We were thrilled to be able to meet Dr. M (our first hero in this entire process.) He came recommended from several places. He just so happens to practice as a general pediatrician but specializes in GI issues. At our first visit we spent well over an hour going over every bit of Charlie's medical history. He seemed concerned by what we were describing and ultimately sent us for a battery of tests. At this point we were convinced Charlie had Celiac Disease. She seemed to have the symptoms, possible familial link, etc. We half held out hope that it could be that simple and half hoped that it was something else because the thought of getting all gluten out of the house seemed a bit daunting, although great for the waistline.
We immediately went downstairs to the blood lab. It took three adults holding her down to be able to get all of the blood that they needed. I swear it looked like it was three times what they took from me in the prenatal blood work (a freaking TON.) The phlebotomists had also decided that there were so many tests being done and so much blood that was needed that they could not safely do it all in one day. GREAT!!! So, then we waited. Most results came back normal, with the exception of the fact that she was anemic and that she was lacking in some other areas...signals of poor liver function. We were still waiting on that Celiac Panel, certain that was it. Two weeks later, and after several calls to find out if it had come in we found out it was negative. This was honestly the first big blow. What could it be???
Dr. M called and explained that all appeared "fairly" normal with the exception of those few results, from the blood work. We would potentially not be able to come up with a GI issue and that we may need to move on to an endocrinologist. He did want to order one last test to explore further in order to make sure that we were looking at everything.
We quickly got an appointment and took Charlie in for an Upper GI and small bowel follow through. The whole way there we were talking and wondering how on Earth they would get a child who doesn't eat, to drink barium!!!!
Yet, they did. The radiologist asked for me to go and Judson to stay (something we continually find...mom leaves for x-ray, dad stays behind.) She tipped up the cup and literally pounded two sippy cups full of barium. Judson first helped strap her down to the table and then went behind the screen to watch the images tick by. A test that was supposed to take several hours barely lasted 15 minutes.
All that barium that she drank just pooled in her stomach. You could see it distend from the outside, you could see her reflux on the screen and most importantly you could see that NOTHING was draining out of her stomach and into her intestines. It looked like there was a plug in there. For 15 long minutes not a drop. They tilted and turned the table in every direction to let gravity do its work only to eventually see an itty bitty trickle!!! The radiologist stopped the test, there was no need to go further, they couldn't go further. We were beginning to have some answers.
Thank you for starting the blog Kelly. I look forward to reading the updates. Charlie is always in our thoughts and I hope that the answer will be here soon.
ReplyDeleteYhashika