A lady from the Children’s National surgery deapartment called this morning to update Belinda’s medical records in anticipation of the dilation procedure.
She asked about allergies, existing conditions, covid history, etc. She confirmed Belinda had Ehlers-Danlos and then asked if she also had POTS. I said no, as far as I know. I have been looking at finding an Ehlers-Danlos specialist who could examine her (and hopefully me) and give us some more info on what the diagnosis means for us and what other issues we could have or face in the future. But they’re in Tulsa so I just haven’t done it.
I really should since we recently learned we’ve met her co-pay and out-of-pocket for the year. We aren’t going to have to pay anything for Children’s National this time. I also have set up a wisdom tooth consultation and I need to get the Ehlers-Danlos eye exam set up. There’s not much year left!
Anyway, they’ll call us the Friday before the surgery to let us know what time.
Chris and I were tested for Ehlers Danlos and Marfan which is another connective tissue disorder with some similar symptoms, so we have connective tissue issues in our family too. It can cause scoliosis and chronic migraines and bendy fingers and foot pain and all kinds of other issues that Chris has. I don’t know what we would have done without Ocag and homeschooling.
We only checked into that to see if it was related to the swallowing symptoms she had, and then to just have the information before surgery. I don’t think it affects her very much. The doctor who diagnosed Belinda said I had it as well, although I did not get an official diagnosis. I have a lot of health issues and my doctor has been treating me for psoriatic arthritis, based on the fact that Marissa had that. I now believe that my issues are ehlers-danlos, and I think that was probably the case for Marissa as well. I am glad that we are looking into it before it gives Belinda issues. I just don’t know exactly how to proceed myself. I’ve read that there are good EDS doctors in the Tulsa area but that seems overwhelming at this time.