Monday, February 29, 2016

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.

Sunday, February 28, 2016

A Series of Unfortunate Events

It has been a difficult month.  The last several weeks have felt like labor pains . . . one thing right on top of the other with (seemingly) no respite in between.

About a month ago, Nate and I received the wonderful chance to get away for a weekend marriage conference with Paul David Tripp.  The content was rich, and the speaker was excellent.  We returned home so refreshed, and optimistic.  Then we fell back to earth with a thud as Nate came down with a stomach bug that night.

I began the usual task of running around disinfecting every surface I could think of, washing sheets, tending to my sick husband, and pleading with God to spare me from catching it.  Catching a stomach bug is worse than (in my humble opinion) going through labor and delivery!  Olivia was next in line, and thankfully, just had mild symptoms.  God in his kindness kept me healthy, and I breathed a sigh of relief when Monday rolled around and Nate seemed to be on the up and up.  He still wasn't back to being 100%, however, and his appetite didn't really show much improvement.  That Thursday, he was feeling well enough to attend school with Olivia, and really enjoyed the opportunity to participate with her there.  That afternoon, we came home and he suddenly didn't feel well again.

Nate went to bed around 1 pm, and slept until close to 10 pm without waking up once!  He was up for just a little while, and then went back to bed for the night.  Come to find out, there was a second bug going around our homeschool community group that knocked out so many families they ended up having to cancel the following week's meeting.  Yikes!  This time, the rest of our family didn't escape.  What started out presenting like a stomach bug (AGAIN) slowly morphed into feverish, body aches and cold symptoms.  It was a yucky business that picked us all off one by one, and took forever to get through!

By the Friday before Valentine's Day, I felt like climbing the walls.  I had not been out of the house much due to sickness, and Nate was still struggling with not feeling well.  I had been playing full-time nurse, and full time Mommy for nearly two weeks, and I was overwhelmed.  I was frustrated as God was revealing to me how willing I was to serve my family - as long as it didn't require too much sacrifice on my part.  I didn't like what I saw.  I had to keep preaching to myself, and praying that God would change my heart - even (especially?) in the midst of exhaustion.

Although Nate had been to the doctor, he was frustrated that he wasn't finding relief from the pesky symptoms.  I half jokingly said I'd be willing to drive the 3 1/2 hours to my parent's house just to get a hug from Mom.  My sweet, understanding husband said that if Mom didn't mind me showing up on her doorstep for the weekend, he was fine with that . . . so I loaded the kids into the van, and we "ran away from home" for the weekend!

It was really nice having a brief respite from the "sick house" for a couple of days.  I even got to enjoy a surprise coffee date sans kids with a dear, dear friend!  I was starting to feel like I got my feet back under me, and gearing up for going back home on Monday morning.  I was sitting with Mom and Dad after the kids had gone to bed Sunday evening (Valentine's Day), when Mom started getting text messages from people showing concern for my Grandpa.  Of course, we had no idea what was going on, so Mom called Grandpa's phone at 10:30 pm.  His fiancĂ© answered, and confirmed that he had been in an accident, and was airlifted to a hospital in Phoenix (she didn't know which one) with life threatening injuries.

Mom began the grueling process of calling around hospitals in Phoenix, praying the entire time, and not sure what kind of answer she would receive when she finally found Grandpa.  Needless to say, none of us went to bed for a long time that night, as plans were made so Mom could drop everything, fly out to Phoenix, and be with Grandpa.

The following Tuesday, I spent most of the day at the University Children's Hospital with my sweet Julia, trying to get to the bottom of why she was having so much trouble starting on solid foods.  We left that day with a diagnosis: FPIES (more on that later).

Thursday was another homeschool community group day, and then that afternoon when I got home, I discovered that our dishwasher had finally conked out for good.

And most of you know that this past Monday, Grandpa passed away as a result of his injuries.

Of course my sweet husband continues to bear the weight of job searching, and hasn't had any real leads yet . . . he is still working with his doctor to get to the bottom of what is causing his on again/off again symptoms that just generally make him feel yucky, and God is teaching him through all of it as well!

It's been a tough few weeks.  And God is faithful.  I am not the same person I was three weeks ago.  He is continuing to refine me and make me more like Christ, and for that I am thankful!

In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.
 1 Peter 1:6-7

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.  2 Corinthians 4:16-18 (emphasis mine)

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.  Philippians 1:6

We have seen God at work in countless ways throughout the past weeks.  As John Piper said, "God is always doing 1,000,000 things in your life, and you may be aware of 3 of them."  We have felt the prayers of our brothers and sisters, and their kindness toward my family, and especially my Mom in her time of grief.  I am thankful.  Nothing brings me greater joy when in the midst of a bad day, than to make Jesus' Name look great.  May God because of his grace, enable me to do that!

Grace and Peace,