PWS children often develop scoliosis. Their muscle system is floppy and weak all over their body and do not make enough support for their bones and spine during their development and growing. Also they are at an increased risk of developing osteoporosis because they have low levels of sex hormones and growth hormones.
I would like to highlight two important solutions for scoliosis what were recommended by one of the best orthopedic surgeon MD Harold Van Bosse who also specializes in PWS patients in USA.
Stony has scoliosis just like so many kids with PWS. He has two curvatures in his spine with a 30 and a 36 degree what needs to be treated and monitored. When MD Harold Van Bosse orthopedic surgeon saw Stony’s Xray for firt step he recommended nighttime bending braces. He explained that these braces are very effective and only needs to be put on during nighttime. This can be a very good option for those PWS children who have behavior issues and sensory integration issues…and if it is applied in time the spine surgery can be avoided altogether!
MD Van Bosse recommended two different type of nighttime bending braces either the “Charleston” or the “Providence” brace.
He says: ” ..these braces push well on the lower curves and only need to be worn at night, hopefully making brace wear a little bit more tolerable for smaller children..”
Photo of a Charleston banding brace:
and he follows: ..”he control and monitoring is very important along the nighttime brace unless or until either curve got larger than 50 degree. Because at this point it is considerable to implant the expandable spine rods to manage the curve while the child’s spine is still growing.”
And at this point kicks in the absolute game-changer solution : the MAGEC rods!
The MAGEC (MAGnetic Expansion Control) System is used in the treatment of severe progressive spinal deformities. MAGEC is an adjustable growing rod that utilizes an External Remote Controller (ERC) to non-invasively distract the implant. Following a surgical procedure to implant the MAGEC rod, the device is distracted using the MAGEC ERC, thereby eliminating the need for additional surgeries to distract the spine, as with traditional growing rods.
How MAGEC Works
The MAGEC System includes proprietary spinal implants (growing rods) and an External Remote Controller (ERC). Magnets outside the body contained in the ERC communicate with magnets in the implanted MAGEC rod to adjust its length. MAGEC works with standard pedicle screws and hooks for increased ease of use. The MAGEC ERC is a portable, hand held unit that uses permanent magnets to modify the length of the growing rod. The amount of distraction is visible on the MAGEC ERC display screen.
These self expanding rod is a game-changer and do not need nearly as much surgery during growth as the other older technologies.
MD Van Bosse’s team was trilled when in 2014 the MAGEC was also approved in USA.
Hereunder I am adding some pictures about the MAGEC rod and it’s ERC:
How it helped already in many cases: