I finally got a referral to a GI Specialist.  The GI Specialist saw us a few times and had us do a week long trial of Elecare, which is a dairy free, hypoallergenic formula.  Ella Mae was exclusively breast fed and had never had formula, so it was hard for me to understand the reasoning behind his suggestion.  Wasn’t breast milk supposed to more allergen-friendly than formula?  Wasn’t I doing the best thing for my baby?  He wanted to see if doing this for a few days eliminated any of the symptoms she had while nursing.   I reluctantly agreed and was surprised to find that after a few days we could tell a difference, but she hated the formula and didn’t make it a full week on her trial.  The GI specialist told me to go dairy-free and follow up with him in a month.  Within just two weeks of me cutting out all dairy, we had a whole different baby.  She was sleeping better, she was less fussy and the vomiting and rash symptoms were fading.

It was very overwhelming to avoid all dairy.  Most people never realize how much dairy is actually in!  I had never been a label reader and never once had to restrict my diet prior to this.  It was a big adjustment for me, for our family.  But as time went on, she improved more and more and it became easier to handle the restrictions.  That miserable baby was gone and we had this happy girl!  What a relief!  But other than me needing to avoid all dairy, there was never any discussion of other things that might happen in the future.  We thought me avoiding dairy had solved all of our problems.  It was a very naïve way to think, but this was all new to us and we were just learning as we went.

Our next episode didn’t happen until she started her first foods.  I wasn’t really ready for her to start eating solid foods, but she was.  I knew the rice cereal was really just more a learning tool and nothing nutritional, and rice is such a low allergen grain that I thought it would be a great first food to try. I let her have a few bites and she was happy to be eating.  Two hours later she started vomiting profusely and non-stop.  Nick and I KNEW this was not normal.  She was lethargic and miserable.  There was no sleep that night.  We took a break from feeding her anything else for a while and I threw all the rice cereal out.  Something in my gut told me it was a reaction to that food, which doesn’t make sense when you read up on rice and babies, and why so many baby products are made with rice flour.  I shared these concerns with her GI Specialist. He released us and sent us on to an allergist with what we expected was an allergy to milk, but no answers for the rice issue.  My poor girl was only 7 months old when she had to have her first allergy prick test done.

This was my first ever experience with allergy skin testing, so I had spent some time researching and knew what to expect.  I watched as her back start reacting to one spot and it kept swelling.  When they came in I just KNEW they were going to tell me it was a dairy allergy.  Much to my surprise and confusion, she tested NOT allergic to milk but allergic to RICE. The nurse said in all of her years of testing she’s never seen a positive rice allergy.  Leave it to Ella Mae!  The allergist came in and started talking to me about FPIES and allergies.  Although she tested negative to the skin test for dairy, the allergist told me she did indeed have a food allergy to milk; more specifically to the PROTEIN in milk and in rice.  Though FPIES cannot be tested for, she had tested positive to rice.  That was a little confusing because when she consumed rice, she had a textbook acute FPIES reaction and not an IgE-mediated allergy response.  But since she tested positive in the prick test and we knew she reacted badly to consuming rice, we had to worry about both FPIES reactions to rice as well as your typical allergic reaction with hives, swelling and such.  My head was spinning.   I went home and threw everything in our house away with rice.

It is thought to be a very low percentage of children with FPIES that will actually react through breast milk.  Most articles you read on FPIES will say something like this, “FPIES reactions often show up in the first weeks or months of life, or at an older age for the exclusively breastfed child.”  Again, leave it to my Ella Mae to shake it up!  Some children will have many “trigger” foods and very little safe foods and others are little luckier, like Ella Mae, who still have lots of safe foods and only a few “trigger” foods.

We are still only certain of rice and dairy to be her triggers at this time and avoid those foods at all costs!   I can only imagine what would have happened had she been getting the milk product directly from formula rather than through me.  It could have been just like the rice episode, but worse. Many babies in that situation are “failure to thrive.”  They don’t gain weight or develop as they should.  That was part of the issue with diagnosing Ella Mae, she was THRIVING and it is unusual for babies to react while exclusively nursing!  Despite her FPIES, she had still been gaining weight because I was nursing her.  Though she was reacting to what I was eating, she was still absorbing enough nutrients.  The second-hand exposure was enough to make her miserable, but not prevent her from growing as she should.  I left the appointment with a lot of information, a lot more to learn, an overwhelming feeling and a huge sense of relief.  We had a diagnosis, and that was half the battle.  FINALLY, someone took me seriously and listened to me.  She told me that reaction always trumps testing, and that she believed me.  The words I needed to hear! I wasn’t the crazy mom claiming something was going on with my child without cause.

With our new diagnosis, I was determined to become an expert.  Rice was banned from our house. I would be hand making all of her food so I could start trailing foods and seeing what she could tolerate.  Fortunately, the next few months were pretty uneventful.  We were experts at reading labels at our house and making sure both she and I were avoiding dairy.  I decided I would nurse her for longer than my goal of 12 months because we could not transition her to cow’s milk, and I would need to work with allergist to figure things out.  We didn’t have any other major reactions until 15 months when I mistakenly consumed a product made with cow’s milk instead of a substitute milk.  It was horrible mistake and once I realized it was too late.  That baby was back from those early months.  If I thought I was careful before, I was even more careful after that. I never made that mistake again.

By her first birthday Ella Mae was in the top of the weight percentiles ranging from 75th-90th percent at check-ups.  But as the toddler phase started and with the diet restrictions she had, she started falling behind quickly.  She gained about 3 pounds from her 1st birthday to her 2nd birthday.  The constant drop was concerning so our allergist sent us for lots of blood work (8 tubes) to be sure things were ok.  Some mild concerns popped up but overall things looked good.  We were managing this FPIES, after all!  For us, major challenges really were the unknown reactions.  Everyone is unique and people with the same syndrome will often react very differently.  There are many days where we have “mild” reactions that we can’t piece together.  Did we miss something?  I often recall things that she has eaten throughout the day and things that her sister has eaten to see if there was any way she could have gotten something she wasn’t supposed to.  Ella Mae has had exposure to some foods she shouldn’t through normal toddler antics, and those are the worst.  When you KNOW she’s had something she isn’t supposed to, the waiting part is awful.  You wait and hope and pray for a mild reaction.  When “stomach bug” symptoms start, you start hoping that someone else in your house starts showing signs of it, too, or you are witnessing a full-blown FPIES reaction.

The great news is that a lot of kids grow out of their FPIES, though research suggests a variety of ages when it happens.  The bad news is there is currently no way to test other than to feed the child the food that makes them so sick and see what happens.  These are called oral food challenges.  When it comes time for Ella Mae’s she will be admitted to a hospital, hooked up to an IV, fed one of her trigger foods and we will wait to see what happens.  Because FPIES reactions can vary wildly and can have a 2-8 hour delay, they want these kids in a hospital for monitoring.  A severe reaction can lead to shock and that is a very serious condition.  If that were to happen, there is no better place to be than at a hospital.  We will have to do this at least twice for her two known triggers and will work with her allergist on determining the right time. Rice is less concerning to us because it is so much easier to avoid than dairy and also because of the positive skin test to rice she will have to have a negative skin test prior to completing an oral food challenge.

Smith Kids (17)One of the more challenging parts of her FPIES is that we cannot ban all dairy from our house like the rice.  Delaney, our oldest, needs it for a balanced diet and she is a very picky eater, so if I took away all things with cow’s milk she might just starve.  As Ella Mae is getting older, it is getting increasingly more difficult to keep her from trying to get to the foods her sister is eating that she cannot have.  Luckily, Delaney knows those foods make her sister very sick and is her biggest advocate at home.  She knows that any cup that has milk must be put in the sink, or given to me and never left just sitting out.  A lot of responsibility for a 3 year old, but she’s a champ at it.  She will often tell Ella Mae, “I am sorry you can’t have this but it will make your belly sick.”

Taking Ella Mae to birthday parties can be challenging.  Most of my friends are pretty accommodating but I try to not add to their stress of hosting a party.  I always call ahead to find out what will be served and try to simulate that as much as possible for Ella Mae so she feels “normal.”  She knows when the other kids are getting things she isn’t.  Sometimes if there are a lot of foods that she can’t tolerate, I will have to sit her away from the other kids while they eat and she is not a fan of that.  I have on more than one occasion avoided social gatherings just to not have the stress of it all.  Public kid-friendly areas are my WORST nightmare.  Those little rice puffs that most babies eat on the go are always on the floor.    I constantly scan the floor to make sure nothing is in her reach to put in her mouth.  Recently at dance class, I had a moment where I freaked out and then felt so bad.  I noticed something that definitely had cheese in it on the floor next to Ella Mae and I picked her fast and said “You are probably allergic to that!”  The mom closest to us looked a bit embarrassed and said it was from her kids and picked it up.  I felt bad for making her feel bad, but I can’t help it.  Her food allergies have turned me into a helicopter mom.  I am constantly hovering when it comes to food.

While we are very optimistic and hopeful that Ella Mae will outgrow FPIES, there is a very real possibility that she might be one of the kids who do not.  If not, as she gets older, we expect it to get easier because she will understand and be able to advocate for herself.  We know she will be fine, either way.  FPIES is rare and often scary but certainly not something we can’t overcome.  Knowledge is the best defense in something like FPIES, which is my purpose for sharing this story with you.

I find it interesting and worth noting, though I have not been able to find any other studies or research on the topic, that two of the biggest cravings I had while pregnant with her were fried rice and milk.  I have always loved fried rice but never been much on milk, except while pregnant with her.  It is very interesting that my two biggest cravings are the two things that make her so sick.  With no research done on that topic, I assume it to be an odd coincidence.   It is also pure irony that I have one child so willing to eat anything but so restricted and another who has no restrictions but refuses to eat but only a handful of foods.

So at the end of the very first GLOBAL FPIES DAY*on 10/14/2014 I hope that at least one person is aware of FPIES from all that I have shared today that had no idea about it yesterday.  All allergies are not created equal.  For the sake of the growing food allergy population, please be conscious of any kids around you that may have food allergies and be sensitive to their restrictions.

*This article was shared with The FPIES Foundation as written by EA’s mom and shared with friends and family for Global FPIES Day. 

 

 The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s).  Use of our Web site constitutes acknowledgment and understanding by the user that within our Website there may be links to other Web sites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more on our link policy at: http://fpiesfoundation.org/about-us-link-policy/ | The FPIES Foundation.

Page published:  August 13, 2014, Copyright © 2014,The FPIES Foundation