Creating Solutions (pdf)

Lauren Enos, age 13, has the developmental disability known as autism. While this is generally thought of as a communication disorder, there are sensory issues as well. In fact, many of the characteristic behaviors associated with autism in an individual are attempts to manage an overload of sensory information.

For Lauren, touch can be very offensive and cause her a great deal of anxiety. This condition is problematic because, in addition to autism, Lauren has a seizure disorder that requires periodic blood work. "We were doing very well for a while," said Judy Enos, Lauren's mother. "She would actually participate in the blood draws on her own will." Then there was one bad experience: a nurse, who was trying to draw blood, couldn't find a vein. From that moment her parents could not get Lauren to go give blood. They tried having a home health nurse come in and give Lauren a mild sedative before drawing her blood, but that, they found, actually increased Lauren's anxiety. They tried to explain to Lauren that the procedure would take only a short time, but she couldn't grasp the concept, and became increasingly agitated. There was no way to do the procedure without full restraint. "And that," said Judy, "wasn't going to help anybody."

It was on the recommendation of one of Lauren's therapists that they found the Painfree Center at CHaD in the spring of 2004. "I have to say, from the very first time, they were wonderful," Judy said. "Lauren was very anxious about even being in that environment, and they worked with her to use the least amount of medication possible to achieve the goal." The team at CHaD initially had to give Lauren an oral sedative just to put the sedation mask on her. But the second time, only a month or two later, they were able to slip the mask on without the oral sedative, which meant that Lauren was able to get up right away and had no nausea, making the procedure not only more effective, but also more efficient.

Joe Cravero, Associate Professor of Anesthesiology and Pediatrics, and Medical Director of CHaD PainFree, was a pediatrician before he was an anesthesiologist. He recalls the issues and inefficiencies he faced trying to sedate children. "At times we were giving sedatives that had halflives and sedation effectiveness for three hours to get a kid sedated for a three-minute procedure. What we were providing didn't really meet the requirements of what we were trying to get done. As an anesthesiologist, I have a lot of sedatives that will work for just three to four minutes."

Kristin King, a Child Life Specialist, has worked with the Enoses from their first visit. King gave them a sedation mask to take home, so they could role play with Lauren and talk about the mask. "It's not acute pain for her," Judy asserts, "but it's just so much anxiety. She can't handle the procedures. They truly understand the anxiety that this causes these kids. As a result, we're able to do diagnostic tests that I don't think we'd be able to do otherwise."

Each time Lauren visits the clinic she gets a little more confident, and Judy hopes that over time it may not be necessary to fully sedate her. "They're very accommodating and willing to work with us to teach her to be able to tolerate it more without full sedation every time. We're not there, but down the road that's the objective, which is nice."

The PainFree Clinic's overall philosophy, according to Cravero, has been that while parents and families generally do come to terms with whatever illness or condition is affecting their child, people never get used to watching their kid stuck with needles and crying.

"As far as I'm aware," Judy said, "there isn't a facility like the PainFree Clinic anywhere in the Boston area. For me to have achieved the same results would have required a lot of leg work on my part. We just really lucked out finding this place."