Pediatric Epilepsy: Brently’s Story – Boys Town National Research Hospital

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
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 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.

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