‘He’s a Superhero’: Young Child Battles Back from Stroke

What started as a normal day with a toddler’s temper tantrum turned into a month-long recovery from a severe stroke.

Four-year-old CJ was known for temper tantrums and holding his breath when he was upset. But one morning while getting ready for school, CJ threw himself on the floor and began screaming and crying. When his legal guardian Rachelle Lipka saw what was happening, she immediately realized this time something was different.

“I stood him back up and was hugging him and he was hugging me back, but he was only hugging me with one arm,” Rachelle said. “I asked him what was wrong and he wouldn’t answer me so I pulled him away to look at his face and he was still crying, but his mouth looked crooked.”

Although she had doubts her 4 year old could have a stroke, Rachelle was aware of the symptoms and took CJ to their local hospital in Cleburne, Texas. Physicians made the decision to transfer CJ by ambulance for an MRI at Cook Children’s.

“It was like we were watching him deteriorate right in front of us,” Toliver Lipka, Rachelle’s husband and also CJ’s legal guardian, said. “A lot of people were preparing us for the worst.”

Depending on where the stroke occurs within the brain, recovery will differ in every case. However, receiving treatment quickly can help limit a stroke’s damage. Currently, 80% of children who have suffered a stroke will have some type of neurological deficit resulting from the stroke, according to Marcela Torres, M.D., a Cook Children's hematologist and oncologist and co-medical director of the Stroke and Thrombosis Program.

“It just changed so fast. I was with him at our [local] hospital and he was normal besides his smile,” Rachelle said. “By the time the MRI was over he wasn’t talking, he was drooling and his sentences when he did try to talk were jumbled. We couldn’t understand him.”

A high percentage of childhood strokes can be traced to cardiac disease, blood vessel disease or sickle cell disease, although some families can be left without an identifiable cause.

CJ was diagnosed with focal cerebral arteriopathy, which is linked to inflammation and is often found in chickenpox (varicella). But it can also be linked to other infections through a virus, Cook Children’s nurse practitioner Jo Tilley said.

“He always had a runny nose, but he goes to daycare so we just thought he was sick. The neurologist told me there’s often a link between pediatric stroke and viral infections,” Rachelle said

Once diagnosed, doctors use a stroke scale to determine the extent of damage, which allows the neurology team to plan a course of treatment.

“The stroke scale is a quick way to focus in on the symptoms that a stroke causes, to quantify the symptoms and determines the stroke severity,” said  Fernando Acosta, M.D., a neurologist and co-medical director of the Stroke and Thrombosis Program at Cook Children's. “The stroke severity will determine what acute interventions may or may not be appropriate for the patient, and it’s a way to follow the patient’s progress.”

CJ’s stroke was considered severe and he needed admission to the Neurological Intensive Care Unit before he started speech, occupational and physical therapies at Cook Children’s Rehabilitation Unit.

“Even though there has been lots of progress in the treatment of adult stroke, there are huge gaps in pediatric stroke treatment,” Dr. Torres said. “Fortunately, there’s a lot of ongoing research in pediatric stroke and Cook Children’s remains at the forefront of it.”

CJ stayed in the pediatric ICU for a week until he was cleared for physical, occupational and speech therapy. A month later on his fifth birthday, he was released from the hospital.

Childhood strokes can impact various motor and cognitive functions, some patients can have both depending on treatment and severity of the stroke.

“If you didn’t know he was a stroke victim, you’d never be able to tell. He has a bit of paralysis and walks with a brace, and he’s switched to being left-handed because it’s a bit of a struggle to use that right arm,” Toliver said. “We can only tell because we’re around him every day”

Rachelle and Toliver recognized an immediate change in CJ’s personality after his stroke and said it was as if they had to get to know a new child. Before CJ’s stroke, he was argumentative and his guardians said he seemed just like a little adult, but six months post-stroke he has fewer tantrums and acts like a typical kid again.

“Depending on the location of the stroke, there can be personality or behavior problems, there can be motor problems such as incoordination, weakness, increased muscle tone, abnormal movements and visual disturbance,” Dr. Acosta said. “If it’s a larger territory stroke then you have any combination of those. We usually see a combination of these changes in kids with these deeper strokes.”

Although CJ is still experiencing some weakness on his right side, his ranch animals are helping him with his own version of physical therapy back at home.

“We have a small ranch and he helps us work on it now. He works hard,” Toliver said. “When we got back from the hospital he went straight to the fence to meet his donkey. He helps me steer the tractor, and that’s really helped with his physical therapy.”

While they would never have imagined CJ would have a stroke, Toliver and Rachelle felt at ease knowing he was a member of a different type of family at Cook Children’s.

“The team in the PICU were just angels,” Toliver said. “They took care of CJ like I had never seen anyone do before. In addition to that, they made sure we were always comfortable. It was just the best experience that could have come from this as far as being in a hospital.”

As CJ continues to recover, his guardians are amazed by his progress and resilience.

“He’s our hero. He’s a superhero,” Toliver said. “CJ is just so unique, he changed our lives.”

- By Ashley Parrott