On an October afternoon in West Boise, 4-year-old Walter Ririe wore a big smile. He locked eyes on the guests in the house as he crawled on the lounge sofa in the living room. His long, dark bangs danced around on his forehead as he moved. He often giggles unrestrained — a child who’s just happy all the time, as his mother described him.
In July 2018, Walter was diagnosed with Angelman syndrome, a genetic disorder that causes developmental disabilities and affects the nervous system. The following spring, he was diagnosed with epilepsy. Medical experts have said such diagnoses benefit from regularly seeing a specialist — a child neurologist, who can track his medications and progress.
Walter has no specialized pediatrician in Idaho. Since August, his mother, Mikayla Ririe, has been barred from seeking specialized care for Walter at St. Luke’s, the only hospital in the Treasure Valley with pediatric neurologists.
The stories differ on what prompted Ririe’s ban from St. Luke’s. Health system officials said she showed “repeated poor behavior toward staff” and missed appointments. Ririe said a St. Luke’s physician refused to listen to her when Walter needed a new MRI and reacted negatively to prescribed medication.
But medical records, confirmed by St. Luke’s officials and Ririe, corroborated one thing: Ririe and Walter’s physician, Dr. Lindsey Foy, butted heads on Walter’s care.
Walter was ultimately left with few options for doctors. Ririe said she was scared.
“It made me real mad that this happened because somebody didn’t like me,” Ririe told the Idaho Statesman.
Ririe said that since then, she’s tried calling every other neurologist she can find in Idaho. Not one was available to take a new patient like Walter.
Idaho short of pediatricians, specialists
Idaho ranks the worst of 50 states in the number of general pediatricians, according to the American Board of Pediatrics. The average is 90 pediatricians per 100,000 children. In Idaho, the average is 45.
Finding a pediatric neurologist presents even more of a challenge. Ririe, a single mom, said she has called the only other neurologists she could find in the state. No one is taking new patients. Adult neurologists don’t treat children, especially as young as Walter. The only other pediatric neurologist she could find was in Idaho Falls, a 3-hour drive. That doctor was fully booked.
Ririe ultimately landed on using Telehealth for Walter to see a specialist at Seattle Children’s Hospital — about 500 miles away, or an 8-hour drive.
She’s still allowed to seek help through the St. Luke’s emergency room. But without a specialized physician who’s local, Ririe said she worries for Walter’s care as she awaits his next epileptic seizure, or the next time he incurs a negative reaction to his medication. Walter’s records at St. Luke’s showed numerous visits to the Emergency Department, during which the doctor would consult with the St. Luke’s neurologist.
If an ER doctor needed to consult Seattle Children’s Hospital, she said she wasn’t sure who would be available or whether the on-call health care provider would be able to make informed decisions about Walter’s medical care.
“You may get a triage nurse on the line who’s never seen or heard of my son,” Ririe said.
Her St. Luke’s experience prompted her to file a complaint in July with the Board of Medicine, alleging that Foy didn’t provide her son with adequate care, and violated state and federal law.
“My son needs this care, and as a single mother, I am unable to just go to a different state every time he needs to see a neurologist or needs a medication,” Ririe wrote in July.
Repeat MRIs recommended by epileptic specialist
Walter had his first MRI in February 2018, at the age of 1. St. Luke’s noted then that he had an abnormal brain. Five months later, Walter was diagnosed with Angelman syndrome.
In March 2019, the epilepsy diagnosis was made, and Ririe said she requested a repeat MRI after the new diagnosis. Foy would not approve the additional MRI, Ririe said.
So she sought another opinion. Ririe said she paid out of pocket to travel to Seattle Children’s Hospital with Walter and consult with another child neurologist. In October 2019, Ririe saw a pediatric neurologist there who recommended another MRI. St. Luke’s then reviewed the recommendation and scheduled one. Walter received the MRI in late January 2020.
Ririe was told once more that an additional MRI was not necessary earlier this year. On June 9, Seattle Children’s Hospital noted that Walter “needs a follow-up brain MRI,” in a recommendation signed by Dr. Dararat Mingbunjerdsuk and faxed to St. Luke’s. Mingbunjerdsuk declined an interview.
Ririe was denied another MRI by St. Luke’s in late July, around the same time she was told she would no longer be welcome at the Boise health care system, according to medical records. For this story, Ririe submitted several disclosure forms so St. Luke’s and Seattle Children’s Hospital would be allowed to speak freely about her case with the Statesman.
Dr. Kenny Bramwell, system medical director for St. Luke’s Children’s Hospital, said in an interview with the Statesman that MRIs for young children are invasive procedures, often requiring anesthesia and ventilation. MRIs for someone Walter’s age would be done “with some degree of caution,” he said. (Ririe said she had asked for an MRI when Walter was already being put under for other procedures.)
Dr. Edward Novotny, a pediatric epileptologist at Seattle Children’s Hospital, didn’t treat Walter and couldn’t answer any specific questions regarding Ririe’s case. But regarding general questions about epilepsy in children, he told the Statesman that the benefits of repeat MRIs — particularly in toddlers with delayed development or severe seizures — outweigh how invasive they can be.
“This is especially true when performing the MRI at centers that have a great deal of experience performing sedation on infants and toddlers,” Novotny wrote by email.
Multiple MRIs over time can also provide important information about how the brain is developing, or the next MRI may show something new, Novotny said. He said the MRI is the procedure of choice for children with epilepsy, citing recommendations from the American Academy of Neurology and other medical organizations.
Information about the types of seizures a child is experiencing is also critical, Novotny said, with an electroencephalogram to detect abnormal brain activity. St. Luke’s officials said Ririe wouldn’t reschedule a 24-hour EEG, which had also been recommended by the Seattle epilepsy clinic. Ririe said she canceled the EEG because a similar, shorter procedure had been tried before — at that time, Walter could not sit still, and was pulling out his hair, she said.
St. Luke’s officials also said Ririe had canceled or didn’t show up to five appointments last year, one of the primary reasons they listed for Ririe’s termination.
Ririe said the no-show appointments were the result of emergencies involving Walter. She is also physically disabled as the result of an arm injury and can’t carry Walter on her own, according to records. She often needs to ensure she gets help, she said, making appointments particularly challenging for her.
Bramwell said Ririe’s is the only patient relationship St. Luke’s Children’s has terminated since August 2019, when he began his new role at the hospital.
St. Luke’s responds to allegations
Before St. Luke’s refused specialized care for Ririe, the health care system had asked her to sign a behavioral agreement. The agreement, which St. Luke’s shared with the Statesman, asked Ririe to agree to a set of expectations.
Those mostly included items such as not threatening or demonstrating disruptive behavior toward staff, treating staff with dignity and respect, and using a “normal tone of speech” and appropriate language. It also included contacting the clinic 24 hours in advance if appointments could not be kept and complying “with treatment plan and recommendations.”
Ririe said she felt bullied into signing the form, and that the agreement would give up her free speech and autonomy. She didn’t sign it. She said she believed St. Luke’s, at that point, was trying to force her out. She was told at that time, she said, that no other patient has refused to sign the form.
Bramwell said health care workers put up with “an enormous amount of difficulty from families,” and turning them away is “a last resort.”
“If you go to a restaurant, and you’re upset and unable to be rational, they ask you to leave,” Bramwell said. “If it keeps happening, and it doesn’t get better, we ultimately do have the option of saying: ‘You know what? We’re sorry, but this just isn’t working.’ ”
Ririe acknowledged that she had been frustrated and was at times abrasive toward staff. She said St. Luke’s staff informed her by phone she would not be allowed to switch doctors because it was “against clinical advisement.” She then told staff Foy was being “petty and egotistical.” That was when she was informed she could no longer seek care at St. Luke’s, she said.
But Ririe said she acted that way after she encountered roadblocks for what she thought were reasonable requests to get Walter better care — including seeking MRIs and switching medications, after she said the pills she was given made Walter a “zombie” and a safety risk to himself. She said she was told to wait before switching medications, and by then he could no longer sit up straight on his own.
“I’ve never threatened anybody with any kind of harm at all. I never specifically called someone a name,” Ririe said. “I literally used curse words and raised my voice when I was frustrated, and hurt, and devastated as a parent with a sick child. Which is not out of the realm of normal.”
St. Luke’s officials didn’t outline specific incidents with Ririe, citing the sensitive nature of discussing a hospital case. When asked why St. Luke’s didn’t first try to grant Ririe’s request to switch doctors, Bramwell said St. Luke’s didn’t feel that changing physicians would fix the underlying problems. He said those were Ririe’s behavior toward clinic staffers and the no-show appointments.
“It’s not something we do lightly, it’s not something we do even routinely,” Bramwell said. “It’s in essence a last resort when we can’t get a family to engage at the level we need them to.”
The July 20 letter that Ririe received, signed by Foy, said she did not follow the behavioral expectations outlined in the agreement she didn’t sign. St. Luke’s gave her 30 days to find a new doctor.
The letter said St. Luke’s would help transfer Walter’s care to any other pediatric neurologist. But Ririe criticized the health care system for not providing any viable alternatives, given there are no other pediatric neurologists nearby.
She has been able to get Walter’s Telehealth covered by insurance, a result of her inability to find a doctor in Idaho. But Ririe said she still worries about what would happen if he has no local neurologist in the event of an emergency.
“I can’t afford to hop off to Seattle every time he needs a new medication,” Ririe said.
If Walter needs new medication, that also likely means he’s actively having seizures — and it wouldn’t be safe to travel with him, she said. Medicaid has reimbursed her for previous appointments. But often additional expenses that come with the trip come out of her own pocket, she said.
Walter had another seizure Wednesday. This one was shorter than some of his others, Ririe said, having lasted about 10 minutes. He didn’t need hospital treatment this time. But for Walter, seizures are so severe, Ririe’s instructions are to provide him with his medication as soon as they begin.
Seizures can cause injuries, brain inflammation or breathing pauses. If those pauses last too long, while rare, they can lead to suffocation.
Ririe said she feels like she’s waiting for Walter’s next crisis. She fears for the next life-threatening incident, she said, and not having a local specialist has caused her anxiety.
But in the meantime, Walter continues to grow. And in her West Boise home in October, Ririe watched Walter take his first steps.