Dylan could use
a little help

By Diane Prokop
Times Staff Writer

Fourteen-year-old Dylan Szydlowski has been through the ringer the past two years.
Though he’s suffered with daily debilitating migraines almost non-stop for two years, the Mayfair Elementary School student has only recently been diagnosed with having occipital neuralgia.
According to the National Institute of Neurological Disorders and Stroke, occipital neuralgia is a characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head.
The pain typically spreads from the neck upward. The location of the pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head.
Tension headaches and migraines easily account for 95 percent seen by specialists and are rarely due to a tumor or vascular abnormality, according to pediatric neurologist Dr. A. David Rothner, director of the pediatric headache rehabilitation at the Cleveland Clinic. About .04 percent suffer with headaches every day, 24 hours a day, seven days a week. Dylan falls into that group.
According to Dylan’s mother Mary Szydlowski, the condition first presented itself after Dylan had a viral infection in January 2006. It remained constant through that August and was finally resolved with medication, though without a formal diagnosis.
Dylan lost so much time at school that he had to repeat the sixth grade.
After another viral infection in April 2007, the symptoms reappeared, becoming much worse to the point of uncontrollable vomiting. This time around medication didn’t help.
"Before his illness, Dylan was an active basketball player for the Holy Terrors, and now almost never feels well enough to even go out and play. He doesn’t play. He doesn’t laugh. He comes home from school and goes right to bed," his mother said.
Mary Szydlowski has not only had to deal with the day-to-day care of her son, countless doctors — many of whom doubted there was anything really wrong with Dylan — hospitals, countless tests that came up empty, and a family doctor who dropped Dylan and the red tape of HMOs.
"If you don’t like what you hear, keep going," Szydlowski said of her quest to get answers and help for her son.
Dylan had to undergo three painful spinal taps, as well as spinal-pressure monitoring, where a catheter is inserted and left in the spine, all with no answers and no relief.
Despite the plethora of top-notch hospitals in Philadelphia, Dylan had to go to Ohio to find a pediatric-headache specialist. Jefferson Hospital has a renowned program, but it only treats those age 16 and older.
Szydlowski found out about pediatric-headache specialist Rothner by calling a list of headache specialists across the country. One doctor who did his residency in Cleveland told Dylan’s mother, "You need to take your boy to see Dr. David Rothner."
At the Cleveland Clinic’s Children’s Hospital Rehab, the Szydlowskis found Rothner, Dylan’s diagnosis and hope.
The young teen returned from a three-week stay at the Cleveland Clinic on Saturday via an Angel Flight, a non-profit organization comprised of pilots and volunteers who provide free transportation on private aircraft for people who are financially and medically unable to afford commercial transportation to receive medical care.
In Cleveland, Dylan was treated with a team approach — physical therapy, occupational therapy, doctors, social workers, nutrition, on-site schooling, and a pain psychologist.
"It helps the child to develop coping strategies, reduces dependency and can greatly improve the child’s quality of life," Szydlowski said.
While the family hoped Dylan would go home pain free, it’s still a little early to tell. An injection of a steroid, and a long-acting local anesthetic by the chief of anesthesiology at the back of his head has his head feeling numb. It could be three weeks before the numbness wears off and they truly know if the headache is gone.
Stephanie Gill, assistant manager of Rauchut’s Tavern, approached Szydlowski about having a benefit to help the family with expenses associated with Dylan’s care, travel, missed work, etc.
"She went and made all these phone calls. She’s doing everything. I only know her to call the bar and look for my husband," Szydlowski said.
"We’re starting to see a lot of angels lately," she said. ••
Reporter Diane Prokop can be reached at 215-354-3036 or dprokop@phillynews.com

How to help Dylan . . .

The beef ’n’ beer fund-raiser to benefit Dylan will be held on Friday, Feb. 29, from 8 p.m. to midnight, at St. Dominic’s Marian Hall.
Tickets are $30 and can be purchased at Rauchut’s Tavern, 6501 Frankford Ave., 215-333-8244, or Three Monkey’s Café, 9645 James St., 215-637-6665. Must be age 21 or older to enter. Proper ID required.
For more information, call 215-333-6992 or 267-978-4877. ••