Jake was diagnosed with infantile scoliosis at 3 ½ months old when an x-ray was taken to rule out pneumonia. My maternal instincts, however, told me something was not quite right before that. While holding him in my arms, burping him, and bathing him, I could feel that his little spine was bent. But I told myself that I was being paranoid–that he was just a baby he and just wasn’t very strong yet. The x-ray that confirmed our fears showed two curves: a right thoracic curve that measured 20° and a left thoracolumbar curve at 19°. Our pediatric orthopedist informed us that about 85% of infantile scoliosis cases resolve themselves, and told us to “wait and see.” Three months later, our next appointment with him showed promise. Or so we thought. His curves measured 20° and 14° this time, and we were confident that he would resolve, as was our doctor. Four months later the curves measured 26° degrees and 13° degrees. We passed the 25° threshold; it was time for treatment. The doctor recommended a brace to be worn 23 hours a day, and we decided to seek a second opinion.
This is where our research began. Thankfully, we found InfantileScoliosis.org on our first attempt to gather information. We were introduced to the idea of early treatment with serial casting as gentle treatment for Jake’s crooked back, and the video “A New Direction” with Dr. Min Mehta provided by ISOP (Infantile Scoliosis Outreach Program) changed the way we felt about scoliosis. It gave us hope. We were armed with information to take to our next appointment with a new pediatric specialist. This doctor measured the same x-ray (from the first orthopedist) at 24° and 18°. He told us he was not concerned about the severity in degrees, but the rotation of the second curve worried him. This doctor, too, wanted to “wait and see,” but we were afraid of progression. We had to convince him to brace Jake.
Jake was 13 months old when he had his MRI to rule out congenital abnormalities. The following week he was put into his first TLSO brace, which was to be worn part-time at night. We wanted full-time brace wear, but the doctor didn’t agree. One month later, the in-brace x-ray showed the first curve was nearly straight and the second curve was in the 30’s. This was the highest it had ever been, and we were scared silly. How could a curve progress that much in only two months? Our doctor told us to stay the course, and he’d see us again in five months. We argued that this was too long to wait, but he was adamant. We left there scared and confused.
In the meantime, I joined the online CAST Support Group and was learning more from experienced parents there, than from our own doctors. I read a lot of good things about the good people at Shriners Hospitals helping small children and getting great results with early treatment. We decided to send all of Jake’s x-rays and medical history to the Shriners Hospital in Erie, PA., to ask for a professional opinion from doctors who specialize in progressive infantile scoliosis. Their medical team agreed with our second orthopedist: the rotation of Jake’s second curve was definitely “concerning,” although they weren’t sure whether Jake was a true case of progressive scoliosis. They invited us to participate in the ETTP (Early Treatment Trial Project) in November, 2005, where we would meet Dr. Mehta and get her opinion about Jake’s condition. That same week, ISOP also invited us to participate! We felt it was meant to be.
Our experience at the ETTP was awesome! We got to meet several of the parents we had “spoken” with on the CAST support group. We were also introduced to Jake’s current orthopaedic surgeon, and we had the opportunity to have Jake examined by Dr. Mehta. X-rays taken there showed his curve had decreased 5° to 28°. The brace was working. Her opinion: if we were to continue bracing, it should be worn 23 hours a day. Yes, Jake was a candidate for early treatment with serial casting as well, if that was what we wanted. I asked many questions in relation to Jake’s scoliosis, and the conclusion was that Jake was in the gray area: his x-rays weren’t conclusive one way or the other. Dr. Mehta was the third doctor to tell us she wasn’t 100% sure whether Jake had progressive scoliosis or resolving scoliosis. We felt very discouraged. We were hoping someone could definitively tell us the right path to take. Instead, what we learned is that Jake, his back, and his x-rays refused to be “put in a slot.” We learned that every case of scoliosis is unique to the child.
So the doctors put the decision in our hands. Did we want to continue bracing, or did we want to start casting? We agonized over what to do and weighed the pros and cons of each. Our doctor told us that, yes, the brace was working. But would it continue to do so? He assured us he could control the scoliosis and address the rotation better with a cast. Our greatest fear was to miss the precious window of rapid growth during the first two years of life, and Jake was already 15 months old. This fear, coupled with our doctors confidence, led us down the early treatment casting route. We are happy to say that we have not once regretted our decision. We could not believe how quickly Jake adjusted to his cast–he was his normal, happy, energetic self within days!
Our doctor was impressed with Jake’s progress after just one cast. Jake went from 28° before the cast to 8° out-of-cast. This was definitely a testament to early treatment: help the children while they’re young, before their curve(s) grow too large and become impossible to control. Our son is proof positive. After only two subsequent casts, he is now in a modified TLSO brace fashioned after the EDF (elongation, derotation, flexion) casting technique. Out-of-brace he is at 10° and 6° with zero rotation. (His curves keep changing and moving; he now has two curves again.) In-brace he is around 2° and 6°. Jake will soon be two years old; his period of rapid growth is nearly over. We cannot express how fortunate we feel to have seized the opportunity to use this growth when we had the chance.
We’re not sure how long Jake will be in his brace, but we hope and pray it will help keep him where he’s at. We will make an appointment soon for an echocardiogram. His geneticist has ruled that he has some sort of mild connective tissue disorder, and she is running tests to confirm which one. We believe (as do other parents on the support group) that scoliosis cannot be idiopathic. Something has to cause it. In Jake’s situation, was it his connective tissue disorder? Was it intrauterine molding? Was it postural? Or a combination of all three? More research needs to be done. Maybe if we learn the answers, we can learn how to stop further progression. Meanwhile, early treatment with serial corrective plaster casting will continue to be a necessary and superior corrective solution for infantile scoliosis.
The past 20 months seemed to have moved in slow motion on a road that was sometimes bumpy, but the journey has been rich with blessings. We will forever be indebted to ISOP, the organization that helped to educate us and champions for all our kids tirelessly, to Dr. Mehta for bringing her care and early treatment expertise to this country, to the compassionate team at Shriners Hospital in Erie for always doing whatever it takes, and to Jake’s orthopaedic surgeon, who “straightened out” our little boy and is just as excited about it as we are!
Thank you for reading Jake’s story. If you have any questions about his journey, please contact me at firstname.lastname@example.org.
Update on Jake March 2008
Jake only wore his brace for three months before growing out of it in September of 2006. We’ve had x-rays approximately every six months. His most recent x-ray in February 2008 was taken after nearly a year and a half since we stopped treatment. He has a 3.8 degree curve with minimal rotation. Our Ortho is happy with this progress as Jake (now 3 1/2 years old) has grown at a phenomenal pace of almost 6 inches in the past year! Our course of action now is to continue to monitor his spine frequently; his next x-ray is scheduled for one year.