Don't Ask Don't Tell? Not anymore!

This is a story about a little boy. He is adorable, and even though the mother is saying it, I have heard it from others. I believe them too. He was a happy child, but chronically ill. We lived in the emergency room for 12 years. Literally! We would hear the midnight "bark" from his room or wheeze with crying and it was off and running. Now, our home was just 6 minutes door to door, though I am not exactly sure if that was within the speed limit. I must have been close, but I can honestly say I never looked!

Ear infections and respiratory infections that caused him to have croup. Breathing treatments, antibiotics, steroids. Good times. NOT! But we were grateful for the emergency department. They got to where they knew him and as soon as we came in the door they got him back to the room. Wonderful (I think). I would far rather be known at Target or Cheesecake Factory, but no. Sigh!

Anyway, we were sent to allergists who wanted to test him and put him on life long shots, pulmonologists who wanted him on 3-4 time a day breathing treatments and steroids. Something never felt right, I never said yes. We went to all of our appointments, got all of the shots and annual blood work.  It would be at his 12 year old exam that our nightmare, or answer, would begin. He was a mere 68 pounds and 4'7". And for the umpteenth time we were told his labs were a little abnormal, that he was anemic and that a specialist suggested iron. Oh and his thyroid was off so we need to see an endocrinologist right away. Now the boy had been on supplements and vitamins since he was three weeks old, so, what?

Well off to the Endocrinologist we went. The entire time we are there she is asking us about a hematology oncology referral. We had no such referral. So I finally asked to see the lab report and upon looking I my heart stopped! As a nurse I can tell you I have seen dying people with better lab work. Horrified! I had not been told about ALL the lab values. And I never asked! It never occurred to me. The doctor never told.

I realized it must be a Don't Ask Don't Tell clause I missed.

So I picked up a copy of all the lab work on the way home and put it in a spreadsheet. I am a nurse after all. I started making some phone calls. Within a couple of hours I had a hematologist I never met calling me at home at 7 pm at night. He had seen the spreadsheet. We saw him the next morning. After some office tests it was either cancer or celiac disease. All I heard "his life could end cancer" or "never eat again celiac disease".

This lovely specialist connected us with a gastroenterologist (GI doc) and within a week he was seen, had a scope and was diagnosed with Celiac disease. Gluten was killing our son. The only two food groups this child ate for 12 years was gluten and dairy. Seriously!! I called him a dairyterian.

In four months he grew 5 inches, 70 pounds and 5 shoe sizes. WOW! Literally busted out of clothes every two weeks. It was crazy.

Three years later he is 5' 5 1/2", 190 pounds and has NOT been sick or to the emergency room except one time for an intestinal virus. ONE TIME THREE YEARS! He is pink, a color he had never had before experienced behind his blue lips and pale skin. He has energy and no longer needs to be forced to run or be dragged around the track. He won his last meet by a mile! And he eats...everything. I mean.....everything!

So my policy changed immediately on that day three years ago. I ASK and THEY MUST TELL! I get copies of all his tests, I carry his spreadsheet to all appointments and his physicians are all amazed that this is the same little fragile boy they met in 2008.