As I read and chronicle all the stories for Scoliosis Awareness month, the common themes jump out at me. I've always known they were there, just from listening to others talk over the past 3 years. But seeing a new story every day - it really makes it resonate.
Infantile Scoliosis is rare. Progressive Infantile Scoliosis is extremely rare. 90% of infants who are diagnosed with scoliosis have curves that will self-resolve as they grow and develop. Makenna is the 10%. All the families that I've met over the last 4 years - their kids are the 10%.
My little pink note... here's what it means:
At 5 months old, the mother noticed the curve.
She finally got someone to x-ray him at 11 months. At that time, his curve measured 42 degrees. They were told to wait and watch.
On their return visit at 17 months, his curve measured 60 degrees. He was given a brace.
After wearing the brace for 4 months, at 21 months his curve measured 90 degrees.
In 10 months, he had a 48 degree increase in his curve.
In those same 10 months, at that age, he could have received four corrective casts.
He finally began casting at 90 degrees. He had fairly steady numbers in cast. He would hold at about 57-62 out of cast and 28-32 in cast. He is currently in a brace full time still steady at about 57-62. His family is holding off surgery as long as possible. He is 6 years old.
I wish his story was different. I wish so many of the stories were different.
I want infants with curves in their spine to be referred to pediatric spinal specialist. I want x-ray technicians to read an RVAD on infant spinal x-rays to predict progression. I want doctors to offer casting as a first line of treatment in infantile scoliosis.
Those are the changes I'd like to see happen in regards to infantile scoliosis diagnosis and treatment. If Makenna's experience has helped families avoid the wait and watch period and find the best treatment possible then it has a meaning.
While only 10% of infantile scoliosis cases are progressive, those 10% deserve the best treatment possible. Wait and watch is not it.
That little pink note is a reminder of what "wait and watch" looks like.