Levine Children’s Hospital opens Charlotte’s first low-dose X-ray suite
For years, Caleb Platt’s mother, Tanya DeGroot, felt something was off with her son – despite hearing otherwise from several different doctors.
“His whole life has been a battle,” says DeGroot. “He was born really long but he dropped way down in the growth charts over the years. He wanted to be carried a lot – his feet hurt, his legs hurt, his knees hurt – he couldn’t walk straight for more than five steps and his little sister would run circles around him. I had gone to a lot of doctors who said he was just bow-legged and he would grow out of it.”
Finally, a Diagnosis
That all changed about two years ago, when doctors at Carolinas HealthCare System’s Levine Children’s Hospital determined the cause of Caleb’s unusual gait. Now 13 years old, the seventh-grader from Mooresville was diagnosed with vitamin D-resistant rickets.
Also called X-Linked Hypophosphatemia, or XLH, it is one of the most common types of rickets disorders. It affects about 1 in 20,000 people and typically gets passed from one generation to the next. Caleb’s mom also had XLH, too, but she didn’t know it.
Passed on through the X chromosome, XLH involves the abnormal regulation of vitamin D and phosphorus levels in the blood. As a result, the bones do not get the minerals needed for normal strength. This can cause knock-knees or a bowing of the legs, two more noticeable symptoms of XLH.
“The biggest thing for me was being able to find out what we are dealing with and having my gut-feeling validated,” says DeGroot. “Things are finally starting to make sense – and it means so much to finally have a diagnosis, especially now that he’s in his growth spurt.”
The Best Care Close to Home
While Caleb still has to get full-body imaging scans about every six months, a new, safer low-dose X-ray technology at Levine Children’s Hospital will make patients like Caleb more comfortable during scans. Caleb will be the first patient at Levine Children’s Hospital to be scanned using this new technology.
Levine Children’s Hospital is the first hospital in Charlotte – and the second in North Carolina – to use the technology. Doctors say it will be especially beneficial for children like Caleb, because it greatly reduces exposure to radiation compared to standard X-rays or CT scans.
The new imaging device uses low-dose radiation to create three-dimensional, full-body images of a patient standing on their own weight. It is one of the only types of machines in the world that can capture such an accurate view of the spine and lower limbs – with such a range of detail – so effectively.
Caleb has used the technology before out of state, but now he can get the care he needs with less travel.
“When your bones hurt, having to lay down and turn is brutal,” says DeGroot. “So, for him to be able to stand is so much easier. We are in and out in minutes instead of traveling out of state and struggling through 13 different X-rays done 13 different ways.”
Simple Test Leads to Diagnosis
The doctors at Levine Children’s Hospital were the first to suggest physical therapy for Caleb after performing a simple, but insightful test, says DeGroot. Edward Spence, MD, who specializes in medical genetics, asked Caleb to walk backwards during their first visit together.
“When other doctors asked Caleb to walk, they’d have him walk forward and he would stand up tall and correct his gait,” says DeGroot. “But Dr. Spence had him walk backwards and you could immediately see something was off. That’s what helped lead to his diagnosis.”
Active Future Ahead
“Caleb’s improvement stems, in large part, from Dr. McKay’s phosphate replacement treatments, which helped improve his condition and certainly will prevent future progression,” says Caleb’s doctor Brian Scannell, MD, an orthopedic surgeon at Levine Children’s Hospital. “I am optimistic that Caleb won’t need much from me in regards to future surgeries, but I will continue to monitor him. He has a lot of growth left at just age 13, so we’re hopeful he’ll live a normal life.”
Caleb also continues to work with Charles McKay, MD, a pediatric nephrologist at Levine Children’s Hospital who specializes in bone and mineral disorders. Dr. McKay has prescribed the phosphorus supplements and vitamin D that Caleb’s body needs to form healthy bones. And Caleb visits Carolinas Rehabilitation in Mooresville, also part of Carolinas HealthCare System, twice a week.
“Having a group of doctors who know what they are looking for is everything,” says DeGroot. “We are seeing improvement in Caleb every day. He’s 5 feet 2 1/2 inches tall – finally over average height – his leg strength has improved, he’s growing better and he loves to mountain bike a lot.”