Peaches & FPIES: Progress!

I've been meaning to write an update for a long while now - it's been nearly six months since Julia's diagnosis of FPIES.  Honestly, things have been going so exceptionally well, that I was beginning to feel like it might just be a bad dream!

We've introduced food gradually - usually one food item per 10 days, and Julia can eat many of the same foods we do.  Which is a tremendous relief to me!  We have gone easy on introducing her to grains, but she can eat beef, pork, and chicken, as well as many fruits and veggies!  A huge victory for us was that she doesn't seem to have a problem with dairy - she loves Kefir, and Greek yogurt!  Then we gave her cheese, and that might be her favorite thing to eat right now.  :)  We've been going to see the Pediatric specialist at the University Children's Hospital every six-ish weeks for updates, and she is very pleased with Julia's progress.  She is growing!

Eating "modified" taco salad!

After her appointment the end of April, things had been going so well, I decided to be a little adventurous.  The older kids were eating PB&J for lunch, so I gave Julia a tiny bite of their sandwich.  A few minutes later she began to cry, and I thought, "Oh no!  Here we go again!"  This time, however, her reaction was quite different.  She must have gotten some peanut butter on her hand and then rubbed her eye - she had this angry red swollen rash on her face.  She kept crying harder, and then about 45 minutes later, began throwing up everywhere.

Initially I was alarmed - she has never had a rash like that before!  However, after about an hour, it had started to subside.  She got a bath to clean her up, and then, similar to an FPIES reaction, she was lethargic and clingy.  I rocked her for a while, and then she took a long nap.  When she got up, the rash on her face had disappeared, so I was confident that she had recovered.  I watched her the rest of the night just to be safe!  We kept the peanut butter FAR away after that!!  Talk about Mommy guilt!  :-/

Just before her nap - her rash was almost gone.

We just had another follow up with the specialist this past week, and because of the way Julia reacted to the peanut butter, the Dr. felt that we should come back to follow up with an allergist to do skin patch testing for a peanut allergy (this would be an Immunoglobulin E [IgE] reaction, which is a hyperactive immune system reaction, vs. an FPIES reaction, which is caused by cell mediated reactions).

After meeting with the GI specialist, we were scheduled to meet with a Pediatric Nutritionist.  It was very encouraging to hear that many of the foods she was recommending lined up with what we had been introducing to Julia.  She gave us several recommendations for the future - (for instance, egg substitutes to possibly use in baked goods after we've introduced wheat, etc.), as well as some recipes!

While we were in the room with the nutritionist, the nurse came in and asked "what's your day look like today?" and said it would be a long shot, but there was a possibility we could get in with the allergist that day instead of coming back.  Miraculously, it worked!  We had about a half hour window to explore the skyway of the hospital, and let Julia get down and walk a little bit.  Having already been at the hospital for almost 2 1/2 hours by this point, she was grateful to get down and move!  Also, the poor girl was missing her morning nap.  There is lots of construction going on down there, and the skyway provided the perfect view to watch the tractors and workers busy with their work.  Julia attracted lots of attention, and she was hamming it up quite a bit!  I was amused.  She is not my shy child!  :)

The office had given us a buzzer similar to the ones you get at restaurants, so that we would be alerted when the allergist was ready to see us.  When it lit up and started buzzing, Julia was delighted!  She was not pleased that she had to give it back to the nurse's station.  ;)

By this point, I was really struggling to keep my overtired girl happy and quiet enough to talk with the Dr.  She was very understanding, and actually left the room and came back with some toys!  One of the advantages of having these appointments at the Children's hospital are that they are tremendous at catering to little ones.  When it came time for the patch test, they brought in a person called a "Child Life Specialist" whose main job was acting goofy, and keeping Julia distracted.  She brought bubbles, and more toys.  I was impressed!

At this point, Julia was so tired, and sick of getting poked and prodded, that keeping her still for the patch testing was no easy task (who wants to get what feels like a whole bunch of mosquito bites on their back, and then not be able to touch or scratch them?).  Then we had to wait 15 minutes for the reactions to show up, before they came back in to measure the size of each mark.  Poor girl was such a trooper.

Waiting for the patch test to complete  

At least because she was so tired, she was wanting to snuggle in Mommy's lap anyway.  I sang softly to her, and just kept talking about the surroundings, trying to keep her awake and distracted.  The test showed that she does, in fact, have a peanut allergy.  Thankfully, it looks like it's just peanuts, and not tree nuts, but we're avoiding all nuts just to be safe.  The Dr. ordered blood work so that we can monitor her allergy yearly, as sometimes kids can outgrow it!  Also, we had to re-test her hemoglobin and iron levels.  Thankfully, they had lidocaine cream that they could put on her arms beforehand to numb them, so that would hopefully make getting blood drawn less painful.

While we were waiting for the lidocaine cream to take effect (it takes half an hour) they had a clinical pharmacist come in to explain how to use an epic-pen, should the need ever arise.  They also had a "trainer" pen there, so that I could practice with it and hold it, see how to remove the packaging, etc.  Then on to the last stop, the lab.

Again, being at the Children's hospital made the lab look less scary, with ceiling tiles that looked like aquariums or clouds, wind chimes hanging from the ceiling, and a TV playing Frozen (joy!), but it was a traumatic process nonetheless.  By then, Julia started to cry if anyone came within 10 feet of her with a stethoscope.  I was grateful to at least be able to hold her throughout the blood draw, and they tried to pacify her by giving her sugar water, and also this handheld bumblebee therapy toy that vibrated,  when she held that in her other hand, it seemed to soothe her.  That last hurdle was almost more than my Mama heart could handle!  I was sitting in the chair crying right along with her!

Are we done yet, Mama?

By the time we got done, we had been at the hospital for six hours.  It was a very long day.  Because I had not originally anticipated meeting with the allergist Dr that day, I had not planned on bringing lunch or anything - thankfully I always keep a few safe snacks in the diaper bag for Julia, and she is still nursing, so she wasn't too hungry.  She was asleep before we even left the parking garage, and then proceeded to take a four hour nap!  By the time she woke up, she was her happy, perky, Peaches again.  It's amazing how resilient children are!

I feel very fortunate to have access to such a great care team, and that they are so close to home.  While I understand that for a lot of kids, these allergies can be life threatening, and the Doctors need to prepare you for that possibility, every kid's tolerance levels are different, too.  By God's grace, it seems to us that Julia's allergies have been very manageable, and easy to accommodate.  We have never felt her life to be in danger!  The doctors continue to be thrilled with how well Julia is growing and thriving, and we know it's because of all the prayers that have been lifted up on her behalf.  Thanks be to God!

A Year of Peaches

I can't even believe that my baby is one year old today!  How time flies . . .





Look at how much she had filled out by two months!  She was our little chubba wubba.  <3



And this is about the time I started calling her "peaches".  Look at that adorable fuzz!

That round little face melts my heart!

I remember this day . . . she would NOT smile for me - no matter how crazy I acted!  haha!

Another serious picture.  I must look weird with a giant black thing in front of my nose.  ;)

This girl NEVER holds still anymore!  I had to call in reinforcements - and then she wanted to go chat with my assistant.  ;)

She also kept wanting to walk over to where her favorite toy was.  :)

She is the sweetest little ray of sunshine for our family.  We just adore her, and are so grateful to God that he chose to gift us with her life!  What a treasure to be tasked with the privilege of raising her up in the Lord!

Happy FIRST Birthday, my sweet little Peaches!

Julia Elise and FPIES

All of my kids have had interesting food "journeys" in their short little lives.  Olivia had infant reflux as a tiny baby.  She refused to nurse at first, and would scream for hours without being consoled.  She had slow weight gain, and finally was diagnosed with reflux when she was about eight weeks old.  After making significant changes to my diet, we were able to make things manageable for her, and finally got her to nurse well at around three months old.

When Levi was born, we were all delighted and relieved that he nursed well from the very beginning!  However, at around three weeks old, he too started showing signs of excessive fussiness/colicky behavior.  After consulting with the Pediatrician, we narrowed it down to a dairy sensitivity (thankfully not a dairy allergy, which is more serious).  Most babies have trouble breaking down the caseins (proteins) in dairy products, not necessarily the lactose (which is considered a lactose intolerance).  After eliminating dairy from my diet (going without cheese and butter . . . so hard!), I had a different baby!  He was happy and content most of the time, and I was happy to go without dairy for a short time for his comfort.  Thankfully, today he enjoys dairy products with no issues!  :)

Both of my older kiddos were completely uninterested in starting solid foods until they were about 9 months old, and could basically feed themselves.  When I excitedly offered them purees at 6 months, they both looked at me like I was trying to poison them.  While I really wasn't in a hurry to start them on solid foods, I would still daydream about the prospect of making all the different baby foods from scratch, freezing them in cute little batches, and feeding them to my babies who would dribble more down their chins than ingest.  Alas, it was not to be! 

Enter the third child!  Julia was by far my easiest baby in terms of nursing.  I really didn't have to have any dietary restrictions with her at all (beyond the obvious things), and she has been a happy, easy going baby who has made having babies look easy (okay, well, almost.  ;).  Just like with the other two, I offered her pureed avocado at around six months.  I thought, "this is it!  She'll be the one to enjoy baby food!"  She timidly gave it a taste at least, complete with adorable scowls and sour faces.  A few hours later, she became super fussy and clingy. Then she started spitting up quite a bit.  She had always been a spitter, so I really didn't think anything of it, and put her to bed - attributing the fussiness to teething or some other typical "baby" ailment.  About an hour after I put her to bed, I heard her wake up crying, and went in to check on her.  She was still sleeping, but had spit up again, and crawled out of the puddle in her crib mattress.  :(  I had to take her out, change her pajamas and crib sheets, and put her back to bed.  I really wasn't sure what to think!  Maybe, I thought, like the other kids, she just won't quite be "ready" until she's a little older.  So I waited a few months.  No hurry, I thought.

This time, we offered her banana.  She eagerly took it off the spoon, and was happy to have more!  I was so excited at how well she was doing, and cooed over how cute she was.  I was still a little gun shy after the avocado episode, however, so I kept her "meal" to just a few tablespoons.  Sure enough, a few hours later, the same scenario unfolded.  This time, my "mommy radar" was going off, and since Julia had her 9 month appointment a few days later, I discussed it with my Pediatrician.  She assured me that nutritionally, it wasn't essential for Julia to be on solids until around her first birthday, so not to worry.  She was thinking it was probably something that would require working with an occupational therapist (for trouble swallowing, texture/sensory processing disorder, etc) for a bit, and that it didn't sound too unusual.  She said that if Julia still wasn't eating anything well by 12 months, we would have a therapist watch her eat to try to narrow it down.  "Just wait a few more weeks, and try again."  

So we did!  Julia had gotten to the point that when she saw us sitting down at the table, she knew it meant food, and she would crawl over to me and want to be held out of curiosity.  Sometimes I would offer her a taste of what I was eating if it was "baby friendly", but most of the time she wouldn't eat it - she just wanted to see what we were doing!  This particular morning, I had made oatmeal for breakfast, and offered her a taste.  It was the tiniest bite!  But she of course, loved it.  Satisfied with her taste, she got back down and was playing happily.  About 3 hours later, during her morning nap, she began crying.  I went up to see what was wrong, and there was vomit. everywhere.

As Nate was home, I called for him to come up and help so that I could put Julia into the tub, and start changing her sheets.  My poor baby kept throwing up in the tub, to the point that I started to get concerned.  I scooped her out into a towel, and held her as she started vomiting stomach bile, and then her little body tensed as she started to dry heave.  She was lethargic and clingy the rest of the day.  Definitely not normal.  

I called my Pediatrician again, and she agreed that it wasn't normal, and referred us to a Pediatric GI Specialist at the University Children's Hospital.  Praise God that we live in such close proximity to some of the best health care in the state!!

We spent several hours with this specialist, and after doing some blood work, and talking over Julia's symptoms, she gave her the diagnosis of FPIES.  Food Protein Induced Enterocolitis Syndrome.  If you want the really detailed version of this disorder, click here.

Basically, it means kids with FPIES are allergic to, well, food!  Unlike other food allergies that can be tested for with skin "patch" testing, or treated with an epi-pen, FPIES only affects the gastrointestinal system.  Furthermore, any food can cause a reaction - even foods that wouldn't typically be considered "allergen" foods (I'm looking at you, oats!).  There are some common "trigger" foods, but no two kids are the same when it comes to what can cause a reaction.  Even in trace amounts, if the child ingests an offending food, it can cause a reaction.  However, FPIES reactions don't usually occur from breastmilk, which explains why we never noticed the symptoms until starting Julia on solids.

Because the symptoms agitate the GI system so severely, it can cause extreme dehydration, and cause the patient to actually go into shock, which is a life threatening condition (about 20% of the time in reactions).  Thankfully, by the grace of God, we never experienced anything so severe!  Unfortunately, we have no way of knowing what will become a "trigger" food for Julia until she's had a reaction.  The good news is (I am always so thankful for good news!), most children outgrow FPIES by about age three.  We just have to hang in there for a few years (Lord willing!).

You can imagine my blank stare as the doctor was explaining all of this to me - I mean, what do we feed her?!?  Also, because FPIES is such a rare disorder, there is very little information out there on how to live with it as opposed to say, Autism, or a peanut allergy.  After I stopped reeling from all the implications (no cake for her first birthday, watching her like a hawk to avoid a reaction from food dropped on the floor, etc), I am optimistic about going forward.  If anything, I am relieved that we found an answer to her symptoms so quickly, and without any serious episodes!  God has been merciful to us.

For now, we are just taking it very slowly.  Any new food must be introduced a week or two at a time, as reactions are typically delayed, not instant (again, unlike a typical "food allergy").  It also should be single ingredient type courses, as it will make it too difficult otherwise to pinpoint what cause a reaction.  We are praying for her safety and well being, and thankful that she is a happy, healthy girl who has continued to grow and thrive!  

Without writing a novel, that's FPIES in a nutshell.  I still have much to learn, but I wouldn't hesitate to answer any questions I can!  We would covet your prayers for Julia, and for us as we seek wisdom in how to care for her best, and that she will continue to be spared from any serious reactions.

We are super excited to celebrate her FIRST birthday in just a couple of weeks now, and enjoying her first steps, first words, and generally pretty much everything about her!  She is a sweet, vivacious girl and we are incredibly blessed to be her parents.