Jenna’s Story

Site created on August 4, 2013

In November, 2012, Jenna was taken by ambulance to Altru Hospital in Grand Forks. She had a seizure at school, and it was confirmed through MRI that the seizures were coming from an abnormality in the left temporal lobe of her brain. For about a year prior to this, she had been feeling ill and vomiting many times a day. Jenna had many tests and saw several gastroenterology specialists, but we were never able to figure out what was causing it. After receiving this news, it started to become clear that she had been having seizures all along. We were referred to Mayo Clinic by the local neurologist, and we've been making regular trips to Rochester ever since.

With each visit to Mayo, Jenna typically checks into the Epilepsy Monitoring Unit (EMU) for anywhere from 1-3 days, she sees many doctors throughout this time, and she's had regular MRI's to monitor the abnormality for changes. We were told that it looked like she had what's known as Mesial Temporal Sclerosis and that it responds very well to a surgery that would remove the temporal lobe and hippocampus on her left side. She had this surgery on July 19th, 2013, and has been recovering from it very well. On July 31st, however, we received some very unexpected news. Her pathology came back with an extremely rare neurological disorder called Rasmussen's Encephalitis.
 
Rasmussen's Encephalitis has very devastating, irreversible effects. Due to it's rare nature, there are not many treatment options, and there is no known cure. The only known way to relieve seizures is a hemispherectomy, in which the entire half of the brain that is being attacked by the disease is removed or essentially disconnected. IVIG is a treatment that will hopefully slow the progression of the disease, and Jenna started this treatment on August 5th, 2013. 

Newest Update

DBS surgery is DONE!

Journal entry by Danielle Rehling —

Hi Everyone! 

I threw it out on Facebook yesterday that all went fine, but I totally forgot to post a quick update here! Sorry! 

Surgery went extremely well. It was a long, grueling day. Jenna was the first case of the day with a report time of 6:30 am, but they were having issues with some of the equipment that did the preliminary imaging. That set her back several hours. Her procedure didn’t actually start until around 11:00 am, and they didn’t finish until about 5:30 pm. She had to do a final CT before she could be woken up so all in all she was under for close to 11 hours! 

When Jenna woke up, I didn’t really know what to expect, but she was in so much pain and just really upset. I was beyond sad, and at first they couldn’t get her pain under control at all. Once they did, she fell asleep and slept hard! She woke up at 4:30 am ready to get out of bed! Man that kid is such a champion, she never stops blowing me away! We discharged from the hospital about 10:30 this morning, and we’re staying across the street from the hospital per the surgeon’s orders. If Jenna is feeling fine in the morning, I think we’re going to head home. 

Jenna had a FaceTime call with her class this afternoon, and it just warmed my heart how close they all are already and how excited they were to see her! They’re such good kids, Jenna just loves them. She’s sad to be missing school!

We come back to Mayo mid December, and they will then turn the unit on and get it programmed. In the meantime Jenna should get some good healing time in. She’ll be out  of school for a few weeks and no activity for a while. She’s sad to miss school but soooo happy to be excused from dish duty! Haha! But for now, I am going to look forward to Thanksgiving coming up and being able to share it with our wonderful family. Last year I was at Mayo with my mom, and while I love the Canadian Honker, I never want to eat Thanksgiving dinner there again! Ha! So best wishes for happy holidays to everyone, and I will send an update on how things are going in the new year! 

Love from the Rehlings
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