Support Chloe’s Journey with PNES

This is Chloe. She’s a beautiful 15 year old with a HUGE heart. Shes a good student, athletic trainer, and works a PT Job. On October 20th though her life changed. While her mom attempted to wake her up for church she had a Grand Mal Seizure. Her parents called 911 and she was taken to the ER. The Dr there felt there was no need for concern and sent her home. For the first week after she slurred words and complained of chest pain. To get her seen by a Neuro locally was a 6-8 months wait. Her parents didn’t think this was logical and got her into a neurologist at Vanderbilt (roughly 4 hours away) within 10 days. She had an EEG done and it was abnormal. Based on her EEG and symptoms the neurologist diagnosed her with epilepsy. She started Medication. She was also scheduled for a MRI, To which they returned to Vanderbilt for, a week later.

The neurologist was concerned with her heart rate being high and referred her to a pediatric cardiologist. At that appointment he felt she may have POTS as well and we are still being evaluated for that.

Let’s fast forward to this week. Chloe is having 3-7 seizures a day. She is missing a lot of school. Tomorrow (12/4) we get admitted at Vanderbilt for a 24 hour EEG with video. We are sure hoping to get more answers from that.

Chloe is scared. She feels her whole life has changed and with so much uncertainty it’s hard to convince her otherwise. Her entire family is terrified and we all just want her well.

Financially, her mom has PTO and her place of work has been VERY understanding. Her dad however had no PTO Available. All days he misses for appointments are unpaid. And on top of missing work, they also have 4 hour drives (one way) to most of her appointments. Currently they are driving round trip, which makes for long days, but they make it work. And on top of it all it’s the holidays.

UPDATE: 12/5/2024

Today they arrived home from their 24 hour stay at the hospital. Her 24 hour EEG showed the Drs a lot. They actually retracted the epilepsy diagnosis, PRAISE THE LORD! But have instead diagnosed her with PNES, Psychogenic Non Epileptic Seizures. Yes, she has seizures. Yes, they are real. However, these are not caused misfires or electrical activity in the brain. These seizures are her bodies way of dealing with stress and anxiety. No more seizure meds. Instead she is on a higher dose of anxiety meds and will now be seeking out a cognitive behavioral therapist to help her and her brain find new ways to cope. There is still lots of travel in the future and the POTS diagnosis is still a possibility. But, this definitely had gave her some relief. With all that said, the first seizure witnessed on 10/20 was indeed a TRUE epileptic seizure (and there is a possibility she can have another and have to go back on meds) but the episodes since he believes are PNES. He stated the initial seizure could have sparked the PNES, just because of the stress it put on her and the trauma it caused her.

Also: HUGE THANK YOU to those who have donated, texted, called, and prayed. Your kindness, generosity, and support has not gone unnoticed.