Now he's 6 feet tall....

I wanted to mention that our son Nick was all of 37 pounds when the top group of pediatricians were telling us he was making up this pain and suffering for attention.  All of them ignoring the fact that he should have been much heavier than he was!  He was so skinny, short and very pasty looking, with dark circles.  Really?  Faking it?

Anyhow, he is now 6 feet tall.   Looking back,  my husband and I argued about allowing him to eat anything he wanted.  My husband would tell me he should not be eating a snickers bar or a burger.  I was so happy he wanted to eat, I did not care what it was he was eating.  He had been deprived of eating for so many years.  I was sure to fatten him up.    Well, the fattening up did not happen, Nick is probably 124 pounds now.  But he is so much taller than he was supposed to be, based on height and my husbands.  He is, by far, the tallest person so far in our families.

Years of trying to get to the bottom of EE & now another disease....

It all began years ago when our son was around the 2nd grade.  He was small, skinny and could not eat much without having stomach pains.

This went on for a long time.  Back and forth to the pediatrician.  We knew something was wrong long before this started.  I was not sure what was wrong, but I knew something was amiss, so did my husband.   This was our 3rd child, and we had enough experience to know.

This brings us to 3rd grade.  Our son was unable to eat, and when he did he'd suffer.  Up every night with stomach pain, screaming and crying.   I would call the pediatrician and we'd go into see him only to be told that he was sure our son was "Faking the pain to get attention, and the pain was all in his head."

4th grade came, and I had enough.   I went out on my own and took him to see a pediatric gastroenterologist.  She ordered him to have an upper endoscopy.  The results showed a lot of things that were wrong, and turned out our son was literally, starving to death.  He had GERD, and an alarming number of eosinophils from the biopsy of his esophagus, along with a hiatal hernia and an elongated pylorus.

So for years he was treated with prescription drugs to treat GERD.  It did help a bit, but did not get rid of all of his symptoms.  He would have bouts of diarrhea, and this went on for years.

This takes us to 9th grade.  We changed to an adult gastro doc.  By this time EE had finally been identified and our son was positively diagnosed.

9th grade year starts, he was in sports, and all of a sudden, whammy.  No more sports, he started having terrible joint pain.  MRI shows that he possibly has ankylosing spondylitis.  We wait, and wait.  Thinking that maybe, this joint pain will somehow disappear.

Grade 11.  No answers for EE after going to San Diego's Childrens Hospital EE clinic.  No relief.   Off to Childrens Hospital LA, we see head of rheumatology, who works with the gastro doc @ Childrens LA.   Son starts Enbrel, and doc thinks it will push him into remission.  We are told that many boys have the same types of symptoms, and they believe these two diseases go together.   We wait and wait for something good to happen.

Grade 12.  No relief.  No change.  Senior year, and my son is still suffering.  No relief.  We go back to see the head doc @ Childrens LA, and ask about his esophagus, as we believe this will prove if the Enbrel shots have worked to put him into remission.

Referral to Cedars Sinai by Childrens LA.   See a new set of doctors in the Childrens inflammatory bowel dept.  Upper endoscopy and his first colonoscopy done.   Results show his EE has not changed, still the same.  Enbrel stopped.

Son graduates.  We return to have the last test done to rule in or out, the beast, Crohns.  This test was done 2 weeks ago  today.  My son has postponed college because of these diseases and the ongoing pain he has.   We are waiting for results, and in the mean time, we have no idea what we will do next.

A few notes.  While seeing the docs at Childrens San Diego, they wanted me to go on the elimination diet.  I refused as puberty was just hitting.  Our son was so tiny, and skinny.  We were worried he would not grow.  They did eventually tell us to give him what he wants to eat.  So I agreed, and I allowed our son to eat, literally almost anything and everything he wanted to eat.   Surprised us all, he grew very tall, taller than he was expected to grow.  I often wonder if I would have gone along with their advice and not voiced my opinion if he would have grown so tall?

We wait, for results.  This last test, a camera endoscopy is a pill he swallowed that is an actual camera.  It takes thousands of pictures as it goes down to his colon.  An amazing test, cutting edge technology.

We have no answers.  No treatment right now except the steroid inhaler he puffs in his mouth and swallows to hopefully help his EE.

This is a long journey, and its been very difficult to be patient.  I knew something was wrong with our son the minute his baby teeth came in, that was 19 years ago!    All of the doctors we took him to looked at me like I was a hysterical mother.  Nobody listened or believed me.

All i can say is this, keep fighting and never give up.  Our 11+ year battle is far from over.