Tuesday, June 14, 2011

{update on Caroline's condition}

I felt I owed an update on Caroline. I want to first thank you for the kind thoughts and prayers I have received throughout all of this. I am a "problem-solver" by nature, and nothing is harder for me to go through than something that I try to fix, and can't. That helpless feeling is the worst for me! A good lesson to keep trusting in God, though. He always answers.

Last week, we had our follow up appointment with the GI specialist here in Beaumont. Biopsy results came back that enzyme levels were normal and no evidence of Celiac Disease (Gluten-intolerance). (Can I get an Amen? :) My Dad was able to witness what I have been feeling all along, which is that Caroline is a number, not a patient. I have to regurgitate her entire health history at every monthly appointment we have had, and he continued to ask me to try the same things month after month, when we had already tried them unsuccessfully. I have no doubt he is a good doctor, but I felt a lack of creative care in searching for a cause of Caroline's problems, rather than just treating some of the symptoms.

Good friends of ours led us to a doctor at Texas Children's Hospital in Houston, one of the top Children's Hospitals in the world. Anyone I have ever spoken to who had had business there in one way or another has done nothing but rave.

We were able to get in to see the Chief Pediatric Gastroenterologist at Texas Children's Hospital today. He read through Caroline's medical records, my own spreadsheet of notes (those who know me well are probably getting a kick out of that one), and Endoscopy notes and results. He was a great listener, and asked meaningful questions. I never felt rushed. It was wonderful.

He says that there is no hard evidence from her Endoscopy showing that Caroline has a milk protein allergy (something I have been told for the past year). One thing that was found in the Endoscopy procedure was that she has an anatomical abnormality in her esophogus/stomach called a Hiatal Hernia. There is more of an opening from her stomach into the esophagus than should be, which causes the reflux. So, instead of the milk protein allergy causing her reflux as we believed before, it is the Hiatal Hernia. We have been treating this all along-- Prevacid neutralizes the pH in her stomach, so that there is no long term damage should anything come up.

He wants me to try food again, and once we have established solids, then we can explore the formula option. He also prescribed another topical medication for the diaper rash.

I feel good about this. I know that there wasn't much we heard today that we haven't heard before. I feel as though there is some hope, and I will get an answer soon. I didn't feel like a number. And I did feel like he cared about helping us get Caroline back on track.

1 comment:

arg said...

I'm so sorry that y'all are having to deal with all of this but I'm so thankful that you're feeling better about the direction its going. I can't even imagine! And C is such a lucky girl to have you (and your spreadsheets) as her advocate (and her momma! :)). xx