FPIES: A Tentative Diagnosis

Dr. Cecilia listening to her baby's bowel sounds

At the beginning of May, I met with a new allergist for Cecilia.  Dr. Casper was recommended by a lot of people in some FB groups of which I am a part, and I was not disappointed.  He really listened to me, looked through pictures of Cecilia's rashes, took notes, asked questions, and validated many of my suspicions about unsafe foods following the skin prick test.  He even gave me his e-mail address at the end of the appointment and told me I could message him if I wanted him to look at a rash picture or had a question.

I could not get a good pic of her skin prick test.  Here is a portion of her back.
The large hive to the right of the #1 is her reaction to mustard.  It was her worst one.
Almond was the next biggest with all others being tiny.

When Dr. Casper was talking to me after the test, he was talking about some different types of allergy responses in the body.  He mentioned we could be dealing with Food Protein Induced Enterocolitis Syndrome, or FPIES for short.  To be honest, I brushed this idea off because I knew FPIES to be a delayed food reaction in which the child vomits profusely sometimes to the point of shock, and Cecilia definitely never experienced this.

When J saw the list of foods I needed to avoid, he said, "What are you going to eat now?"  I really wasn't sure, but I knew I felt renewed energy because I had a guide.  I eliminated these things and saw improvements in Cecilia.  Her skin was less rashy, and she seemed less gassy.  Four days after testing, I gave Cecilia a small slice of peach because I wasn't convinced that she wasn't allergic, despite the skin prick test saying otherwise.  Sure enough, she immediately got hives on her face.  The next week, I wanted to test out apricots.  I had a baby food pouch that was apricots, carrots, and pears.  I knew pears were safe, and I thought carrots were probably benign.  Cecilia immediately got hives on her face after eating nearly the whole 3.4 oz pouch.  Add apricots to the unsafe list!

It was hard to get a good picture, but you can see
a few hives from the apricots.

The morning after eating this baby food pouch, Cecilia woke very early.  She was incredibly clingy and fussy, which I assumed was because she was still tired.  I didn't know what was wrong, but I knew she was driving me crazy.  She wouldn't eat, wouldn't sleep, and wouldn't play; she just wanted to nurse constantly and threw major fits. I thought maybe her teeth were bothering her and may have given her some ibuprofen.  Then she pooped and seemed to feel better.  Just before we were leaving to go to the store, she pooped again.  Twice in one day is unusual for her but not unheard of.  I thought for sure she'd be doing great at the store now. She always hates being confined in the shopping cart, so her fussing in the cart wasn't out of the ordinary.  Not too long into our shopping trip, she started grunting and making a funny face.  Then she said "poop", and I knew I needed to get her out to let her poop.  She went over to the shelf, squatted, and pooped.  At this point, I was praying I had enough wipes because I hadn't refilled them in awhile; she rarely poops in public.  Let's just say it was a disgusting diarrhea mess that required a change of clothes for Cecilia.  There was visible blood and mucus present, and her whole bottom was bright red.  She was in a great mood following this epic bowel movement!  She went on to have another diarrhea poop when we got home, which leads me to think she was potentially having a reaction to the carrots in that baby food pouch.  Looking back at earlier poop pictures when she was an infant (yes, I have many, many poop pictures) confirm this suspicion as there are pictures of a diaper filled with carrot chunks and bloody mucus.  I guess back then I was looking at things in my diet that are considered top allergens.  I wasn't looking at carrots!!

How does all of this matter?  Well, after a couple more similar reactions with other foods, I sought out more information on FPIES.  I read that there are two classifications - acute and chronic.  Acute reactions involve delayed onset vomiting and/or diarrhea after ingesting an allergen.  Chronic reactions can include sleeplessness, agitation, excessive gas, skin rashes, reflux, hiccups, and mucousy/bloody stools.  I almost started crying because Cecilia had every single chronic symptom.  I always thought her frequent hiccups were strange.  I even asked my friends how often their kids got hiccups, and they responded with very rarely.  Cecilia gets them nearly every day and sometimes twice a day.  I always thought it was reflux related.  Anyway, I sent her allergist an e-mail telling him what I had discovered and sharing a recent reaction to oats (much the same as the carrots), and he urged me to see a GI to make sure we weren't missing anything.  He said many times FPIES is quite mild and chronic.

When I called to schedule with the GI doctor I wanted, I was informed that the earliest available appointment was in September.  There were some cancellations blocked out, so I had to leave a message for the doctor's personal scheduler.  She called me back within two hours and said "How about July 5th at 10 am at the Glendale office?"  Um, yes please!  The Glendale office is less than 15 minutes from my house, so that made the deal even sweeter.  I had many people praying for an earlier appointment and am still so thankful we didn't have to wait around.

Dr. Schroeder with Phoenix Children's Hospital was amazing!  She was very personable and seemed genuinely interested in helping us.  She asked questions, took a thorough history, looked at rash pictures on my phone, checked her weight and height measurements I brought in, and allowed me to ask questions.  Dr. Schroeder even looked at poop pictures!  She was also happy that I brought in Cecilia's poop from earlier in the morning, which she tested for blood twice.  It was thankfully negative.  That coupled with Cecilia's clear skin makes me feel we are on the right track diet wise.

Dr. Schroeder thinks Cecilia has chronic FPIES but said she can't say for certain until we scope her and take biopsies, which will happen 6-8 weeks from now.  She wants to rule out Eosinophilic Colitis, another allergy disorder.  Because my nephew Blake was just diagnosed with Eosinophilic Esophagitis (EoE), that is considered having a family history.  The doctor also said that because she is reacting to so many foods, it makes her wonder if there is something other than FPIES going on, since kids are often starting to outgrow their FPIES triggers now rather than gaining more.  She also said that chronic inflammation could make it look like a food is a problem when really the gut just hasn't healed.

We left the appointment with samples of various toddler formulas/nutritional drinks.  We need to trial these to see if we can get Cecilia to drink one to fill in some nutritional gaps and to make sure she has a good supplement if I am unable to continue breastfeeding.  It is something I can use to replace breastmilk or add into her diet in addition to breastmilk.  (So far, she tried chocolate flavored Neocate Junior and was not a fan.  She took two sips, made a funny face, and said "right here" as she placed her cup on the counter.  I thought it wasn't bad.)  Dr. Schroeder said to let her know which Cecilia prefers, and she will write her a prescription for it.  I wanted to laugh because I already know my insurance won't cover it (right Jill?!).  I will probably give them a call to see though since the cost of the formulas are so high.  We are also getting her a hypoallergenic multivitamin and calcium/vitamin d supplement, and she needs to be on an antacid until her scopes.  Reflux can cause an increase in eosinophils in the esophagus making it look like a person has an eosinophilic disorder, and the doctor doesn't want the scope to be skewed.  I wonder if the antacid will make her hiccups stop.  We also can't introduce any new foods until after the scope results.  This means we continue to eat pork, chicken, turkey, beef, grapes, potatoes (in various forms), kale, raspberries, bananas, olives, and coconut products.  Hey, at least I am back to prepregnancy weight now!

The good news is that FPIES is often outgrown by age three.  The bad news is that the only way to figure out what the triggers are is to feed the foods to your child and wait for a reaction.  Dr. Schroeder advised us to avoid milk, soy, rice, and oats until at least age 3; they are the most common FPIES triggers, and I know rice and oats are two of Cecilia's worst triggers.  Other common triggers are poultry, sweet potatoes, peas, and beans.  I think poultry is fine for us, but pinto beans and peas definitely aren't safe.  The jury is out on sweet potatoes for us.

Rash from pinto beans.  It was also on her belly, back, and thighs.
I won't share the poop pictures with blood streaks.

I am so thankful for a knowledgeable allergist and gastroenterologist, especially after Cecilia's first pediatrician and first allergist brushed off my concerns.  Oh, you don't care that my child is gagging and choking on her vomit?  Oh, I shouldn't consider allergy testing until age two, and seeing a GI would be worthless since they would give me the same advice you just did?  Oh, I should be happy that my child doesn't have any life threatening allergies?  Suuuuuure.  Thanks for nothing.  I just wish I had kept a detailed food log much sooner, but it was so difficult.  I also didn't know what to look for; I was always looking for typical IgE mediated responses like hives.  I din't know to record when she got hiccups.  I didn't know to record specific times to check for delayed reactions.  I thought her full body rash many, many months ago was from rolling in the grass; I didn't know it was probably from eating a lot of a trigger food over a couple of days.  Now I know what to look for, and I am on a mission to help Cecilia be comfortable and happy and to outgrow her FPIES triggers through food avoidance.    
 

All About Cecilia: Part 3

My crazy girl

Cecilia has really been developing like crazy, so it was very easy for me to come up with 25 different things about her.  I started this post in April, but ran out of time to enter the last three facts.  One day I shall have more time for things like this.

51. When trying to turn pages in a book, you first lick your fingers just like you see Mommy do.

52. You say "Thank you" for everything.  If someone hands you something you asked for, "Thank you."  If Mommy gives you milky, "Thank you." If Mommy gives you the other "boo boo" when you want to switch sides, "Thank you."  It is super, duper cute!

53.  Unloading the dishwasher is something you do to help Mommy.  You hand her the items and started saying "Thank you" when you hand them to her because Mommy always thanks you for handing them to her.  Silly girl!

54.  April 11, 2016 was the first night in your big girl bed.  You have been doing great!  You climb in yourself sometimes and lay down on your pillow.  You now have quite the collection of stuffed dogs and cats who sleep with you!  At first, you woke up no more and no less than you had in your crib.

55.  Birds, or "cheep cheeps" as you call them, are a favorite of yours.  You get excited when you see one.  It helps that our block wall must house some yummy bugs because we get a lovely Gila woodpecker who visits often.  (That mother effer better not poke any holes in our stucco because we just had our house repaired and painted.)

56.  Every once in awhile you like to sit and do a wooden puzzle with Mommy.  You are getting better at it, but you lose interest very quickly.

57.  Twice now, you have fallen out of your booster seat at the table.  It's not totally your fault because you weren't buckled.  Well, the first time was your fault actually.  You climbed up all on your own and kept standing up.  Mommy told you to sit down, and when you wouldn't, she walked over to make you sit and buckle you.  You were being silly and trying to sit quickly when you saw Mommy coming, and you fell right over backwards hitting the kitchen floor.  You did it again when you were trying to see what Genevieve was doing instead of sitting properly and eating.  Now, Mommy has learned that you have to be buckled.

58.  On 4/16, you got your bedroom door open, but thankfully you haven't been able to do it since.

59.  One day Mommy caught you playing Barbies; you were making one say "EIEIO" and then the other would reply back with "EIEIO".  I guess you didn't have much conversational language at this point.  Now, you make them say "Hi", and you still enjoy making them kiss.

60. Speaking of EIEIO, you know a lot of words to a lot of different songs.  You sing them in the car and sing them to request a specific song.  You sing "Johny, Johny, Yes Papa", "Old MacDonald Had a Farm", "Baa Baa Black Sheep", "Twinkle, Twinkle, Little Star", and "The Finger Family Song". You also request "1,2, Buckle My Shoe" by saying "Shoe" and the Gummy Bear Song by saying "Bear".  There is a version of Baa, Baa Black Sheep in which a sheep passes gas at the end.  You now make a raspberry sound with your mouth while singing this song.

61.  Speaking of passing gas...when anyone does so, you now say "Toot".  Sometimes you laugh right after.  You used to say "poop", but have recently learned the difference.  

62.  When you don't like something, you say "Yucky."  Sometimes you make a funny face too.

63.  Mommy thinks it's hilarious when you try to bounce a basketball.  You basically just hit it while it is on the ground.

64.  We have a stuffed Santa Beanie Baby, and when you saw it awhile back, you said "Ha, Ha, Ha".  I have no idea how you knew to do that, and think your rendition of his belly laugh is so cute.

65.  5/7 and 5/8 you had your first stomach bug.  Mommy caught it first in the middle of the night.  By the following evening, you started throwing up.  The next day brought trouble from the other end.  You took like three naps that day; you even put yourself to bed once while Mommy was napping and Daddy was on duty.  Genevieve got it next but not until several days later, and luckily, it never got its claws into Daddy.

66.  5/9 you had a skin prick test done.  We met with a new allergist who was phenomenal.  Testing showed that you are definitely allergic to almonds and mustard, but based on your history, we shouldn't need to worry about them being life threatening. You had skin reactions to a lot of other foods, but the wheals (bumps) were tiny and the flares (redness surrounding the bump) were non-existent by their measurements.  Since I am going to do a separate post on this, I will just say that we have to avoid around 19 different foods.

67.  The week of 5/9, you said your first three word sentence.  You said, "Daddy help you" because, well, you needed help with something and Mommy told you to tell Daddy.  I'm glad you listened.

68.  If someone gets an owie or is crying, sometimes you come over and try to give them a kiss or hug.  Genevieve often wants some space or only wants Mommy at this time, but sometimes she allows you to comfort her, and it is the sweetest, most precious thing.  If you are the cause of her pain, she doesn't usually accept your hug or kiss as an apology.  We are working on this.

69.  The above was a nice segue for this next little tidbit.  The other night you were in Mommy and Daddy's room jumping off of a large, plastic tote.  Genevieve quickly hopped on and layed herself down on it so you could no longer get on.  You were so mad, so you said "Sister hit you."  Then you proceeded to whack her in the back with your fist, making her cry.

70.  This one is momentous.  On May 17, 2016, you slept through the night for the very first time!  For a little more than a week, Daddy has been sleeping on the guest bed in your room to allow Mommy a chance to get extra sleep.  At first it was hard for you to not have "milky" at night (and really hard for Mommy), but it started becoming easier and easier for Daddy to get you back to sleep with a drink of water and a back rub.  Once (or twice) he found you sleeping on the floor by the door.  Even one night when you woke several times, you put yourself back to sleep.  I am hopeful this will continue even when Daddy decides to vacate the guest room...(Update: As of 7/1, you have slept through the night approximately 2 or 3 more times.)

71.  You almost got us KICKED OUT of the library.  First you were running through the children's area yelling, clapping, and saying "Yay!"  Then, you kept taking books off of the shelf and throwing them inside of something in the kid's area.  I had you return a book to the shelf as I returned the rest, though you really didn't want to help.  You went back for more books, and that's when I put you in the Ergo carrier for a "time out".  Of course you fought and screamed, and that's when the security guard came over.  I think he heard me trying to quiet you down and realized I was not trying to snatch you away from your mother.  I calmed you down, and you wanted to go play with "Sister".  Genevieve was building with big, wooden blocks, and as you went to join her you tripped and fell smashing some blocks.  You screamed at the top of your lungs, and as I was explaining to Genevieve that we needed to leave because Sissy was having a bad day, the security guard again came over.  I am pretty sure he was about to ask us to leave, but we beat him to the punch.  After that, I bought me a venti chai cream frappucino from Starbucks, and Genevieve got a chocolate cake pop.

72. You ran down a Little Tykes slide in Meguire's backyard one day.  Mommy didn't witness it, but Meguire was freaked out and impressed at the same time.  There is no doubt that you are trouble!  The smirk you gave Meguire when she told you to sit down at the top of the slide the next time was proof of that.

73. Whenever you see a cake, especially the pretend one with a candle, you say "Happy".  Then you try to sing Happy Birthday.

74. You are an opportunist, just like your sister.  As soon as I leave the room in the morning to take a shower, I hear the kitchen chair scooting over the floor.  You can then be found getting into Mommy's purse or stealing the tablet or phone from the counter.  You are intrigued by anything on the super messy counter; it's like a treasure trove.

Cecilia stole Daddy's phone from the counter
and did this when she saw me coming for it!

75. For some reason, you are obsessed with the color yellow.  Whenever you hear someone talking about colors, you say "yellow".  When Genevieve asks you to say red, you say "yellow".  You point to a crayon and say "yellow".  One day, you actually did point to the yellow crayon.  Maybe you are starting to figure it out.