Amy Miller, a 13-year-old Rancho San Justo student, has a smile
for everyone she sees. She is full of energy, and her mother Karen
Miller describes her as being a little like Tigger, the bouncing
character from
”
Winnie-the-pooh.
”
Amy Miller, a 13-year-old Rancho San Justo student, has a smile for everyone she sees. She is full of energy, and her mother Karen Miller describes her as being a little like Tigger, the bouncing character from “Winnie-the-pooh.”
Though she is a teenager, Amy needs someone to watch her constantly. She needs help dressing, bathing, eating and for other day-to-day tasks due to cognitive impairments she suffered as a toddler. She can walk, and even likes to run, but Amy is often confined to a wheelchair for her own safety when she is out with her family or when she is picked up by the school bus in the morning. Amy also has a special car seat that keeps her safe when traveling with her family.
Amy’s medical equipment expenses are covered by California Children’s Services, a program run by the state Department of Health Services, for children with some medical issues, including recurrent seizures, like Amy experiences. But in recent months Miller said it has gotten harder to get authorization to repair Amy’s equipment. Before, the staff members at the Medical Therapy Unit in San Benito, which provides Amy’s physical and occupational therapy, were able to quickly get authorization to fix the equipment or replace it.
“It’s hard to get across hurdles when you know your daughter needs something and someone is telling you ‘no,'” Miller said.
Now, Miller has been told she has to make an appointment to see a medical specialist in Oakland who will assess Amy’s needs before approving the repairs. But before Miller can take her daughter to see the doctor, that appointment has to be approved by CCS. She is waiting for approval for the appointment, but she is concerned about getting some necessary repairs done on Amy’s wheelchair and has been considering paying for the repairs herself. Staff at the Medical Therapy Unit and CCS would not discuss Amy’s treatment or equipment needs before deadline because they require a confidentiality waiver to be signed to discuss any patient.
“My biggest concern is her safety,” Miller said. “If the chair is not safe on the bus, they won’t transport her.”
Miller said Amy can be hard on her equipment, since she often bounces around in her chair and pushes against the straps of her car seat.
“Up until now it’s been easy, but the last four months they started putting up a delay,” Miller said.
Waiting for authorization for repairs is just the latest in a long line of challenges the Millers have faced.
It started when Amy was a baby of five months. She had what doctors diagnosed as a febrile seizure, caused by a fever. The seizures occur in 1 in 25 infants between the ages of 6 months and 5 years, and most do not occur again or cause any cognitive impairment, according to the National Institutes of Health.
“Sadly, she became the one percent that do it again,” Karen Miller said on a recent morning.
From 5 months to just before her fourth birthday, Amy had multiple seizures, including what doctors called seizure breakthroughs, which include a cycle of seizures over a few days span. Though she was heavily medicated to control her seizures, Amy had developed physically and cognitively up until age 4. But even with the medication, she would only go six to seven weeks without having a seizure. When the seizures go to their worst, Amy would be admitted into Santa Clara Valley Medical for an aggressive treatment.
Just before Amy’s fourth birthday, she had a seizure and was taken to the hospital. There, she continued to have seizures, including one that lasted nearly an hour. To stop it, the doctors induced a coma. Amy was in it for 10 days.
“We just felt that once she woke up, everything would be back to normal in 10 days,” Miller said. “But it totally appeared as though something really dramatic had changed.”
See the full story in the Pinnacle.
