Thursday, November 13, 2014

FOR MOEBIUS MOMS AND DADS: SOME DENTISTS WORK TO IMPROVE CARE FOR KIDS WITH SPECIAL NEEDS

You know, going to the dentist can be difficult sometimes for kids with Moebius Syndrome.  As many of you parents know, Moebius kids have have unique issues with their teeth, and this can lead to various dental problems.  It can mean a number of, not to mention long, trips to the dentist.  And that too can be hard, given that those with Moebius can have oral issues in general.  I know that I have always had a very easily-triggered gag reflex; thus it can be hard when someone (like a dentist!) is putting something strange into my mouth. 

But the good news is, there are dentists out there who pay attention to these kinds of special needs, and who work to make things better.  Does your child's dentist know about some of these things?  Maybe you want to make him or her aware.  Read on:

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Amy Luedemann-Lazar originally disliked working with children with autism — with routine dental procedures becoming “backbreaking” work, given the children’s behavioral and communication difficulties.

It wasn’t a single turning point, but a series of smaller events that led the 42-year-old pediatric dentist to become one of the leading providers for children with special needs in the Houston area. Among the reasons: She watched a friend raise a daughter with autism, an influx of patients with special needs turned up at her office and she was introduced to a program designed to treat patients on the spectrum without restraint or sedation, typical practices in many dental offices.

Children on the spectrum can struggle with communication, adaptation and sensory processing, making dental treatment difficult and even sometimes dangerous. As a result, parents of this growing population — 1 in 68 U.S. children are diagnosed with autism spectrum disorder — can be left choosing between having their child immobilized or sedated or even just avoiding needed dental care.

At Kidstown Dental in Katy, Texas, Luedemann-Lazar begins slowly with patients who have special needs — starting by having them simply sit in the dentist’s chair for the count of 10 and working up to a procedure through incremental visits.

The efforts and techniques are much appreciated by parents of children with autism in the west Houston suburb, where about 1 in 56 students have a spectrum diagnosis, according to Katy Independent School District statistics.

“You can’t just go to any dentist — any pediatric dentist — and expect them to know how to work with your child,” said parent Cynthia Reece, president of the nonprofit Katy Autism Support group. Reece’s 15-year-old son who has autism sees “Dr. Amy.” “She’s the expert, the go-to person in our community.”

Luedemann-Lazar’s repetitive tasking approach — developed from a treatment technique called the D-Termined program — is a form of behavior guidance, and is part of a growing movement in pediatric dentistry aimed at tailoring care for patients with autism.

Children on the spectrum “learn by applied behavior analysis, where things are broken down into small steps,” David Tesini, a Massachusetts-based pediatric dentist who developed the D-Termined program about a decade ago. “Everything should be broken down into small steps.”

Building up to dentist

The D-Termined program — created for children with autism but applicable to those with a wide range of special needs — is designed accordingly, with patients repeating and slowly building on each of the steps involved in seeing the dentist over the course of multiple visits. The program was successful with 68 percent of patients studied in a yet-to-be-published study out of the Tufts University School of Dental Medicine, Tesini said, meaning these patients were treated without restraint, sedatives or anesthesia.

Although the D-Termined program is relatively new — Tesini released the first instructional video nine years ago — a similar repetitive tasking technique is taught at most pediatric residency programs, including the University of Texas School of Dentistry at Houston, said Gary Badger, chairman of the school’s pediatric dentistry department.

“There’s additional attention to this simply because there are greater numbers than there were before,” he said.

‘The child whisperer’

The approach has allowed Luedemann-Lazar to earn parents’ trust for her commitment to helping children with special needs learn the skills to be treated as mainstream patients are. “She’s gone the extra mile,” Reece said. “She’s like the child whisperer.”

Born and raised in Houston, Luedemann-Lazar never expected to be a pediatric dentist, much less one known for treating children with special needs, she said.

“I wasn’t going to be a pediatric dentist because I knew I loved dentistry but I loved kids too much,” Luedemann-Lazar said, explaining that she had seen too many unhappy, terrified children in the dental offices where she had worked.

However, she took an interest in children with autism after spending time with a friend whose older daughter has autism, which she said opened her eyes “to autism and the struggles of it.”

Waiting in the wings

After completing her residency and returning to the Houston area, Luedemann-Lazar began treating most of the patients with autism where she worked. When it came time to open her own practice, where she treats patients with and without special needs, Luedemann-Lazar had developed enough of a following that parents of children on the spectrum were already waiting in the wings for an appointment.

“The first seven out of 10 kids were autistic children that had been waiting for my practice to open,” Luedemann-Lazar said. “I was super scared.”

Exciting achievement

Two years after Kidstown Dental opened its doors, Luedemann-Lazar is seeing patients like Seth Skaggs, a 6-year-old with Down syndrome who had to be sedated the first time he got his teeth cleaned. Like children with autism, Seth has trouble adapting to new things; dentistry is no exception.

The morning of his fourth appointment with Luedemann-Lazar, who had yet to be able to complete his cleaning, Seth was so excited about his trip to the dentist that he practiced dentistry on his little brother, his mom Emily Skaggs said. “Seth put the gloves on and he practiced in Kyle’s mouth,” Skaggs said.

In Luedemann-Lazar’s office, the dental assistant asked Seth to sit in the chair to the count of 10, then to do so with the chair reclined, and so on until he was, for the first time, able to sit through a cleaning, fully alert. There were prizes at the end of each step, and the Disney movie “Frozen” played on the TV above Seth’s head.

“I’m really surprised that he did it,” Skaggs said when Seth hopped off the chair, his teeth cleaned. “I never thought we’d get here.”

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