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Show us a person who likes going to the dentist and having sharp objects or injections in his or her mouth and we'll show you a pretty kinky human being. It is hard even to be rational about tooth cleanings and cavity fillings, though you may have been through them many times: Still, you grip the arms of the chair.
So, imagine a child with a disability, like autism, or Down Syndrome, in the same situation.
Nathan Dodson, 14, of Magnet Cove is autistic and has "extreme anxiety," his mother, Teresa Dodson, says. He can be difficult at times and he does not like going to the dentist, though he tolerates getting his teeth cleaned. His anxiety can trigger "a lot of behavior issues," his mother says. He may be uncooperative, even flee, in situations like a dentist's office.
When Nathan was younger, his mother took him to the dental clinic at Arkansas Children's Hospital, but if he needed a cavity filled, it could take months for an appointment. Dodson began taking Nathan to dentists in Hot Springs, where Dr. Stephanie Baldwin could fill his cavities under anesthesia at Healthpark Hospital.
But Feb. 20, when Dodson took Nathan in, she discovered her dentist had changed hospital affiliations, and Saline Memorial in Benton would not agree to put Nathan under.
So on March 3, Teresa Dodson took her son to Tipton Pediatric Dentistry in Hot Springs, which works with Baptist Health in Little Rock when a surgical suite and anesthesiologists are needed. But, Dodson said, the clinic told her that anesthesiologists at Baptist declined to take Nathan as a patient because he was "too big."
Asked about that, Mark Lowman, a spokesman for Baptist Health, said it made no sense that the hospital would turn someone down for their size. He said it was possible that the pediatric dentists had declined to see the boy because he was too old. Dodson, however, insists she was "specifically told" by the dentist's office that "they contacted the anesthesia department at Baptist and they told her they did not have the staffing to provide treatment to a child Nathan's size."
Whatever the truth was, by now, the pain was bothering Nathan so much that he was asking his mother, "Can we go to the dentist today?"
On March 24, Dodson took Nathan to the Arkansas Children's Hospital dental clinic for children with developmental and medical problems. She was told the hospital could not book her son until November or December and that she should give him ibuprofen.
But April 23, Dodson got a call. Her son can be seen May 6.
Coincidentally it was just after this reporter called Children's to talk about the apparently overworked dental clinic.
Children's, however, says it was the addition of two new dentists that freed up the schedule. Now, according to Dr. Stephen Beetstra, director of dental services at Children's, the clinic is working on moving up appointments daily.
Beetstra had been working alone for a year after clinic founder Dr. Jim Koonce had to take medical leave. (Koonce died this year.) Now, however, two full-time pediatric dentists, a fulltime and part-time general dentist (who work with the Wakefield Project at Wakefield Elementary), an orthodontist and other specialists, such as a periodontist who sees patients once a week, now work with the clinic.
"Recently Children's has made a huge effort to provide access to children with disabilities," Beetstra said. Told about Nathan Dodson's case, Beetstra said, "Yes, there have been long delays" in the past. But that should change now.
The clinic, which accepts patients by referral only, treats patients who are "extremely medically compromised or who normally can't access care in other ways," Beetstra, a general dentist, said.
Ten years ago, Beetstra said, one out of 300 children was diagnosed with autism. That number has risen to one out of 68 children. "So the demand for services is going up and up, and in response Children's has put a lot of resources to improve access."
Unless you have a child with disabilities, you may not know what difficulties they face getting dental care. A child with a seizure disorder, for example, may require a periodontist to surgically remove gingival overgrowth that is caused by seizure meds. Children with hemophilia need to be infused with clotting factors before going to the dentist; fortunately, Beetstra said, the dental clinic is just one floor above the hematology clinic at Children's. A child with high blood pressure caused by his kidney disease can be at risk of heart attack or stroke in a traditional dental office. Children with cardiac conditions need specialized care; children with cleft palates need years of surgical care.
Pediatric dentist Koonce took the initiative to create Children's clinic, Beetstra said, and provide care "for this very medically complex and underserved population." For the past year, Beetstra has been handling the entire load, which he estimated at around 130 to 140 patients a week. Where once the clinic could provide only eight or nine surgeries a week, that number is now up to 15.
As for children with autism, Beetstra said, the clinic's goal is to desensitize them, get them used to the clinical setting so they will not need to go under for treatment. "If we get them at a young age we can get them used to coming to a dental clinic," he said.
Children's treats both children and adults with Down Syndrome. Dana McLain, who formerly was the attorney for the Disability Rights Association and whose daughter has Down Syndrome, is well versed in the problems children with disabilities face in seeing not just the dentist, but all doctors. Her child has a heart condition as well, "which dentists tend to not want to deal with."
"As an attorney, I've gotten many phone calls" on the issue of medical care for the disabled, she said. The Americans with Disabilities Act requires that doctors treat the disabled as long as doing so doesn't "fundamentally" alter their practice, McLain said.
"The thing is, there are laws, but you don't want your child treated by someone who is not comfortable ... You want them to be comfortable and confident."
There is another problem, and that is age. Medicaid does not cover dental services for people 21 and over. But if you have Down Syndrome, you may have soft teeth and other conditions needing treatment.
"It is more challenging when there is no provider," McLain said. "Unfortunately, it's not just limited to dental work." She would like her child to have access to a psychologist who could help her find ways to deal with her agoraphobia. She did have a terrific family pediatrician, Dr. David Weed, in Benton. "I felt like as a parent he went above and beyond."
McLain was familiar with the huge demand at Children's, where her daughter was also treated in the genetics clinic by Dr. Kent McKelvey. "If they could work 24 hours a day it wouldn't be enough," she said, because Children's handles things no one else does.