Flakey and not just the crust

So I was reminded today that I have been quite remiss in maintaining my blog. I need to get back in the groove. But here is what has been happening.

In the middle of April, Ethan stayed home from school for two days because his stomach hurt. We wrote it off as constipation and increased his Miralax. After two days, he felt better. Case closed….Not!

I will get to the cause in a minute, but I want to share the real reason. I tempted the fates. I had been reading on the VACTERL email group and I saw that there was a new member that was in the throes of the initial diagnosis. I remember thinking, “Wow, that was a real ordeal. I am glad that I am past that phase.”

And there it was. I had tempted fate.

So back to my story. We thought we had resolved the problem. But then next week, it happened again…and again. So we took him to his primary care physician. His response “Meh, I don’t know.” So we took him to his GI. He quizzed Ethan about his symptoms and he could not clearly articulate where it hurt. Ethan just said it is my stomach. Everywhere he prodded, Ethan said it hurt. So again we think he might be impacted. Xray…nothing. Another week goes by. Still sick. GI wants to do a colonoscopy. OK, given where Ethan said it hurt it made sense. Result? Clean as a whistle.

Now at this point something happened that if I had put 2 and 2 together, I might have figured it out. The day after the colonoscopy, Ethan said he felt fine. Ah…I thought, the bowel prep for the colonoscopy cleaned him out. That was the problem all along. Again, case closed.

Ehhh…wrong answer. We have some lovely parting gifts including Turtle Wax and Rice-o-Roni (the San Francisco treat).

A week later, all the symptoms returned. It was at this point that I decided in my infinite wisdom that it was psycho somatic. Something must be happening at school. Maybe there was a bully. I had no doubt that his stomach hurt, but I was sure that he was making it worse because of some psychological problem. I was sure of this because he could not point to the specific location that hurt. And every time he went to school for a day or two, he would report that his pain level had increased. Daddy is a genius. Ummm…Yeah, a not so much.

As a last straw, we decided to take him to his allergist at Hopkins. I thought this was a huge long shot. He looked Ethan over, took a blood sample and asked us to get an endoscopy. This really didn’t make sense to me because the pain was in his lower abdomen. But fine. We’ll do it.

The day of the endoscopy, I was out of town at a convention. Jenn called me on the brink of tears. It was his esophagus. His asophagitis was back with a vengnece. More who-de-whats-its than they could count (The medical term is more than I can say or spell. And the blood work was back. He is now allergic to beef and pork. What????!!!!

Yep, allergic to red meat. I could not believe it. The two things we can reliable get Ethan to eat are burgers and bacon…occasionally a hot dog. Ethan was devastated. Jenn was frustrated because Ethan is a finicky eater as it is. And there goes two major sources of protein. He is allergic to nuts and soy. I thought we were screwed.

So that was about a week ago. Since then we have been able to get him to eat turkey bacon and chicken hot dogs. Hopefully over time we can increase his range of protein to regular chicken and turkey burgers.

It took about a week, but yesterday he informed us that the pain was gone. I think back to that email I read on the VACTERL forum. I guess the battle has not yet been one. We are not constantly at war every day, but battles do flare up from time-to-time. VACTERL never goes away. Sometime it seems dormant, but it is not gone.

So my sage wisdom for the day? I have nothing to say except don’t tempt the fates.