Family faces challenges of afflicted teen
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.
Family faces challenges of afflicted teen
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.
Coma causes drastic delays
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 got 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.”
The little girl couldn’t sit up. She had no muscle tone. She couldn’t eat. She couldn’t speak.
“She went back to being an infant, or beyond,” her mother said. “Even an infant knows how to [swallow.]”
Miller, who has worked for the Visiting Nurses Association, which provides homecare to people with physical or mental impairments, requested that her daughter receive homecare after she was released from the hospital. The nurses showed Miller how to take out Amy’s feeding tube and how to reinsert it when necessary, as well as how to clean it. At first, Amy had nurses, a physical therapist and a speech therapist.
“The speech therapist was to help her learn to swallow,” Miller said. “It’s been a long journey for our family.”
At first, Amy couldn’t lift her head. She couldn’t track her eyes to follow someone moving across the room.
Making strides in motor skills
“She started rewarding us. After a few months, her eyes started to follow us. She started being able to swallow baby food,” Miller said. “You think it’s awesome when your baby learns something the first time around. But if she loses it, and gets it back, you are in seventh heaven.”
Through the years, Amy was able to gain back many of her motor skills. She knows about 10 words that she uses with her family, including how to say “mama,” “dada” and others. Amy’s mother describes her as very expressive and said it is amazing what she has learned from her daughter.
When Amy is tested annually by a pediatric neurologist, she tests at the ability of a 1 ½-year-old to a 4-year-old, depending on the tasks.
“She is not cognitive of her safety,” Miller said. “When we go out and about, why we have the wheelchair is so that it confines her to one place. She is totally 100 percent safe.”
On a typical school day, Amy gets up at 7:30 a.m. The school bus picks her up and takes her to Rancho San Justo. There she is enrolled in special education – eighth grade, where her mother says they have many different programs for her. After school, Amy spends her time playing in the yard of her home or watching cartoons. Disney’s Playhouse has some of her favorite shows. Every other weekend Amy and her older sister Kelly visit their father, who lives in Fresno.
Amy is still on four types of anti-seizure medication. She now goes three to four months without seizures, and has occasionally gone as long as seven months without an incident. The types of seizures she has now tonic-clonic seizures, formerly called grand mal seizures, cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness, according to the National Institutes of Health. Her doctors are cautious anytime she has a seizure because they want to prevent the start of a seizure cycle.
Through the years, Miller said there are three things that have helped her through the challenges with Amy – faith, friendship and family. She and her ex-husband remain close, and he is supportive with Amy’s needs. Miller also said she has seen an outpouring of support from the community and her church, Hollister Christian Fellowship.
“Those three things really helped me get through the day to day,” she said. “It’s the inner strength God gives us all – I really draw on that. If you really think about what you are doing, no one could do it. But we all have that strength inside.”
