Washington child treated in S.A. for rare condition

SAN ANTONIO — When Casen Buswell was a baby, his parents feared they could hurt him with just a touch.

Casen was born with a rare genetic condition that causes abnormal blood vessels, which resemble flat varicose veins, to form in his skin. Over time, they grow larger and become painful. As they fill with blood, they can even become disabling.

“Three or four nights ago, we were sitting on the couch watching a movie, and he looked up at me and said, 'My owies, they hurt all the time,'” said Jenna Buswell, 29, Casen's mother.

Casen, now 21/2, lives in Puyallup, Washington, near Tacoma. But Jenna and Casen travel to San Antonio for treatment for his condition, called glomuvenous malformations plaque type, at Methodist Children's Hospital. Dr. John C. Browning, a pediatric dermatologist, is the only doctor in the country the family has found to treat Casen.

“It's an ongoing process,” said Browning, a doctor with Texas Dermatology and Laser Specialists and the medical director for the vascular anomalies clinic at Methodist Children's Hospital.

“We hope to get to the point where we've treated all the vessels and no new ones are recurring. He probably will need to undergo occasional laser treatments throughout childhood. My hope would be we're able to treat the vast majority of them before he's an adult.”

When Casen was born in February 2012, doctors weren't sure what to make of the purple vessels that covered his chest. After weeks of fruitless doctor's appointments and misdiagnoses, the family met with a geneticist who sent Casen's blood to doctors in Belgium who treat the condition.

The doctors diagnosed Casen's condition when he was about four months old, but the family couldn't find anyone in the United States to help him, Jenna said. One physician said his vessels were too numerous and dilated to treat, Jenna said.

The family went to Belgium to meet with the doctors, and Jenna debated moving there with Casen for treatment, while her husband CJ and Casen's older sister stayed back in Washington.

“Nobody knew what to do with us,” Jenna said. “There were only 12 or 14 people who had been diagnosed with it.”

he Buswells worried that Casen was experiencing debilitating pain. Trauma can cause the vessels to burst and bleed, so they had protective vests, knee pads and arm bands made for him.

“His vessels were so dilated and the blood was pooling in those vessels so tremendously that it looked like if you touched it you could pop it,” Jenna said. “It was so intense. We were so afraid of him falling and cutting and bleeding out because there was so much blood pooling in those vessels.”

After stories about Casen appeared on TV, in newspapers and online, Jenna received a phone call in May 2013 from a woman whose daughter has the same condition. The girl had received laser treatments from Browning at Methodist Children's Hospital, which had helped diminish the abnormal vessels.

The Buswells flew to San Antonio as soon as they could.

“It was a lot of tears,” Jenna said. “I was hopeful, but I was scared. Here we've been to five hospitals. We've been halfway around the world to find answers. What if he looked at him and said, 'No, we can't treat him?'”

Instead, Browning treated Casen that very day.

Methodist Children's Hospital is the only hospital in South Texas that owns the laser to treat Casen's condition, Browning said. He uses a Cynosure Cynergy dual-wavelength laser, which shoots light through the skin to target the abnormal vessels.

“It's sort of like a smart bomb,” Browning said. The laser heats the vessel to a high temperature so it scars over, stopping the flow of blood. The body eventually absorbs the scar tissue. In some cases, blood might push the vessel open again, requiring more treatments.

Casen's family could see a difference right away.

“After the first treatment, we went to meet with our Belgian doctors again, and immediately the doctor said, 'He knows what he's doing. Casen looks great,'” Jenna said. “After the second treatment, his main vessel in the middle of his chest with all the blood pooling, it was pretty much gone.”

The treatment usually takes less than an hour. Then Jenna and Casen return to their hotel, where Casen sleeps in her arms until they fly home.

Casen underwent seven treatments in 2013. He began a new series of treatments on Aug. 8 and likely will return to San Antonio every month for the rest of the year. Browning has treated the severe vessels on his chest, which were the most prominent, and now is targeting smaller vessels on other parts of his body.

Before his August treatment, Casen snuggled with his mom on a bed at Methodist Children's Hospital, playing a game about tractors on an iPad. Jenna teared up when she left him in the operating room, and again when he was waking up from the anesthesia, which caused his whole body to shudder convulsively.

Besides the emotional toll of the treatments, the Buswells struggle to deal with the financial costs.

Jenna, a special education teacher, and CJ, 35, who works in a construction office, have held multiple fundraisers to help with their travel to Belgium, the genetic testing and Casen's treatments. While insurance helps, each treatment in San Antonio costs the family roughly $3,000-$4,000, Jenna said.

And while she worries that the hospital visits are rough on her toddler, he bears them stoically.

“He's very tough,” Jenna said. “He's so happy. He's the most resilient little boy ever.”

jbelasco@express-news.net

Financial contributions to Casen's medical fund can be made atwww.youcaring.com/HOPEforCASEN.

Source: http://www.expressnews.com/lifestyle/health-family/article/Washington-kid-treated-in-S-A-for-rare-condition-5691522.php?t=f7d44a4a1e&cmpid=email-premium