Infantile Spasms: Eli's Story - Boys Town National Research Hospital
Eli is just over 15 months now. He was
born with Trisomy 21 or down syndrome
and we just knew he had lower muscle tone and head
control and so he started doing these episodes and
my husband honed in on it. These spasms, I mean
it was a head drop, arms coming in jerking. We
go to therapy twice a week with him and we went
to therapy and one of our therapists was like,
this isn't normal. She's like we need to
get him to somebody to see this and she had
got to our pediatrician and they called down
to Boys Town and scheduled an appointment
to come down to see Dr. Lulla eventually.
We live in the big town of Verdigre, Nebraska.
It's only probably 10 miles from the South
Dakota border, so we are three hours from Omaha.
We see other doctors so we're down here probably
once a month, if not twice a month. Showed up,
Dr. Lulla had seen him, kind of examined
him and kind of looked at us and was like,
we're admitting you today. They admitted him
and they had hooked him up to do an EEG on him
and they had found there's a lot of activity
going on. He was diagnosed with infantile spasms.
Infantile spasm is a rare but serious form of
epileptic disorder. It is actually an epileptic
encephalopathy, that means a child in
addition to having seizures can have
regression in his or her developmental milestones
and if this disorder is not treated on time and
aggressively, it can cause serious consequences
to the developing brain. And you know looking
back now, we were seeing those effects. He
had been rolling over. He quit rolling over.
He just wasn't progressing you know, his core
control wasn't there where it had been. Dr. Lulla,
super nice. I mean, he just is very hands-on.
He cares about Eli. He cares about his health.
He's like, I want the best, like we want to
give him the best chance at life that we can,
and so just to have somebody in the medical
field who cares that much for your child is just,
it's wonderful and reassuring to know that
he truly has Eli's best interest at hand.
So we can't say enough good things about Dr.
Lulla. We followed up in January and he did an EEG
at that time and it came back with a clear result,
so we that the seizures had stopped. He's back to
rolling over. You think of the little things,
just taking a toy from one hand bringing it to
the midline, exchanging it to the other hand. He's
back to doing those things again. We haven't seen
any signs of those head drops or those clinching
in the arms. His smile is back. He's definitely
smiling. He's giggling. We just take him to
therapy and he's lighting up the room. You know,
his smile it's like oh my gosh, these meds are
working and it's worth it, just to see that smile.
Eli and his family, his parents are part
of my family now. They are very thorough
with all the follow-up we want to do for Eli.
We've formed a very close and a strong bond
with each other. Parents always keep me updated
about how Eli is doing, about any new milestone
he achieves. He recently started smiling and
laughing and they sent us a video of that.
All these small things are special moments for
me and this is what really is rewarding for me
and makes me want to be a better physician than
I was yesterday. I feel like Dr. Lulla has been
amazing. He's been very open with us and the
staff, I mean we just feel like he's in really
good hands. We're very blessed and we put a lot
of trust into them to help lead us through this.