The above image of my child’s spine suffering from Progressive Infantile Scoliosis at age 19 months is shocking, but I have such amazing, happy news, you guys!
I can barely believe we have been on this journey for three and a half years to save my boy’s spine from dangerously curving and crushing his heart and lungs, like it was aiming to do when he was just 19 months old. Just a baby- my baby.
Three and a half years later, here where we travel for his medical care in Salt Lake City, Utah at Shriners Hospital for Children, we received the best news yet–
After beginning at a 63 degree COBB angle curve, Bex wore 10 Mehta EDF casts that were each applied while he was in traction under full anesthesia, then a Boston style brace full time for over a year.
He has been in casts and braces for more than half his young life and baby, it has ALL BEEN WORTH IT!!! Believe your eyes:
Bex measured yesterday down from 63 to just 1.21 degrees!
He got a new night time only brace called a Providence brace and above is his X-ray in the brace. This is by far the lowest, best number we’ve ever gotten- I think he was closer to 11 or 12 degrees in the day brace.
To put this in perspective, 0 to 6 degrees is considered “straight” meaning no scoliosis! To be technical, he will be a higher number in an “out of brace” X-ray, but this is still huge news for him.
It means he’s getting better and better and is almost certain to avoid the surgeries that would have kept him from playing sports and deformed his young body forever by causing his spine to be fused at possibly 8 years old- that would have been his full height, his height at 8 years old! A completely different life.
Kids who start those surgeries very young often have many life altering complications, including pain and severely decreased lung function. The surgeries are life saving if you have no other option, but we found this option for casting barely in the nick of time, two months later it would’ve been too late.
To be clear for other IS families out there, Bex would not have received this cure by bracing alone, proper EDF casting was vital. What you need to know is to act fast, the best chance for a cure is by beginning casting under age two.
Call Heather, visit ISOP for all of the info, join the CAST group, make your first appointments and get your ducks in a row, this disease does not wait and has no mercy.
Bex could’ve been done in 3 casts, not 10, if we had not been mislead by our original doctors.
We are ever and forever grateful to Dr. Min Mehta who innovated this technique, Heather Hyatt Montoya for forming her non profit ISOP, creating the invaluable C.A.S.T. Yahoo medical support group, being instrumental in bringing this cure to the U.S…
…And steering us to the brilliant and humble Dr. Jacques D’Astous and his team (hi to Angie and Mike and everyone at Shriners!).
And a shout out to Scott, who measured and fitted Bex’s fabulous new brace. Awesome job!
~ Bexon’s Mommy