But there's no doubt about it — more kids just like Sarah are in therapy than ever before. And it's sanctioned (and paid for) by the government.
"People think, 'Well, they'll just learn to eat.' You would be amazed at how fast kids who have feeding problems lose that ability," she says. "It doesn't automatically get better at all. You really have to start early with feeding issues. No question about it."
Sarah began to improve. Her speech was getting better, but her eating was still irregular.
"[She] tends to panic easily and will reject a food rather than sitting down and figuring out how to work with the food," speech therapist Robin Rudin wrote in June.
Her projectile vomiting had stopped, and Rudin thought that might be linked to her failure to gain weight.
"Mom has noted that [the child's] decline in appetite seems tied into her decreased reflux. It appears possible that [the child] has learned that her stomach feels better if she doesn't eat. Now that she eats very little she does not have trouble with vomiting," Rudin wrote in September.
This theory was never fully explored. Instead, worried that his patient gained only one pound between December 2006 and September 2007, the gastroenterologist suggested Sarah might need a feeding tube. The procedure places a PEG tube in the patient's stomach, allowing liquefied food to go directly into the body. The surgery can be performed two ways — through the mouth, using an endoscope to guide the tube to the stomach wall, or by surgical insertion of the tube through the skin.
Dunlavy was horrified.
"I didn't want the PEG in my child," she says. "I wanted to try everything else, I wanted [a more intense] feeding therapy program."
In an effort to avoid the tube, Sarah underwent minor surgery in early September that clipped the skin underneath her tongue. Before the surgery, it extended farther than normal, restricting her tongue's motion. The clip was performed by Dr. John Raines, who noted he didn't think it would help her gain weight and suggested Dunlavy talk to a friend of his, gastroenterologist Mitchell Shub at Phoenix Children's Hospital.
Dunlavy visited Shub on September 26 to talk about the feeding tube. She was still hoping to avoid it, but Shub thought Sarah was a good candidate for the PEG.
In his report, Shub writes, "I believe that placement of a percutaneous gastronomy feeding tube would be helpful in maintaining good nutritional support."
He spent 75 minutes urging Dunlavy to agree and suggested the child could be evaluated as an inpatient first. She remained unconvinced but agreed that an evaluation might be a good idea.
The report was sent to Sarah's pediatrician, Kevin Berger.
The family was new to Berger's office. Dunlavy had switched primary-care physicians in August because she'd heard he had a good reputation working with DDD clients. She was hoping he'd be able to guide her through Sarah's difficulties and help her get things like Pediasure — one of the child's main sources of nutrition — paid for through her insurance. They met for the one and only time at a new patient evaluation.
Dunlavy liked Berger. She describes it as a basic appointment. Sarah sang her ABCs and pointed out colors on the wall.
"He didn't give me any impression he thought there was something wrong," Dunlavy says. She briefed him on her daughter's medical history and he noticed Sarah had pinkeye. (Dunlavy hadn't see it because pinkeye can be difficult to detect.) He prescribed eye drops and the appointment was over in 20 minutes.
Dunlavy had no further contact with his office until October 10, when two of her daughter's therapists at Scottsdale Fiesta Pediatric Therapy noticed something unusual. Several times during the session, Sarah stopped what she was doing, stuck her arms out, and shook for about 10 seconds.
They reported what they called "shuddering spells" to Dunlavy, who wasn't in the room during the session, and suggested she have her daughter checked by a neurologist.
Dunlavy called Berger's office and left a message for him. Later that day she was told to bring Sarah to Phoenix Children's Hospital, where she would be evaluated for both the shuddering spells and also her feeding issues, as Shub had suggested at their consultation.
She followed their instructions, but she had no idea what was going on behind the scenes. Between her first phone call and Sarah's arrival at the hospital, Berger called Phoenix Children's and made a very serious allegation.
He wanted the hospital to evaluate Dunlavy for Munchausen Syndrome by Proxy, though the note made in Sarah's medical records does not say why.