Rare condition causes stroke in 14-year-old boy

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Published April 01, 2013

| FoxNews.com

For 14-year-old Jackson Leitch, March 4 had started out like any other day.

“He had gotten up in the morning, eaten breakfast and gone to school,” Robin Leitch, Jackson’s mother, told FoxNews.com.  “There were no signs that anything was wrong.”

But when Jackson went to his health class at McCleskey Middle School in Marietta, Ga., the day took a sudden turn.

After running on the treadmill, Jackson sat down on some gym mats in the corner of the room, complaining of a headache.  A few moments later, his classmates had gathered around him, calling out for their teacher that something was very wrong.  Jackson had seemingly suffered a seizure and was drooling.

His health teacher immediately called the school nurse, who quickly identified what was happening: Jackson was showing signs of a stroke.

As the school hurriedly called an ambulance, Robin and her husband, Robert, received a phone call from the school.   They were told Jackson had suffered a head injury and was being sent to the hospital for precautionary measures.  Thinking their son had just bumped his head, they rushed to meet him at WellStar Kennestone Hospital, in Marietta.

“We got there and as soon the ambulance pulled in, we could see something was really wrong,” Robert told FoxNews.com. “He wasn’t coherent at all.  He tried to smile at us, but one side of his face wasn’t working.  We had no idea what was going on.”

The doctors at Kennestone performed CT scans on Jackson, which ultimately revealed two blood clots in his brain – the cause of his stroke.

“When the emergency room doctor came out of the CT scan, he just looked pale,” Robin said of getting the news. “He came up to me and told me about the clots.  I literally felt like I didn’t have legs.  I just fell to the ground.  I mean, how do you process that?”

After the official diagnosis, Jackson was airlifted to Children’s at Egleston, part of Children’s Healthcare of Atlanta.  Meanwhile, Robert and Robin went to pick up Jackson’s brother Alex, 16, and sister Cora, 9.  Breaking the news to Alex about what happened was considerably rough.

“He took it so hard,” Robin said. “He cried and cried, and he was so afraid.  I didn’t know what to say.”

One in 700 cases worldwide

At Egleston, a team of neurosurgeons, cardiologists and various other specialists worked together to treat Jackson and find out what exactly caused his stroke.  After three weeks, Jackson was finally diagnosed with a very rare condition called primary central nervous system vasculitis (PCNSV), a condition so rare that only one in 700 children have been diagnosed worldwide.

According to one neurologist, PCNSV is thought to be related to a problem with the immune system.    Rather than the immune system being overactive, doctors believe the components of the immune system have a hard time working in harmony with one another.

“The consequence is that you get inflammation and irritation of the lining of the blood vessels of the brain,” Dr. Max Wiznitzer, a pediatric neurologist for UH Rainbow Babies & Children’s Hospital in Cleveland, Ohio, who did not treat Jackson, told FoxNews.com.  “This causes the vessels to narrow.  When the wall is irritated, clots can form in it more easily.”

In order to treat PCNSV, patients are given a corticosteroid called prednisone, which acts as an immunosuppressant drug.  Jackson has recently started these treatments and is already showing remarkable success.  

After doctors eliminated the medical risk from bleed outs in the brain, Jackson was transferred to Scottish Rite Hospital in Atlanta, where he underwent speech and physical therapy.  After nine days, Jackson was able to go home, but he continues to do occupational therapy during the day in order to get his legs fully functioning again, as well as regain movement in his right arm.

However, the most difficult part of Jackson’s recovery process will involve his speech therapy.

“We’re concentrating mostly on his aphasia,” Robert  said.  “Bleed out in the base of the brain affected his speech centers, so there are a lot of words he can’t get right. That’s going to be the longest part for him – getting the words he wants to say connected with the words that come out of his mouth.”

But overall, Jackson continues to make great strides. He has regained almost all control of his right side – save for his arm – which was the side weakened by the stroke.  Doctors told Robert and Robin that if this was going to happen to Jackson, it was lucky it occurred at such a young age, because the chances of a full recovery are much greater.

“They can’t say he’s going to be back to 100 percent in everything, but he’s making really great progress,” Robert said.

Stroke at any age

Ever since Jackson was sent to the hospital, his friends and teachers at McClesky Middle School have rallied together to support him through an initiative called “Action for Jackson,” in which students and faculty hold fundraisers to raise money for Jackson’s treatments.

“The administration has taken this to their hearts,” Robert said.  “They’re really pushing this, and we’re starting to see this support spread to different schools we’ve never heard of.  The middle school and the district have been amazing.”

When Jackson visited his classmates at school on March 21, he was greeted like a celebrity.

“We walked him by school administers and the nurse and then walked him into the lunch room,” Robert said. “It sounded like a rock concert. Kids were screaming; it was really a great experience for him.  It was good for the kids at the school too, and it was good for us.  It felt like a really big victory.”

Robin and Robert have been keeping friends and family up to date on Jackson’s recovery process through a Facebook page called “Prayers for Jackson.”

Not only do they want to keep people up to date, they also want to spread the word about childhood stroke.

While Jackson’s case seems remarkable, strokes can actually happen at any age, occurring in roughly one out of every 4,000 live births as well as 11 per 100,000 children under the age of 18 per year.  Even more astounding, stroke is actually one of the top 10 causes of death in children in the U.S.

“The greater awareness here is that strokes can occur in children,” Wiznitzer said. “ While this was a less common reason, but we still have to recognize that strokes can occur.  We can’t be ‘laissez-faire’ when a kid shows up with something, and think stroke is not what’s happening.”

Robin said the family is blessed the school nurse was able to recognize what was happening.  Had she not known what to do, Jackson’s outcome could have been very different.

“If she hadn’t been there, things could have been completely different,” Robin said.  “The signs of stroke are the signs of stroke – at any age.  It’s important to seek medical attention immediately.  If people hadn’t sprung into action as quickly as they did, he may not have survived.”

To learn more about Jackson or to donate to his cause, visit Prayers for Jackson on Facebook.

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