Pediatric Informatics: Computer Applications in Child Health (Health ...

60 L.W. Desch and P.H. Lipkin
While waiting for the appointment, Jeffrey’s parents began to notice that he
seemed to have periods of “hiccups” several times per day that were increasing in
frequency. After several days, they took him to the emergency department (ED) of
the local children’s hospital. Since the pediatrician’s office EMR linked directly
to the hospital EMR, the ED physician could access the office notes (after Jeffrey’s
parents gave consent). From these, the diagnosis of probable seizures was quickly
made and the appropriate Pediatric Neurologist was contacted. She saw Jeffrey
in the ED and admitted him with a diagnosis of infantile spasms and mild left
hemiplegia. On further testing, Jeffrey was found to have had a stroke in-utero due
to Factor V Leiden deficiency, an inherited coagulation disorder. He was started
on ACTH treatment by the specialist, who used clinical decision support from a
Neurology Website to determine the appropriate dosing.
While in the hospital, the parents were able to learn more about his diagnoses using
the hospital’s online digital patient library which connected them to patient information
from the National Library of Medicine 31 using an information prescription 32 from
Jeffrey’s pediatrician. The neurologist had a number of patients from different parts
of the country with similar problems, and Jeffrey’s parents were able to meet other
parents whose children had similar disorders using the hospital’s computerized videoconference
system and Internet services. The parents were also able to locate Internet
resources to help the rest of their family. They arranged a tele-psychiatry videoconference
for their teenage daughter Laura, who had been treated for depression and anxiety
in the past and was now having more difficulties as a result of the parents’ anxiety
about Jeffrey and their need to devote so much time to his medical care.
Jeffrey responded well to the ACTH therapy but had adverse effects from this
medication (which had been reported in the computerized medication database).
Jeffrey’s parents and pediatricians were aware and well-prepared for these with
information from the database. The effects were mild and did not require discontinuation
of therapy.
On Jeffrey’s discharge from the hospital, his neurologist prepared a discharge
summary and a care coordination plan which were sent directly to his pediatrician’s
office EMR. This care-coordination plan was particularly useful to the pediatrician
because it contained an emergency care plan so that she and the parents knew exactly
what to do in the case of increasing seizures (which occurred several months later).
Since Jeffrey’s seizures were unusual in their clinical appearance and in the
EEG findings, his pediatric neurologist contacted a British expert on unusual
seizure types who had recently presented an Internet-based teleconference on new
medications for seizures. Through review of the history and video EEG (via a
secure online connection) and a virtual office visit with Jeffrey, his parents, and the
primary-care pediatrician, the expert observed some unusual skin changes in both
Jeffrey and his parents that had previously gone unnoticed. He diagnosed a second
disorder, tuberous sclerosis, as a possible cause of Jeffrey’s seizures.
Jeffrey’s care management plan and its coordination was soon revised by his
primary care pediatrician with input from all participants. These were then shared
with his pediatrician’s and neurologist’s EMRs and subsequently to a shared
database with decision support for use by his physical and occupational therapists