I've finally gotten around to creating a Facebook page for us:
We would like to have some parent input regarding what medical information they would like to have regarding EA/TEF and ongoing care and issues. Time commitment would be 1-2 phone conferences a month for possibly a few months.
Please private message me or email me if interested. We're looking to have the first phone conference at the end of May.
Dr. Daryl A. Scott and researchers in his laboratory are working to identify the genes that cause EA/TEF. A brief description of his research can be found at http://www.bcm.edu/genetics/?pmid=11041. Families interested in learning more about participating in genetic studies on EA/TEF can contact him via e-mail at email@example.com.
Daryl A. Scott, MD/PhD
Baylor College of Medicine
R813, One Baylor Plaza
Mail Stop: BCM 225
Houston, TX 77030
Web page: http://www.bcm.edu/genetics/?pmid=11041
There are so many things to learn when you have a child born with ea/tef that certain aspects of the condition remain a little fuzzy for a while. You figure out the eating stuff quickly. And surgeries, you focus on those too. But you keep hearing one word that you can’t quite keep in your head, the whole word anyway: trachea- something.
Strictures develop post surgery usually because scar tissue grows at the surgery site. Scar tissue, sadly, is inevitable, but not all ea/tef children are affected by it. Some have their esophagus repaired and never look back. Others need a few post-op dilations early on before being able to take the surgeon’s phone number off the speed dial.
A few ea/tef children need to be dilated even years after surgery. My son is one of those. After the dozens of dilations he had early on, going in twice a year to be dilated seems pretty manageable, if not exactly fun.
What are proton pump inhibitors, anyway?
Chances are, your child is has been on one or is on one now, since PPI’s are a primary weapon in the arsenal against reflux and esophagitis. Here’s how they work: Your stomach produces acid to help break down food so it is easier to digest. In certain circumstances, this acid can irritate the lining of your stomach, esophagus and duodenum (the top end of your small intestine), causing indigestion and even ulceration and bleeding. The proton pump inhibitors work by blocking the production of stomach acid. They do this by inhibiting (shutting down) a system in the stomach known as the proton pump.
The revelation came over dinner at the hospital cafeteria. Our son James, the youngest, was in the hospital again (pneumonia that time, I think) and I’d taken our two older children to get something to eat. During the meal, I played the role of journalist, asking both Catherine and Aidan what it was like to have a brother in the hospital.