Long-Distance Patient Finds Successful Epilepsy Care at Hoag
“When we moved to Arizona, Dr. Millett asked me if I wanted him to
help me find a doctor there,” she said. “I said, ‘No.
I’m staying with you. We’re with you for life.’”
It took four years, two induced comas, a litany of misdiagnoses, a laundry
list of incorrect (and in some cases dangerous) medications and four “second”
opinions before Emily Shafer found the right doctor for her daughter, Lauren.
Now that she has Lauren under the care of neurologist
David Millett, M.D., Emily said she isn’t going anywhere else.
“When we moved to Arizona, Dr. Millett asked me if I wanted him to
help me find a doctor there,” she said. “I said, ‘No.
I’m staying with you. We’re with you for life.’”
Dr. Millett treated Lauren with a powerful combination of autoimmune treatments
and newer antiseizure medications that have made an incredible difference
in her quality of life. He’s attentive to Emily and her daughter,
and he makes it clear that he is invested in Lauren’s health.
“He’s a partner,” Emily said. “You’re on
the team. He listens to you.”
The difference between where Lauren is now and where she came from is as
stark and as wild as Lauren’s story itself. In May of 2014, she
was a healthy 24-year-old working on a special assignment for her company
in Palm Desert. One day at work, she experienced what would be the first
of many seizures and ended up comatose and in the hospital by the end
of the day.
Emily drove to the hospital from her home in Rancho Cucamonga with nothing
but her purse. She had no idea how this inexplicable and dramatic event
would change the course of both their lives but expected to return home
with Lauren as soon as she recovered.
Doctors were able to stop the seizures, but they didn’t know what
caused them. Drug tests came back negative. They thought maybe it was
dehydration. Or a vitamin deficiency. After several days of what Emily
describes as inattentive and indifferent care, the desert doctors conferred
with the neurology team at a larger hospital, and it was decided that
she be transferred to the new hospital.
She arrived in respiratory arrest and in status epilepticus. Her treatment
– and her condition, didn’t get much better. Lauren had to
remain in an induced coma to keep the seizures from taking over her body.
Every time they tried to wake her up, the seizures would start again.
Finally, one of the tests came back positive: Lauren’s seizures
and neurological decline was caused by an extremely rare autoimmune condition:
her body was making rogue antibodies that crossed the blood-brain barrier
and disrupted normal communication between neurons and triggered seizure
activity continuously. Although finally diagnosed, she did not receive
the correct treatment, and instead she was prescribed five seizure meds,
and her seizures continued.
Six months went by, and Emily never left her side. When it became clear
that Lauren’s condition would require years of round-the-clock care,
she quit her job. She didn’t have a medical background when this
journey began, but now Emily’s speech is peppered with phrases like
“titrating her medications” and “status epilepticus.”
She said she had to educate herself because until she met Dr. Millett,
every doctor she spoke with tended to ignore her.
“One of the neuro team doctors at (a different hospital) shrugged
his shoulders and said, ‘She might never recover, and sometimes
you never know what causes someone to have seizures.’ I couldn’t
believe that they were willing to shrug their shoulders and just give
up,” Emily said. “The doctors just brushed me off.”
Through Emily’s vigilance, Lauren was able to return home and enter
rehabilitation programs to help with her speech and cognitive functions.
Between the seizures and the medication, she could no longer perform basic
tasks such as telling time, reading, writing, and general self-care. Lauren
struggled to communicate and understand.
Emily spent the next three years researching doctors and driving all over
Southern California to search for the right care for her daughter. One
night, she attended an epilepsy support group in Orange County with specialists
from all over the region. Emily made a beeline for one of the speakers
afterward, only to be disappointed by the neurologist’s lack of
interest. Hoag Neurosciences Nurse Navigator Sheena Dhiman was standing
nearby and encouraged Emily to give Dr. Millett a call.
“I thought, ‘Dang. How much farther do I have to drive to get
the right care and treatment for Lauren? How many times will I have to
start over supplying a new medical team with all of Lauren’s history?”
Emily said.
Emily prepared mentally for the same routine of tests and flipflopping
of medications that had become their normal, but right away it was clear
that Hoag’s patient-centric care and team-based comprehensive approach
was different.
“This is the first doctor ever where I can call, email, text and
they get back to me. They work with you as a team,” Emily said.
“He talks to my daughter. He talks to me.”
The failed medications that other doctors had insisted upon were removed
from her regimen. Instead, Dr. Millett recommended a newer antiseizure
medication and course of infusions with rituximab, a powerful form of
immunotherapy. Within a month, many of Lauren’s more noticeable
speech issues were gone. She started to read a little, count money and
tell time. Lauren is more engaged, starts conversations with strangers
now. Something she hasn’t done in years.
Her last seizure was Dec. 5, 2018.
“I can’t say enough,” Emily said. “They work as
a team, so you always have someone to talk to. And when you talk to him,
he’s not talking down to you. He’s not rushed. He’s
listening to you. During every visit, he is engaged with my daughter even
when she was struggling to talk. He has the patience to talk her through
it. It’s a partnership.”
Now that Lauren is regaining more of her cognitive function, she is growing
impatient. She wants to drive. She wants to find a job again. She wants
to drink sugar-and-caffeine-laden energy drinks and live life like a normal
30-year-old. While these goals are a bit off in the future, they are finally
conceivable.
“On our last visit, Lauren was pounding him with questions. He answered
her questions, discussed her issues, made her feel part of the decision
process,” Emily said. “And he smiled because she has improved
so much.”