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Bernardsville Child Benefits from Matheny's Team Approach

Estela Perez with Nicholas in his Matheny
School classroom

Estela Perez of Bernardsville recalls the spring day in 2007 when she first came to Matheny with her four-year-old son, Nicholas  “We visited with our social worker,” she says, “and I loved the way they treated him.”  At the time,  Nicholas, who has Lennox-Gastaut syndrome, could not stand up, and his body was floppy.  Today, says Perez:  “He can stand up.  His legs are stronger.  He’s very alert.  He’s saying some words.  And he’s eating well.”

Lennox-Gastaut syndrome is a severe form of epilepsy with seizures beginning before four years of age.  Nicholas is a day student in the Matheny School, and he has benefited from Matheny’s team approach.  Therapists are integrated into the classroom, and, because Matheny is also a hospital, he has received care from physicians in its Center of Medicine and Dentistry and evaluations and treatment in its Seating and Mobility Clinic.

For example, Cindy LaBar, MSPT, acting director of physical therapy, has been working with him on, “standing and stepping, sitting and posture and trunk strengthening.”  Occupational therapist Tara Hopko, COTA, is concentrating on, “trying to get him to reach and explore his environment with his hands.  He used to not like to be touched or use his hands.”  Speech-language pathologist Sara Pisarchik, MS, CCC-SLP, points out that Nicholas’ family physicians switched him to a ketogenic [high fat] diet, which greatly reduced the number of seizures he has.  As a result, she adds, “he’s much more cheerful, and he is using switches to communicate on a basic level, something he hadn’t done before.”

Before visiting Matheny’s Seating and Mobility Clinic, Nicholas had been using a stroller rather than a wheelchair.  “We were concerned with his growth and development,” says OT Maura Mirecki, BS,OTR, ATP.  “So, we were able to get a product that was a hybrid between a stroller and wheelchair.  It has a high-low adjustment, so, for example, he can use the high adjustment when he’s eating at the dining room table with the rest of the family.  But it can be adjusted lower to function like a more conventional wheelchair.  We’re also working with the family on a bath lift so his mother can transfer him into the bathtub without having to lift him.”

At Matheny’s Center of Medicine and Dentistry, which provides medical, dental and therapy care to both inpatients and outpatients, Sara Osman, MD, says Nicholas had been suffering from severe contracture of the feet, which prevented him from being able to stand.  Surgery was performed by Matheny pediatric orthopedic surgeon J. Andrew Bowe, MD, to lengthen his heel cord.  Now, says Dr. Osman, “we’re getting ready to put him on a tricycle to increase his mobility.  And we’re going to outfit him with a body jacket to improve his posture because he has scoliosis.”

“The work here has helped him a lot,” says Perez, but her experience with Nicholas should serve as a lesson to other parents who believe their infant or toddler may have a developmental disability or delay.  “When Nicholas was about six months old,” she recalls,  “I told the pediatrician I was worried about him because he wasn’t strong enough.  The pediatrician said everything was normal.  When he was one year old, he said the same thing, so I changed pediatricians.  The new pediatrician said, ‘Why did you bring the baby in so late?  He should be in early intervention.’”