Saturday, June 11, 2016

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!