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Conway 11-year-old and his family deal with little-known Long QT Syndrome
By CAROL ROLF
Like most Arkansans, the Kilpatrick family never heard of this condition until about four years ago when "we almost lost him," said his mother, Katrina Kilpatrick of Conway. "He fell out in the yard while playing. Our oldest son (Patrick, now 15) and my husband (M.L.) had to perform CPR (cardiopulmonary resuscitation) on him and we had to rush him by ambulance to Conway Regional Medical Center."
After treatment at CRMC, Ryan was referred to Arkansas Children's Hospital in Little Rock where he was to undergo a battery of tests. He was released from that hospital with no concrete diagnosis.
Five weeks later, while swimming at Briarwood Swimming Pool, it happened again. "He was swimming and playing hard," Kilpatrick recalled. "I was there with him. I had looked away and the next thing I knew, he was floating face down in the pool." Kilpatrick and Tom Clark, owner of the pool, performed CPR and Ryan was once again taken by ambulance to CRMC. From there he was transferred by ambulance to Children's Hospital, where he was to spend several days in the intensive care unit and undergo another battery of tests, including blood work, an electrocardiogram (ECG) and a heart catheterization
After several weeks and several more visits to ACH, the diagnosis was made -- Long QT Syndrome, or LQTS for short. Ryan now takes a beta blocker medication to regulate his heart rate. When, or if, the medication ceases to work, a pacemaker would be the next method of treatment, according to his mother.
According to the Sudden Arrhythmia Death Syndrome (SADS) Foundation in Salt Lake City, LQTS is an abnormality of the heart's electrical system due to defects in heart muscle cell structures called ion channels. These electrical defects can make the affected persons vulnerable to serious and life-threatening heart rhythm disturbances which can lead to sudden loss of consciousness and may cause cardiac death. The "QT" refers to a measured interval of each heartbeat on the ECG.
The syndrome may be inherited or acquired. Symptoms often include unexplained fainting episodes or dizziness. However, some people show no warning symptoms before they suffer sudden cardiac death.
"Basically, one of his heartbeats is a little longer than it should be," Mrs. Kilpatrick said. "If Ryan gets startled or really tired, he passes out."
Ryan's diagnosis was made by Dr. Christopher Erickson, an electrophysiologist in the pediatric cardiology section at Arkansas Children's Hospital. Connie Jones, a specialty arrhythmia nurse in the section, further explains Long QT Syndrome.
"There is a period at the end of each heartbeat or the recovery of each heartbeat which is a 'vulnerable period'," Ms. Jones said. "In LQTS, that 'vulnerable period' is longer than normal. That period can be so extended that the next heartbeat falls into it and causes the heart to go very fast and then stop."
She explained the only way to diagnose this condition is with an ECG, patient history and family history. Other tests may also help confirm the diagnosis. She added Ryan is treated with a medication (Inderal) which is geared to regulate his heartbeat. "He's done very well on the medication," Ms. Jones said.
Ms. Jones added that Long QT Syndrome is "very rare. It is so silent -- until there is a devastation," she said. "In the database that I keep, which is not absolutely complete, we have 10 pediatric patients within the state that have been diagnosed with Long QT Syndrome. And there are probably some that have not been detected." She noted it does occur in the adult population as well.
"We try to enter all our patients' data into a national LQTS registry," Ms. Jones added.
According to SADS, LQTS is usually inherited. Mrs. Kilpatrick said her "real father," who died in 1949, evidently had a history of "passing out" and she believes he suffered from LQTS. She added both she and her husband as well as their other son have been tested and none of them has LQTS.
Ryan continues to be followed by Dr. Erickson on an annual basis. He continues his daily activities as a fourth-grade student at Ellen Smith Elementary School, where teachers and staff are all aware of his condition. "They've even had more people become certified in CPR, and have a special code name to announce over the intercom if something should happen while he's at school," Mrs. Kilpatrick said. "They've been really supportive and very cooperative."
But the last four years have not been easy on the family. "At times, it's been like a living hell," Mrs. Kilpatrick said. "Sometimes, he feels really bad, especially when he's very tired. And we worry about him all the time, wondering if today might be the last time we see him. Sometimes you can let go of it, and sometimes you can't." She added Ryan also has a growth hormone problem and has Attention Deficit Disorder.
More information on LQTS is available from the SADS Foundation, 508 E. South Temple, Suite 20, Salt Lake City, Utah 84102, 1-800-STOP SAD or 801-531-0937. The organization also has a website on the Internet.
Copyright 1997 The Log Cabin Democrat
Log Cabin Staff Writer
Ryan Kilpatrick likes to swim, run and play outdoors, just like most 11-year-olds. But the trouble is, he has to curtail those activities because of a life-threatening condition called Long QT Syndrome.
