@dppxmom @uncledrew It’s great if you want to talk! Please do some talking here on this discussion so that others can learn. Thanks! Also, use the @ sign before the name just like I did. It insures that the correct person will get an email directly! And will save you lots of headaches!
Or, you can use ‘private messages’ especially if you want to share phone numbers or emails. You can find info on using it by clicking on the “new to Mayo Clinic Connect?” This is on the right hand side of this page.
And Welcome to both of you! I can’t believe you found each other so fast! This is a great site and the members are so helpful. I hope you’ll stay with a long time!
How did you find Mayo Connect?

@uncledrew Hi Tracy - sorry it took awhile to get back to you. We posted our questions over a year ago and you are the first to respond. It took a while to find the password and remember how all of this works.

To update you on our daughter's situation, during the summer of 2023 we switched neuro-immunologist, to have continuous medical help for our daughter while her first neuro-immunologist changed practices. The second neuro-immunologist and her team were able to work some pretty incredible magic and secure both her Rituxan and IVIG (Gammagard) through our daughter's insurance. While the Rituxan was bringing her some relief, the Gammagard has been life changing. She had her first loader doses the week of 9/11/23 and even before the five doses were complete we could already see improvement. The insurance continues to approve her medication in six month increments and currently she is approved through August 2024. We have retained both neuro-immunologists to continue to treat our daughter. The second one is now the lead, since she is working with the insurance company to continue the treatments. However, we saw the first neuro-immunologist a week ago and she felt that it might take as much as another year to see a complete recovery. Fingers-crossed the insurance company will continue to approve her treatments. Also to note, our daughter was having symptoms for many months before a proper diagnosis was made. Her health had greatly deteriorated. the diagnosis was made almost immediately when we secured an appointment with her first neuro-immunologist after a regular neurologist had said she needed more specialized care than he could provide. The correct diagnosis was made via a blood test performed at the Mayo. She has never actually been under the care of the Mayo clinic, both of her doctors are in the greater metro area where we reside.

Questions for you. How long did you have symptoms before receiving a diagnosis? Are you receiving a similar treatment plan to our daughter? Same medications or different?

We think it is worth noting here, even if the diagnosis isn't Ant-Dppx Autoimmune Encephalopathy, but a different autoimmune encephalopathy, many of the symptoms are similar, as are the treatments. We are very aware that insurance companies hide behind terms like "investigational" or "experimental", even though these are becoming very proven treatment plans. We hope you are not experiencing problems receiving treatment.

We look forward to hearing from you. You are the only person we have ever spoken to with this very rare diagnosis. Best Wishes.