Allergy Testing

After Grayson's endoscopies two weeks ago, his biopsies came back positive for eosinophils, indicating an allergic reaction in the esophagus and leading to a diagnosis of Eosinophilic Esophagitis.  He was negative for lactose intolerance and Celiac Disease so we were referred to Dr. Rose at the Arizona Allergy and Asthma Institute for further allergy testing.  Grayson was also immediately started on a Flovent steroid inhaler that he is to swallow (instead of inhale) to reduce inflammation, in addition to Prevacid which we started up again for his acid reflux following the endoscopies.

On Monday Grayson and I visited the AAAI and after a consult, underwent a standard prick test on his back for 27 potential allergens.  He was found to be immediately allergic to peaches and shell-fish but neither of those were particularly helpful finds since he doesn't eat either regularly and they can't account for his significant amounts of inflammation and erosion.

The Prick Test.

Of course that meant not one, but three more visits to their office this week to do something called a patch test.  The patch test checks for latent reactions to allergens and we honed in on some of the more likely culprits for this test.  A patch is fitted with numerous tiny pouches of pureed food or liquids and affixed to the patients back for 48 hours, putting those substances in direct contact with the skin.  Once the patch is removed, they wait 15 minutes and take the first reading to record the skin's reaction to the substances after the first 48 hours.

The Patch Test.

I was praying that this test would be successful and offer us some answers but I wasn't quite prepared for this level of 'success'.  At the first reading on Thursday, Grayson showed irritation for 6-7 new allergens.  Cue punch in the gut.

Grayson's back after the first 48 hour check.

After a sleepless, itchy night, on Friday we went in for the 72 hour check and the final read.  The results indicated allergies to corn (the strongest reaction), soy, wheat and avocado, and then 'irritation' to milk, oats and turkey.  I was shocked to find out he was allergic and/or sensitive to so many foods and honestly felt overwhelmed and helpless.  My biggest concern was not only the task of filling his nutritional needs with foods he could eat but fear that he might be allergic to even more things that we didn't even test for.

Top left circle is the reaction to corn after 72 hours.

Our appointment with the doctor to go over his results isn't until next Wednesday so in the meantime we've switched him from soy formula to almond milk (thankfully this transition has been smooth in the last 24 hours), and I scoured the gluten free selections at the grocery store to give him a few options until we know which of these allergens we need to avoid permanently.  We know strawberries, blueberries, applesauce and grapes are safe so they will be completing his diet for the next few days.  I am hopeful that we won't need to avoid all of these foods long-term or do further testing but there is that possibility.

I know that I am not the first mom to go through this and I also know that there are much worse things to face with your children.  However, anxiety and worry still grip my heart and my desires for complete health and comfort for my baby come with the territory.  In the light of the morning I am feeling more at peace but there is still an unshakeable uneasiness with the lack of certainty about every food that is causing irritation.  I find myself wanting to woo control into my keeping but alas, it is not mine.  I have been comforted in knowing that our God knows this little boy's body and I can trust him to provide wisdom and healing.

For I am the Lord your God

who takes hold of your right hand

and says to you, Do not fear;

I will help you.

Isaiah 41:13

Grayson: 15 Months

This month has been defined by procedures and testing, aimed at getting this boy healthy.  I've decided to do a separate post about that and keep this one focused on all this boys other adorable and applaudable details.

At 15 months, Grayson:

• Weighs 22 1/2 lbs and has graduated from the 10th percentile back up to the 25th for both weight and height.  Following month after month of dropping in the percentiles (down from the 50th at birth) it is such a joy to see this boy growing at a healthy rate!
• Wearing size 12 months clothes (though we'll be going up a size soon) and size 4 diapers.
• Is not yet walking but has taken a few steps on his own and wants nothing more than to hold someone's hand so he can zoom around on foot.
• Has 7 teeth and abhors the mere indication of brushing any of them.
• Has added three more words/phrases to his vocabulary, "uh oh", "all done" and "bib".
• Is... and let's take a moment to celebrate this... sleeping UNSWADDLED 100% of the time.  Finally.
• Loves to hug, kiss and cuddle and is still easily the sweetest kid alive.
• Is having an absolute daddy love affair and goes tromping into our room at the first sound of daddy's alarm in the morning, ready to climb and give kisses.
• Has figured out how to climb onto the couch by himself and thankfully how to get off feet-first.  This was essential seeing as how his next move upon gaining this ability was to tumble over the side of the arm in acrobatic style just like his sister.  We keep a pile of pillows on both sides at all times for this very purpose of course.
• Loves to chase, is more into books but rarely lets me actually read one to him, loves to eat (the few things he can actual tolerate at this point), has mastered the snack cup, can do a straw cup but doesn't prefer it in the least, loves his sister, is amazing at keeping himself occupied for long periods of time and would always always prefer to be outside.
• Has not only had a growth spurt of the physical sense but has made a leap in his communication skills, humor and overall person-ness.  He is just on the brink of transition between baby and toddler and despite feeling joy in his every move, I find myself already mourning the coming loss of this baby who has won over my heart!

Endoscopy

Monday morning, before the birds were singing and the sun was up, Blair and I awoke and readied ourselves for a long morning.  At 5:15am we went together into Grayson's room to rouse the sleeping boy and to our surprise he opened his eyes in the darkness, let out a quiet squeal of joy to see us and wrapped his arms around my neck.  Pure sweetness, this boy.

Little did he know the day wasn't going to be ideal and would hold within it a vague memory of being gassed to sleep, scoped through and through, and waking disoriented, tired and starving.

Except for a little fussing as we put him in the carseat, Grayson remained as happy as can be through the whole morning.  He hadn't eaten since 6:45pm the night before and even on a little fasting belly this kid's light could not be dimmed.  We drove the 45 minutes into the city to Phoenix Children's Hospital and checked in for his Upper Endoscopy and Sigmoidoscopy (lower bowel).

Sleepy boy, laughing with Daddy while we waited to check-in.

Every time I've visited this place I've been blown away by their attention to detail, their kindness, and overabundance of kid-friendliness.  What a blessing to be near such a great children's hospital!  After check-in we were ushered to the procedure waiting area and then into our own waiting room.  Vitals and weight were taken (he was 20 pounds 10 ounces I believe, almost a full 4 pounds lighter than Ava at this age), we changed him into his purple hospital gown, and played in the play area until it was our turn to see the anesthesiologist.  While we were playing, we were visited by both the doctor who would be performing the procedure and the anesthesiologist to see if we had any questions for them.  Again, so impressed with their effort to make us feel comfortable and at ease before such an anxiety-provoking procedure!

Waiting for our turn, sweet as can be.

When it was "time", I of course was holding steady on the outside while dreading every step on the inside.  It was a quick process, laying him down on the procedure table and holding his arms while the anesthesiologist put a mask over his screaming face.  It took under a minute for his screams to quiet and his watery eyes to close, but it was such an unnatural thing to experience and so hard for this mom and dad to watch.  I gave his limp body a long kiss (until they warned me not to take a breath next to the gas mask that had just put my son to sleep) and Blair and I strolled our belongings to the waiting area.  The procedure would only take about thirty minutes and I'm thankful for that.  We were so exhausted at that point but couldn't rest, and instead spent the time looking at pictures of our sweet children and reminiscing about our first 'dates' as a couple, 14 years ago.  Back then we were engulfed in awkward dance photo-opp's and how and when to hold hands in public, with no idea the future that would unfold!

The doctor came out right on schedule and was very informative and thorough in sharing his findings with us.  This first picture was taken of his esophagus, at the top of his throat, looking perfect, healthy and as it should.

This next photo is of his lower esophagus, right above his stomach.  It shows what he called Severe Erosive Esophagitis--swollen, congested tissue with multiple linear furrowing (the raw-looking red lines going down) suggestive of Eosinophilic esophagitis (Esophagitis in response to an allergy).

Multiple biopsies were taken of the tissue and will be able to tell us whether this condition is caused by persistent gastroesophageal reflux disease (acid reflux), or some type of food or environmental allergy, lactose intolerance or Celiac disease.  He is to begin Prevacid again immediately, and depending on the results of the biopsies may need further allergy testing.

I look at those pictures and 1) wonder how this boy manages to still be the happiest kid on the planet, and 2) am no longer surprised that he has had so much trouble swallowing food and am instead surprised that he has learned to swallow anything!  This condition can also explain his Dysphasia (aspiration of liquids) so we're very optimistic that once we get him treated he will be able to swallow thin liquids again, drink from a sippy cup, and so forth.

Recovery was by far the most difficult part of the day for Grayson.  He had a harder than average time coming out of the anesthesia, was very disoriented and incredibly frustrated by attempts to feed him clear liquids instead of formula (the nurses prefer this in order to make sure patients are swallowing correctly).  He was also doing a lot of abnormal coughing and gagging which concerned the nurses but thankfully once we got him settled and fed and removed from the recovery room, the coughing subsided and he had no further complications.

Drinking a bottle in recovery.

An out-of-it little dude, resting the full weight of his head

on my cheek as we made our way to the car.

Thankfully once we left the hospital, Grayson was exhausted but otherwise his normal, calm, and relaxed self.  He fell asleep on the ride home and by the afternoon was eating, tumbling and laughing as usual.  The resilience of kids is ah-mazing.

Wiped out on the car ride home.

Though the day was exhausting and the news not-so-great, it is overwhelming a relief to have a grasp on what is going on inside this sweet little body and a plan to get him healthy, growing, and pain-free.  In 1-2 weeks we will have all of the biopsies back and we'll be able to move forward with treatment once we know exactly what we are dealing with.  In the meantime, this house is full of excessive amounts of snuggling for this boy who my heart adores!