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Small patient, big questions

Luke Castellanos seemed no worse for wear as he sat with his parents in a room at University Hospital recently, just a few days before his fourth birthday, posing for pictures and playing with a new stuffed dog. Luke, the youngest of five, was born prematurely, at 30 weeks gestation, and has Down Syndrome. He’s had more than his share of physical challenges, and this three-day hospital stay was another step on his parents’ journey to get answers and find the best medical care for their son.

Luke’s parents, Belarmino and Mary Ann Castellanos, vowed from the day they found out their son had Down Syndrome that he would be fine and they would do whatever they needed to do to help him. Babies are born every day with Down Syndrome and they go on to live long, happy lives. Surely Luke would be no different.

Then the seizures began.

Sometimes it’s a shaking seizure, while other times it’s an absence seizure. Both are painful for Luke’s parents to watch. They have to look on helplessly, unable to make the seizures stop. The seizure types alternate, making it difficult to pinpoint characteristics and figure out what type of epilepsy he has. In addition, Luke is nonverbal, limiting his ability to communicate what he is feeling. He’s so small and going through so much, but no one had been able to definitively say what could be done to help. Luke’s family found Dr. Linda D. Leary, a pediatric epilepsy specialist at UT Medicine who develops customized treatment for children suffering from unexplainable seizure episodes.

Luke was originally referred to Dr. Leary because he didn’t have all of the markers for Lennox-Gastaut syndrome, or LGS, a severe form of epilepsy that causes multiple types of seizures. Previous testing of Luke’s brain activity had been over the course of six to eight hours. Dr. Leary arranged for longer-term observation for Luke, which prompted the three-day hospital stay. During the three days, Dr. Leary would get two EEG reports while Luke slept: one from his brain activity, generated from the electrodes attached to his head, and one from video observation. The combination of this information allowed Dr. Leary to decode whether activity in Luke’s sleep was related to a seizure or just because Luke was moving around like any other dreaming child. Once decoded, she relayed the results to his parents, regularly coming into Luke’s room to personally let them know if he had spikes as soon as he fell asleep.

“We get a lot of feedback from her; she’s just been awesome,” Mary Ann Castellanos said of Dr. Leary.

The family feels fortunate to be in San Antonio, because there aren’t many places, even here in Texas, that do overnight, 24-hour surveillance.

“There’s a big difference, because there’s someone literally watching all the time,” Belarmino Castellanos said.

Luke and his family have been through a lot and they still have a long journey ahead of them, but they remain positive. Day in and day out, they provide this tiny boy with a loving, supportive environment that will get him through the longest of days and with help from UT Medicine’s Dr. Leary and the staff at University Hospital, they are confident they will get the treatment plan Luke needs.   

In the meantime, Luke is busy being a four-year-old boy. In the hospital room, as he sat with his parents for a photo, he seemed unsure of what all the fuss was about. He seemed to be thinking “I’m just a kid and I’m in this room with a fancy crib. No big deal.”

But he is a big deal. Everything he’s going through is a big deal and his demeanor is a great example of someone who is happy despite all odds. He could teach adults a few things about just getting through and adopting the same attitude his parents maintain and pass along to him: “It is what it is. What do I need to do?”

Follow the Castellanos family on Twitter and Instagram to stay up to date on little Luke’s progress and just general inspiration on staying positive despite difficulty.