So our kids don’t have dmd but the guilt of finding out I was the carrier for Addysons fever disorder was hard. We have a friend who is also a carrier for the medical diagnosis that touches their family. Finding out you are a carrier is emotional. It’s tough. It’s heart wrenching but through time we heal. We move forward. We keep pushing. We learn to keep pushing for our kids. For their school accommodations, their medical care, clinical trials and more.
Today we went to rheumatology. This dr was very good. She spent over and hour with us. She asked so many great questions. She reviewed records and labs. All of Addysons care teams suggested we loop rheumatology back in since they track the inflammation that goes along with her fever disorder. We have some lab work that her dr wants pulled next time she gets a blood drawl. She also said Addyson is hyper mobile and Ethen also has type 3 Eds. She said Addysons gut issues could be linked to the hyper mobility disorder as that causes dysmotility, affects sphincters, causes gerd, and more. It is interesting because we knew eds could affect gut but never had someone draw the connection. And honestly we have other gi diagnosis like pseudo obstruction. Really why she’s having the dysmotility is no longer our biggest concern, we just keep looking for the best treatment plan.