Peyton’s Story

Site created on December 31, 2017

The short, over-simplified version:

I had a bunch of seizures, almost went into a coma but didn't, had a brain biopsy, got rid of a brain infection, but there are still some lesions left behind. 

Then I was diagnosed with epilepsy. 

Now I take drugs every morning and night and get MRIs every couple months to make sure the lesions don't grow.

Newest Update

Journal entry by Peyton Cabaniss

Hello! I'm currently in the airport on my way back from my second trip to Mayo. I had more scans and met with Drs. Petty (neuro) and Koster (rheum). As I mentioned previously, I've been on high-dose prednisone since Spring Break, but luckily that's working and my scans improved a lot, which is great. What is improvement: basically a lot of areas used to light up and now less areas light up, which is great. 

Since things got better, I get to sloooowly taper off the prednisone, which is a steroid, and replace it with azathioprine, which is not a steroid, over the next couple of months. I'm on those because they are immunosuppressants. The prednisone side effects haven't been nearly as bad as I expected based on my previous steroid experiences, but the facial swelling is finally kicking in so I'm ready to be done with that.

I'm also now enrolled in a Mayo research study led by Dr. Lehman in Mayo's radiology department, which yes I will be adding to my resume despite the fact that my only contribution to the study is lying in a large magnet for a slightly over an hour every few months. My medical treatment plan won't change; they just use the scans I get for my clinical care (MRIs and MRAs) and then do a short extra scan for their study. I met with the research coordinator in charge of me on Monday. Her name is Sue. She's fun. She taught me a lot about different brands of MRI machines. It's moderately fascinating.  

The very basic gist of the study is that CNS vasculitis is really hard to diagnose and they're trying to find out if this extra scan will help diagnose CNS vasculitis earlier/more easily. And if they can prove that, they can add this extra scan to the "gold standard" for vasculitis, which would encourage insurance companies to cover this extra scan if vasculitis is suspected. I'm in a pilot study with about 15 other people and if this study goes well, it will lead to a bigger study. Sue said that this pilot study will end up in a radiology journal in about two years, so my newfound dream of being published in a medical journal will come true circa 2021. Will I be listed as an author? No. Will my name be anywhere in the journal article? No. But will I be signing copies of the article for those interested? Yes.

I'll be back at Mayo in late July for more scans and to see Dr. Koster. Also, I highly recommend Queen City Coffee & Juice if anyone ends up in Rochester. 
Patients and caregivers love hearing from you; add a comment to show your support.
Can you help power Peyton's site?

A $30 donation powers a site like Peyton's for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Tasks