Eli's Story

​Because he was born with Down syndrome, Kari Ebel and her husband were vigilant in monitoring their son's movement and milestones. When they noticed his head dropping and his arms pulling in and jerking, they were quick to bring it up at Eli's therapy appointment.

The therapist confirmed that this movement wasn't normal, and Eli's pediatrician set up an appointment with Dinesh Lulla, M.D., at Boys Town Pediatric Neuroscience. With the help of EEG technology, Dr. Lulla diagnosed Eli with infantile spasms - a rare form of epileptic disorder. Time is of the essence when it comes to treating infantile spasms, so the neurology team quickly prepared a treatment program, building a relationship with the Ebel family along the way.

“Dr. Lulla has been amazing,” Kari said. “He's been very open with us. We're very blessed, and we put a lot of trust in him to help lead us through this.”

To learn more about Eli's journey, watch the video below.

Eli’s Story: Infantile Spasms​

• Transcript

  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.