Luke’s Health Journey

This is a long overdue post.  But I thought it was a good time since most of the tests started around Christmas time.  So here we go.  Right after Luke’s ear tube surgery he started having diarrhea.  At about day 7, I took him to the doctor where they suggested that we do stool tests for infectious bacterias.  The results were back in a few days and they all came back negative.  But the diarrhea was still going on.  So they suggested I make an appointment with a Pediatric GI doctor.  So I called to make an appointment and they didn’t have anything available until mid-February.  Kind of discouraging.  I decided then that I might as well try cutting dairy out of his diet to see if all of his throwing up/weight loss were due to that.  So we started that journey around Christmas time.  And by January we were seeing real improvements!  I was so happy.  The throwing up had almost stopped.  I was considering cancelling his GI appointment since he had gone a little over 2 weeks without throwing up.  I thought I had solved it!  But then the throwing up started again and within a few days, the GI doctor called to say they had an opening the next day because of a cancellation.  So I went ahead and scheduled it, not thinking much about it.  At that first appointment, Dr. Sutton seemed calm.  He seemed to think it might just be that his esophagus needed stretching.  But he was concerned with his weight since he had fallen off the charts at that point.  So he ordered a slew of blood tests to be done, an upper GI X-ray and an endoscopy.  So we did the blood work first which was torture because they could not get enough blood with the first poke so they had to move to the other arm.  The upper GI X-ray went just fine. He guzzled the barium drink and the doctor who was doing the procedure said he didn’t see anything abnormal.  I was starting to think we were doing all of this for nothing.  Then a few days later, I called the lab to see what his blood results showed.  And there were so many things that were in the abnormal range.  My heart sank.  When she mentioned all the foods that tested high on his allergy test, I lost it.  It was so overwhelming to think about.  I tried to calm my fears and step up to the challenge, also realizing that this was just the lab telling me what was out of range and that it hadn’t been interpreted by a doctor yet.  But I decided based on the numbers that maybe I should start moving toward a gluten free diet as well.  So I took small steps to do that.  A few days before Luke’s scheduled endoscopy the GI doctor called and said that he would also like to do a colonscopy since Luke’s eosinophils were high.  That was another let down.  I just couldn’t imagine prepping a 1-year-old for a colonoscopy.  But true to form, Luke handled a day of no food just fine.  It was not too bad.

Colonoscopy prep day!  Living on AJ and jello.

On January 29th, Luke had his first set of scopes.  I was so nervous.  I did not know what to expect at all.  When the doctor came back, I saw the pictures in his hand and I already knew they were not normal.  His stomach was full of ulcers.  Dr. Sutton said that he had never seen anything like that in a child that young.  It broke my heart.  The good news was that they were all healing.  None of them were open and bleeding.  He said that everything else looked healthy and normal.  We were thankful for that.  Dr. Sutton also said that his celiac panel was negative so we were thankful that he didn’t have Celiac’s disease.  But he did mention that there were other allergy diseases that are often more difficult to manage than Celiac’s.  So we’d have to see what the biopsies showed.  Our follow up was scheduled for 2 weeks later.

Pre and post op pictures.  He came back from the procedure and he was just sucking on that popscicle all by himself.  I thought it was so cute.  The picture of his insides shows all of his stomach ulcers.

On February 11 we met with Dr. Sutton.  He was so happy to see that Luke had gained about 1 1/2 pounds since our first visit.  I was thrilled when he said that he his eosinophil count was not high enough to diagnose him with any disease or disorder.  His stomach ulcers did not have any H. pylori bacteria so they were likely due to allergies.  So he said our course of action was to go dairy and gluten free, start prevacid too see if the higher than normal eosinophil count in his esophagus was related to GERD and then to meet with the allergist.  He scheduled a follow-up endoscopy for April 2nd so we could make sure the ulcers were gone.  Dr. Abbott, the allergist had an opening the next day.  So Luke and I met with him.  That appointment was a tad confusing.  I felt like we were going in circles with no definite recommendations or decisions.  We did a skin allergy test.  We tested for 26 things.  Of those 26, only 5 came up positive.  Wheat, Oat, Egg White, Peanut, Pea.  Some of the things that were high on the blood allergy test, didn’t show up on the skin allergy test.  He recommended that we eliminate the 5 things that came positive and to stay dairy free.  So that was the plan.

Look at the peanut reaction on #6.  Yikes!

Over the next 2 months Luke went on a 35 day streak with no throwing up!  We were overjoyed.  We had a weight check on March 11th and he was up to 20 lbs 13 oz.  Dr. Sutton was so pleased.  I thought we were out of the woods and that he just had some allergies that hopefully he would grow out of someday.  I went to the his endoscopy on April 2nd thinking that all would be well.  When the doctor came back, he said his stomach was 100% healed.  But he did see some thickening in his esophagus so we would wait to see what the biopsies showed once again.  So we waited.

Pre and post op once again.  Popsicles are the cure all!  And pictures of a healed tummy!  Hooray.

Luke ended up getting a stomach bug (that passed through our whole family…yuck) and had diarrhea to follow for about a week.  It really brought back bad memories and made me so sad for him.  But he did learn how to say “Poo Poo..Gross!” which we all thought was cute and funny.  On April 15th, we had his follow-up appointment and Dr. Sutton confirmed that biopsies did show that he has EoE (Eosinophilic Esophagitis).  It is a chronic disorder that he will struggle with his whole life.  Essentially these eosinophil cells (an allergy white blood cell) build up in his esophagus causing inflammation and strictures.  He gave us a few options.  1. Do nothing since he is doing better…gaining weight, throwing up way less frequently, etc. 2. Eliminate all grains, dairy, nuts, fish and reintroduce them one at a time followed by and endoscopy each time to see if those are EoE trigger foods for him or not (because everyone is different).  3. Start an oral steroid (budesinide) that acts as a coating agent along the esophagus to see if we can get the eosinophil level down.  As of right now, we have opted to do nothing since he seems to be doing better.

Life is hard sometimes.  I remember when Sophie was little I was talking to another mom who’s kid had a milk allergy and I remember thinking at the time that it would be the hardest thing ever to have a child with an allergy to food.  Now I would give anything if it was just one food we had to eliminate.  But we have been strengthened through the experience and have felt God’s reassurances in our life that despite challenges, all will be well.  We have a quote in our house from Elder Ballard that says “Remove any of your fear with faith.  Trust in the power of God to guide you.”  This quote has brought me comfort as I’ve realized that I can’t be afraid and that I am capable to go on this journey with my little guy who really is a remarkable little boy.  Despite all of his hardships, he is the happiest, sweetest and smartest boy around.  I love him.

 

4 Replies to “Luke’s Health Journey”

  1. Amy!! This makes my heart hurt, I can’t imagine the stress & worry you guys have been dealing with. What a sweet boy through all of this! We’ll keep you guys in our prayers!

  2. The poor fella! It is amazing how well he has tolerated it all. What a trooper and a fighter! The pictures of him with the popsicles are so cute. Hopefully his health just continues to go up from here.

  3. Oh Lukester! What a long hard battle this journey has been, but I am so happy he is doing well and gaining weight and not throwing up anymore! Hopefully, he will out-grow these allergies and not be so limited with his eats. He is a sweet boy!

  4. Oh Amy! What a trial! You are a champ for surviving through it! And Luke too!!!! So glad that there are answers and solutions, because sometimes there aren’t.

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