Local boy works to recover from pediatric stroke
BY LINDLEY ESTES
When Tanja Awan’s son didn’t use his left hand as a baby, she thought he was just right-handed.
And when he walked and spoke late, she thought he was a late-bloomer—though the delays raised some red flags.
What Awan didn’t know for 2 years was that Gus, her second child, had suffered a stroke in the womb.
Awan figured out what was wrong when she turned to the Internet and found a picture of a child with hemiplegia, the total paralysis of one side of the body.
“I saw the picture and noticed that that’s the way that Gus sits, with his left fist up and close to his chest,” Awan said. “I did more research and took him to a doctor. I basically diagnosed it myself.”
Parents would more readily expect an ear infection, rash or common cold in their children. Rarely would they ever expect a stroke.
According to the National Stroke Association, fewer than 1 percent of children younger than 15 will suffer a stroke each year. This figure slightly increases for children under the age of 2.
Dr. John Pellock, chairman of the division of child neurology and professor of neurology at Virginia Commonwealth University, said he does see a number of children every year who who have had one.
“It’s so rare that most general pediatricians know it happens but may only see one or two during their careers, if they see them at all,” Pellock said.
A challenge in diagnosing pediatric strokes is that most parents don’t think children are at risk for them. It’s not the first thing most physicians consider, either, when a child has delays like Gus did.
“A 3-year-old doesn’t come in overweight and with hypertension,” Pellock said, describing stroke risk factors for adults. “Unlike adults, there is not one profile for a child with stroke.”
Strokes in children “can be caused by trauma to the head or neck in newborns, can be secondary to infection or congenital abnormalities,” Pellock said.
Stroke symptoms in children, according to Pellock and the National Stroke Association, include but aren’t limited to:
- Loss of motion on one side of the body
- Change in mental state
- Speech issues.
“It’s the brain, so you have so many different problems that could occur,” said Ryan Lockwood, manager of Children’s Hospital of Richmond at VCU’s outpatient center in Fredericksburg, where Gus goes to therapy.
WHAT RECOVERY MEANS
Finally figuring out what was going on with her son was emotional for Awan.
“When you have a baby, you think everything’s going to be OK,” she said. “You know that there are risks, but those are in the back of your mind.”
The late diagnosis allowed her to have more children without fearing that they, too, would suffer from pediatric stroke, she said.
But getting the proper diagnosis was critical to effectively working on Gus’ difficulties with movement and speech.
With strokes, “the good news is that recovery is much better in children,” Pellock said. There’s greater plasticity in a child’s brain and nervous system than in an adult’s.
But recovery isn’t a “problem-solved” kind of recovery, Lockwood said.
“Getting them to be functional and participate with peers is more the definition of recovery,” he said.
Awan said her son’s recovery is going well. Now 13, Gus regularly has physical and occupational therapy. He also goes to a speech therapist at his school, Freedom Middle in Spotsylvania County.
“He’s going to have lifelong issues, though,” his mom said. “He’ll really need to have physical therapy for the rest of his life.”
Gus does a lot of stretching in physical therapy to help his body adjust as growth spurts come his way during the teen years, his mom said. He also works on balance and walking.
“Walking wrong impacts his bones,” Awan said.
She worries that he won’t keep up the physical therapy on his own as he gets older, so she considers the therapy especially important now.
Gus also works with an occupational therapist on mobility in his left hand. Gus’ restricted mobility means it took him longer than most kids to learn to do things like tie his shoes.
“It’s hard watching him want something and not feel like he can do it,” Awan said. “It took until he was 10 or 11 until he was really proficient [at tying shoes].”
But Gus has made considerable progress, even learning to play video games that require much use of his hands.
One therapy Awan said really helped her son was Botox injections.
“It relaxes the muscle,” she said. “He was 3 when we tried it. It was a life-changing thing. The neurologist applies it to the spastic muscles. He turned his wrist and moved his thumb for the first time with it.”
The rarity of Gus’ condition means there’s been little research into how to best improve function for children with strokes. Pediatric strokes have begun to be researched only in the last five to 10 years, Pellock said.
The obscurity has driven Awan to advocate for more awareness and research. She calls advocating “her big passion.” In May, Virginia adopted a resolution that Awan created to make June pediatric stroke awareness month. Awan also hosts local fundraisers to generate support for researching the condition.
Awan said it’s hard to find people to connect with locally who have experienced the effects of pediatric stroke. But she’s connected with the national Children’s Hemiplegia and Stroke Association (CHASA) and attended the group’s annual retreat.
“It was life-changing because we had never really been around a lot of kids with that issue,” she said. “Going there and being with 63 other families normalized it. It answered so many questions in a heartfelt way. You have unspoken questions about your child’s future.”
Pediatric strokes can be caused by birth defects, trauma, infection or blood disorders. They can happen in the womb or in the early years of a child’s life. Symptoms include change of mental state, fever, speech issues and paralysis. To learn more, visit these sites:
- Children’s Hemiplegia and Stroke Association: chasa.org
- National Stroke Association: stroke.org
Lindley Estes: 540/735-1976