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
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.