Diabetes Portal -- One of the Many Resources This Teen and His Family Embrace
"Now I'm a Walking Encyclopedia"
Samuel Kelly, age 14, enjoys staying active and playing football, baseball and soccer. Sam has Type I Diabetes.
Sam Kelly was 8 years old when he was rushed to Cincinnati Children's Hospital Medical Center. Delirious and barely conscious, he was experiencing Ketoacidosis -- a serious condition most common in untreated Type 1 Diabetes. Sam was placed in intensive care when he and his family were given the news that Sam had Type 1 Diabetes. Sam is 14 now and working hard to keep his diabetes under control. The diabetes portal is just one of the many resources the Kelly's take advantage of at Cincinnati Children's.
Robin Kelly had been working in hospitals for 14 years when she was told her 8-year-old son, Sam, had Type 1 Diabetes. "The signs and symptoms were all there…he was thirsty all the time and urinated a lot, but it was a hot summer so I didn't think much of it. As a mom, you just never envision anything life-threatening happening to your child," says Robin, mom of three from Fort Thomas, Kentucky. No longer an X-ray technologist, Robin now lives on the other side of the fence -- experiencing what it's like to have a son with a chronic condition and ironically, now she too has diabetes (Type 2).
Diabetes Portal
Before Sam's diagnosis, Robin's knowledge of diabetes was limited. "Now I'm a walking encyclopedia," says Robin. When she learned of her son's condition she took it upon herself to learn as much as possible. She and Sam travel to conferences, participate in support groups, clinical studies, the Pursuing Perfection team, and more. And now they're both frequent users of the Diabetes Portal -- a secure online communications tool that helps patients and parents manage diabetes and learn what they need to know in order to be active, informed members of the health care team. There are also Liver Transplant, Rheumatology and Cystic Fibrosis Portals available to patients and families.
The portal allows Sam and Robin to track Sam's blood sugar control, track his insulin dose, view lab results and more. Robin likes the fact that the portal "…puts the information right in front of people's faces" so when her son is at his pediatrician's office, they're able to access the portal and pull up Sam's records. Information is available immediately and there are no papers that can be misplaced.
"The thing I like best about the portal is the Q&A section," says Robin. The Q&A or Question and Answer area of the portal is a secure way for patients and family members to ask non-urgent questions, which are then answered by doctors, nurses, or other care team members within a 24-hour period. "The best thing I like about the portal is that non-urgent questions are answered within the portal so I don't have to wait around for a return phone call or hope that a doctor is available when I am." In the future, more portals will be developed for families with children that have chronic conditions.
Using the Resources Available
So what advice does Robin Kelly have for other parents struggling with a newly diagnosed child? "Be involved in your child's care. Educate yourself. Our family is very thankful for the people and resources at Children's. I advise parents to use the portals, the Family Resource Center, www.cincinnatichildrens.org and take advantage of the great support system offered at Cincinnati Children's."
Six Years Later...
Now 14, Sam plays football, baseball and soccer. He's an active teenager who's well aware of the struggles that diabetes can sometimes present. Remembering to take his insulin with every meal, checking his blood sugar level frequently and visiting the doctor every few months can take its toll but he's thankful there are so many around him who are ready to help.
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