Dear Friends,
Thank you so much for your support. It seems endless. We had not intended to continue this site, but it truly is the most practical way to share our updates with the many people who have supported us over the last year.
After months of waiting, we were able to see the appropriate neurologist and rheumatologist at Mayo Clinic last week. Unfortunately, they could only see us on Tuesday and again on Friday, allowing us plenty of time at the Mall of America. We stayed with our wonderful friends in Minneapolis, who are the same friends that were with us during our nightmare over Spring Break.
The Mayo doctors were very impressive (and nice). They had reviewed all of our materials, and they each spent more than an hour examining Charlotte and discussing alternatives. The good news is that they fully agree with the diagnosis (steroid responsive encephalopathy associated with thyroiditis) and treatment to date. The bad news is that they don’t have any new ideas on how to treat Charlotte. Unfortunately, the treatment of this type of disease is trial and error since there is such limited research.
Their suggestion (which is the same as our Vanderbilt rheumatologist’s) is to work with our team here to move Charlotte to “immuno-suppression” to try to reduce the steroids. These drugs are typically used for organ transplant patients, cancer patients and to treat auto-immune disorders like Lupus and Rheumatoid Arthritis. They carry different side effects and risk factors than steroids. If they work, and if we are spared the riskiest side effects, they are perhaps more sustainable than steroids. The Mayo neurologist believes it will be two-years before we can determine the success of this therapy, and that it will be more “thorny” than the past year. Great.
We are glad to be so confident in the diagnosis, and to have access to such incredible experts and resources. We are fortunate that we have such a strong community of support for this is a long and thorny road. We also appreciate you continuing to treat Charlotte just like any other kid, because that’s what she is.
