Family Ties - Tampa Shriners Hospitals for Children Newsletter Vol. 1 Issue 5, Page 1

Welcome to the fifth edition of our newsletter Family Ties. As I mentioned in our last newsletter we have been approved for a major expansion and renovation project. Although we are not quite ready for hard hats yet, I am pleased to let you know that the planning and design phase is underway and the departments that are involved have been meeting with the architects.

The primary focus of the project is to improve our family centered environment We are excited that the addition of inpatient rooms will allow two patients instead of four to share a room in most of our patient rooms. A new parent area will be added as well, which will include six sleeping rooms and a parent lounge.

Several major changes will enhance key patient services. Orthotics and Prosthetics will be relocated to more than 10,000 square feet of new space on the second floor. A state of the art gait lab with motion analysis will also be added to the new second floor wing. The Rehabilitation Department including Physical Therapy. Occupational Therapy, Speech Therapy and the Seating program will be approximately 50% larger and will expand into the space currently occupied by Orthotics and Prosthetics. This will be an exciting year of change for the Tampa Hospital. Thank you once again for allowing us to be of service to you and your family.

Hometown Hero Alex Metcalf
honored at Shriners Hospital.

From stellar student to valuable volunteer, 16-year-old Alex Metcalf, a Shriners Hospital patient, was diagnosed with osteogenesis imperfecta (OI). known as brittle bone disease, before his first birthday. Today, more than 14 hospitalizations and 12 surgeries later, Alex hopes to participate in the OI research study offered at the Tampa Shriners Hospital.

Land O’Lakes Butter donated $1,000 to Shriners Hospital in his honor during a special presentation at the hospital recently. The patients were treated to a milk & cookies break, and Alex was also presented with a "Hometown Hero" plaque and a gift certificate to recognize his extraordinary accomplishments. Alex is a sports enthusiast who enjoys helping others. He has volunteered with Meals on Wheels and St. Joseph’s Hospital. He is an honors student at Plant High School and writes for the school newspaper. He has also kept statistics for his school’s baseball, basketball, and soccer teams. This isn't the first time Alex has been recognized for his contributions. He has appeared in numerous television advertisements and calendars for Florida Blood Services and was also selected by the United Way to carry the Olympic torch through Tampa on its way to the 1996 Atlanta Games.

New Hope on the Horizon for Children with Brittle Bone Disease
by Nancy Pisciotto, RN, ONC Clinical Research Associate

Patients with osteogenesis imperfecta (OI) , or brittle bone disease, are preparing to participate in a research study at the Tampa Shriners Hospital for Children. It promises new hope for children born with a serious, sometimes fatal, bone disease.

The oral drug, alendronate will be evaluated as a possible treatment for children with severe OI. Alendronate is a drug currently approved by the FDA for use in the treatment of osteoporosis in adults. The study will determine if administration of alendronate for two years will result in thicker, stronger bones, reduce skeletal pain, improve how well patients get around and reduce fracture rates in children with OI.

This crippling disease affects about one in nearly 20,000 children born each year. Similar to osteoporosis, OI causes frequent bone fractures, progressive deformities of the arms and legs, and chronic bone pain. Children born with OI are often confined to wheelchairs and sometimes don’t survive childhood. Up until now, various treatments aimed at increasing bone mass and reducing fractures had been tried in children suffering from the disease, but without significant success.

A study has been conducted over the past several years at the Shriners Hospital for Children in Montreal involving the periodic administration of an intravenous drug called pamidronate to 30 children with OI. Results of the study included reduction of bone loss and significant increases in bone mineral content. Furthermore, the number of fractures fell dramatically, indicating that the increase in bone mass was substantial. X-rays suggested new bone formation in 25 of the children. The chronic pain experienced by these children was also reduced, and most patients also became more mobile. Some children progressed from being wheelchair bound to walking independently, and others who previously used crutches, walkers or canes were able to walk independently. To broaden the patient population in furthering the research of this breakthrough drug therapy, the Shriners Hospital for Children in Tampa will participate in a multicenter study of alendronate (an oral drug similar to pamidronate) treatment of children with severe OI.

According to Shriners Hospital Chief of Staff Dennis Grogan, MD, "More than 100 children with OI have been treated here at the Tampa Hospital and we’re hoping the availability of this drug in the near future will significantly improve the quality of their lives."

Patients ages 4-18 years who are eligible to participate in this study include type III or IV OI and type I OI with either: chronic pain, 3 or more fractures per year for the previous 2 years, or limb deformity requiring surgical correction. For type III & IV OI patients not interested in participating in the oral alendronate study, intravenous pamidronate administration will be offered. The drug is administered intravenously over a 4-hour period on 3 consecutive days while in the hospital. Depending on the age of the child, the drug is administered every 6 weeks -4 months.

The results of this research program, headed by Dr. Francis H. Glorieux, M.D., Ph.D., Shriners Hospital in Canada and Tampa Shriners Hospital Chief of Staff Dennis Grogan, M.D., offers tremendous promise for children with this disease. It also provides new perspectives for treating other forms of bone disease in children. For more information about this alendronate research study or intravenous pamidronate treatment at the Shriners Hospital for Children in Tampa, please contact Clinical Research Associate Nancy Pisciotto, RN, ONC at 813-975-7130.