13-year-old daughter with refractory epilepsy

Thank you @santosha for the mention. @ebrown78 I would absolutely recommend trying to get into the Mayo Clinic JAX campus, but obviously, Rochester is the mothership and the flagship in the Mayo family. The first and foremost thing is getting a referral to Mayo. This is the ticket into consideration. Have your local epilepsy center/neurologist communicate with Mayo for a referral into their program, with details about your daughter's severity and number of seizures. Then I'd call the Mayo neurology scheduling department to see what they can do to help you, and just be prepared with all of your insurance details. As I've mentioned before, I had to work very hard with my insurance company for over two years to secure a spot at Mayo. They never cooperated despite my going to the insurance commissioner for the State of Florida, our local representatives, social media, etc. It wasn't until I was placed on disability and then Medicare that I was able to be seen at Mayo. Mayo was very open with me about my options, and we even discussed selling our house fund to get my case reviewed. In my situation, was that bad. I've been asked multiple times, was it worth it all? Going to Mayo was life-altering. The neurologists at Mayo are second to none. I felt like a human being again. Did they fix me? No, but they gave me confidence that they'd give me the best care possible. The best thing also about being involved with Mayo is that you join a group of people who will do anything possible to help you, to encourage you, and walk with you through each part of the process.

I'd also try to prepare yourself if Mayo is not an option at this time. Consider finding a Level-4 Epilepsy Center near you. Typically, this might mean a teaching college. You probably already know this. While I am a stickler for owning my diagnosis, as is my wife. I take notes of every seizure, when it happens, what happened before, what happened after. What I ate, what was the weather (temp/humidty), stresses, medications, everything. While other great doctors will review this, Mayo will study it and above all video EVERYTHING. Think of the Mayo team like a huge chessmaster. They can put everything together with a multidisciplinary approach unlike anything you can imagine. If you have to stay more than a week, consider looking for a short-term, corporate apartment rental. There is one right near the JAX campus that saved us thousands.

Your heart is very full, and we can empathize. Just do us all a favor and take a deep breath and enjoy what you have today, just this day, just this moment. Mayo helped me do this. I wasn't epilepsy, I was a man who had a chronic medical condition. I didn't have seizures (although I do) I had events. This simple change in wording helped me immensely and helped me view my life outside of our condition. Keep us posted and we'll all do everything we can to help you.

Thank you @santosha for the mention. @ebrown78 I would absolutely recommend trying to get into the Mayo Clinic JAX campus, but obviously, Rochester is the mothership and the flagship in the Mayo family. The first and foremost thing is getting a referral to Mayo. This is the ticket into consideration. Have your local epilepsy center/neurologist communicate with Mayo for a referral into their program, with details about your daughter's severity and number of seizures. Then I'd call the Mayo neurology scheduling department to see what they can do to help you, and just be prepared with all of your insurance details. As I've mentioned before, I had to work very hard with my insurance company for over two years to secure a spot at Mayo. They never cooperated despite my going to the insurance commissioner for the State of Florida, our local representatives, social media, etc. It wasn't until I was placed on disability and then Medicare that I was able to be seen at Mayo. Mayo was very open with me about my options, and we even discussed selling our house fund to get my case reviewed. In my situation, was that bad. I've been asked multiple times, was it worth it all? Going to Mayo was life-altering. The neurologists at Mayo are second to none. I felt like a human being again. Did they fix me? No, but they gave me confidence that they'd give me the best care possible. The best thing also about being involved with Mayo is that you join a group of people who will do anything possible to help you, to encourage you, and walk with you through each part of the process.

I'd also try to prepare yourself if Mayo is not an option at this time. Consider finding a Level-4 Epilepsy Center near you. Typically, this might mean a teaching college. You probably already know this. While I am a stickler for owning my diagnosis, as is my wife. I take notes of every seizure, when it happens, what happened before, what happened after. What I ate, what was the weather (temp/humidty), stresses, medications, everything. While other great doctors will review this, Mayo will study it and above all video EVERYTHING. Think of the Mayo team like a huge chessmaster. They can put everything together with a multidisciplinary approach unlike anything you can imagine. If you have to stay more than a week, consider looking for a short-term, corporate apartment rental. There is one right near the JAX campus that saved us thousands.

Your heart is very full, and we can empathize. Just do us all a favor and take a deep breath and enjoy what you have today, just this day, just this moment. Mayo helped me do this. I wasn't epilepsy, I was a man who had a chronic medical condition. I didn't have seizures (although I do) I had events. This simple change in wording helped me immensely and helped me view my life outside of our condition. Keep us posted and we'll all do everything we can to help you.

Hi @ebrown78
Good Morning!
Wondering if your daughter has already been seen at an Epilepsy Center before?
Chris

@ebrown78, I hope you don't mind another question - I'm just trying to understand your daughter's situation better to see if I might have any helpful insights.
Could you share what age your daughter was when this new onset of seizures began? Also, has she started her menstrual cycle yet?
I'm asking because hormonal changes can sometimes trigger epilepsy onset, especially in young women. Some experience their first seizures during puberty when hormone levels fluctuate significantly - this was actually my experience as well.
The Epilepsy Foundation has an article about the connection between hormones and epilepsy: https://epilepsyfoundation.org.au/managing-epilepsy/women-and-epilepsy/epilepsy-and-hormones/
Has your daughter's neurologist discussed whether hormonal changes might be contributing to the changes in her seizure pattern?
Chris

@ebrown78 It's so funny to hear you say the words "mystery" because I hear that every time I go to the doctor. I have to remind my doctors that this is why I am seeing them. If my case were easy, then I would have no reason to see the best of the best. Have you been to the Mayo epilepsy program before? I'd love to learn more about your experience. I also want to say that you're doing such an incredible job. The fact that you haven't given up is what sets you apart. You and your daughter are true champions, even if you don't feel like it. Show yourself self-love and know how much you inspire others, even if they don't say it. Keep up the fight and let me know about your Mayo experience.