Mother of boy with autism uses iPhone app to communicate with healthcare providers|
CHARLESTON, South Carolina, USA: Apparently necessity is the mother of invention. Florence Iwegbue used to lug a suitcase of binders that detailed Dilibe's care as she shuffled from doctor to doctor. Now, she carries her iPhone instead.
"When we're asked questions about our son, we can give more informed answers," she said. "It has improved his quality of care and made our lives easier."
Health care providers, including Dilibe's pediatric nurse practitioner at the Medical University of South Carolina, hope technologically savvy patients and caregivers will use the Iwegbues' app to manage not only autism, but a variety of chronic illnesses.
"This can help patients make very complex care a lot simpler," nurse practitioner Shannon Vaillancourt said.
Dilibe's diagnosis was devastating to his parents and two older sisters. The family was determined to give Dilibe the best care they could, including trying alternative approaches. They fed him a gluten- and sugar-free diet, kept a food diary and took him to an acupuncturist.But the extra effort caused extra stress for his parents.
From neurologists to speech therapists, Dilibe regularly sees a dozen health care providers and takes 29 prescription medications and supplements, his mother said.
To keep everything in order, she toted 13 three-ring binders from doctor to doctor."They want you to track and monitor everything," she said. "Everyone wanted information from you."
Managing Dilibe's care took a toll on his mother. She said she became depressed and withdrawn from her family.
The mother of three, who was trained as a lawyer in the United Kingdom after leaving her native Nigeria, reached breaking-point in July as she packed for a trip to Great Britain, where Dilibe was scheduled to undergo a hyperbaric oxygen treatment.
"Because I was the manager of my son's care, I was constantly knee-deep in this stuff," she said. "I was really, really down."
That's when her husband presented her with a prototype of the iBiomed app - an experiment he'd been working on for three months.
Kwame Iwegbue, an emergency room physician in the Roper St. Francis Healthcare system who lists computer programming among his hobbies, began building the app because he was sad that his wife was sad and wanted to raise her spirits.
"I didn't think I was doing enough to help out," he said. "This was something I could do to ease her burden."
His wife was so touched about the app that she burst into tears of joy and began using it on her iPhone immediately.
"It had a lot of bugs in it at first, but I told my husband how to clean it up and make it more useful," Florence Iwegbue said.
Apple data shows the iBiomed app has been downloaded about 6,000 times since it became available in August, Kwame Iwegbue said. While the app is free, access to some advanced features costs $12.99.
The app includes some elements that caregivers might expect: alerts for taking medications and going to doctors' appointments, for example.
It has a "supply tracker" that shows how much medication is left before it's time to re-order and a time-stamped journal feature for caregivers to note therapists' recommendations and jot down questions for doctors. Other features encourage caregivers to take a scientific, cause-and-effect approach to investigating what ails their child.
Florence Iwegbue pointed to the app's "graphing feature," which allows caregivers to plot a child's habits - seizures or sleeping patterns - over a period of time. She used the feature to chart Dilibe's daily sleep, assigning the number one to a sleepless night and the number 10 to a full night's sleep.
On one recent night, Florence Iwegbue was prepared to plot a 10 in the graph because Dilibe had settled down for the night. But when Dilibe's older sister started eating French fries, he wanted to eat some, too.
"After that, he started jumping around and wouldn't go to sleep, even though he'd been so restful before," she said.
She examined the graph, cross-checking Dilibe's sleepless nights with the app's date-stamped diet tracking feature. It showed what she had suspected: "We had potatoes for dinner on the nights he didn't sleep well."
After they eliminated potatoes from Dilibe's diet, the boy began regularly sleeping well."With an autistic child, any little change could have an effect," Florence Iwegbue said.
The Iwegbues' methodical approach to Dilibe's care impressed health care providers, who hope the free app will help patients and caregivers manage a variety of chronic illnesses.
Vaillancourt, Dilibe's pediatric nurse practitioner at MUSC, said she has noticed positive changes in her patient and his parents in the year since he was diagnosed.
"What they've done for him is absolutely amazing," Vaillancourt said. "He's a different child than he was a year ago, and they seem a lot more comfortable and less stressed."
Vaillancourt said she plans to recommend the app to the technologically savvy families she treats.
"This can go beyond autism management," she said, suggesting people with migraine headaches can enter the food they ate and their migraine frequency, just as the Iwegbues charted Dilibe's diet and sleep patterns.
Dilibe's occupational therapist, Melanie Maxwell, has already recommended the app to several families she works with in the Charleston area.
When Maxwell notices changes in Dilibe's behaviour - if his language skills have improved, for example - his mother checks her iPhone to see what changes her son has been through since the last session. They used the device to find that shots of vitamin B12 coincided with increased eye contact and engagement, Maxwell said.
"It's great for looking for finding trends," she said.
Beginning next week, the app will have a sharing feature that will allow health providers to access a patient's data using a password, Florence Iwegbue said.
"It makes the caregiver's life easier and it increases the likelihood of success for the child," she said. "This app can be so valuable to the people who need it."
(Source: Post and Courier, November 27, 2010)