Brently's Story with Pediatric Epilepsy
Children don’t come with operating manuals, but there’s an inherit skillset that seems to arrive with a new child - parental instinct.
A Mom’s Instinct Leads to Life-changing Epilepsy Care
Brently's seizures were always very subtle. He just would kind of roll his eyes to the right side and kind of do a little thing with his mouth. They were never what normal people think is the big convulsion ones, you know, the grand mals, so we were fortunate with that.
He was angry. He didn't have a lot of empathy. He would just kind of get so upset and worked up so fast. That wasn't him. He was a pretty happy-go-lucky, you know, kid who'd cracked jokes and bust out into a song in the middle of a sentence. That was a factor that kind of led us to get a second opinion to see you know what is actually going on here. Why is this mood change? So I definitely knew something was back, something was brewing, I just didn't know what.
I had heard about Boys Town. They just opened up the neurology department here and they could get us in right away and so I thought well hey, let's do this. Let's see if my mom gut is right or you know, see what's going on.
We came and met Dr. Klein for the first time. He was having several seizures a day that we could not see and some were lasting up to five minutes. We weren't seeing a hope for them to end so she took me to a room on a Friday and said you know, this is kind of what we're looking at, he may be a candidate for brain surgery.
"This is the area of neurons that probably migrated improperly." Doctors were pretty sure that that was the source of his epilepsy. The best bet was to go in and resection that portion of his brain with hopes that he would possibly be epilepsy free. It's scary. How is he going be after brain surgery? Will I have my same little boy back? But yet, you’ve got to do what's best for your child.
Where his lesion had developed is in the left frontal lobe and that does help control your emotion, your empathy and that kind of stuff. Now that big puzzle piece is removed from his brain, I have already seen a complete change in his personality. He is a pleasant little boy. He's busting out into song again, he just smiles, you know, I haven't seen that smile so much throughout a day for over a year.
"hold them like you're zombie, you don't have to walk. Oh, but you can walk. You're awesome!"
It was a huge step for me to come out of our comfort zone and move to a different facility and find a different doctor. I kept an open mind thinking well, we'll just see what they say. I did not know that Dr. Klein was going to be this fabulous little angel that was going to guide us through all of this. She's the first doctor who would call me. How are you doing this week? How's Brently doing? Any new changes, are the medications agreeing with him still? Dr. Fornoff, his brain surgeon, called a couple times building up to the surgery date. I would recommend it to anyone, to definitely check out Boys Town for neurology. They have made me and my family feel so safe.
"Can you run and touch the door and then come back.”
We'll just see what the next three months bring and hopefully let him be a normal little boy like what he wants to be.
Erin Hoferer had the instinct that something wasn’t quite right when she picked up her 14-month-old son, Brently from daycare. She noticed he seemed limp and had a strange look on his face. Erin took him to the emergency room where the doctors in her hometown of Creighton, Nebraska, were able to stop his seizure. For the next few years the family managed the condition until the mom instinct resurfaced.
“Your mom gut gives you this weird feeling all the time like, ‘There’s something that’s not normal here,’” Erin said. “I knew something was wrong. I just didn’t know what.”
Brently began to show more uncharacteristically angry, unempathetic behavior at school and at home. When Brently had another seizure, Erin turned to Boys Town Pediatric Neurology for help.
The family traveled from Creighton, Nebraska to Boys Town National Research Hospital to see Hannah Klein, M.D., Ph.D., pediatric epileptologist. Brently had series of medical tests and headed home, anxiously awaiting the results. They didn’t have to wait long before getting a personal call from Dr. Klein with an update.
Dr. Klein explained that there was some strange activity in Brently’s MRI. Brently showed no improvement with medication and was still having multiple seizures a day, some lasting as long as five minutes. Dr. Klein told the family that Brently was a candidate for brain surgery.
The parental concerns kicked back in. “What’s going to happen? How will he be after surgery?” Erin asked herself. “It was scary, but you kind of have to swallow [your fears] and do what’s best for your child.”
Within weeks of the operation, Brently’s happy-go-lucky personality resurfaced with laughing, smiling and spontaneous bouts of singing.
“Every day you see a little bit more of him shining through. I haven’t seen that smile so much throughout a day for over a year,” Erin said (with a big smile of her own).
There is still a journey ahead, but the family is confident they are on the right track in the care Brently is receiving at Boys Town Hospital. He is surrounded by a team of specialists in epilepsy, neurosurgery and neurodevelopment, along with wrap-around services to address any social, emotional or co-occurring conditions.
As for the parental instinct, Erin knows in her gut that she’s at the right place for her child’s care.
“I did not know that Dr. Klein was going to be this fabulous little angel who was going to guide us through all of this,” said Erin. I would recommend Boys Town Hospital for neurology. They have made me and my family feel so safe.”