Our son Ian was born on August 15, 2004. He was a full term baby and appeared to be a very healthy baby boy. Just before his 6 month well-baby check up, he began to sit up on his own. At that time, I noticed that the “muscles” on one side of his back seemed to be really big and he always leaned to one side, but I just chalked it up to him just learning to sit. When we brought him in to the pediatrician for his 6-month visit, she noticed that something seemed wrong with his back. She didn’t know what it could be, so she brought in another doctor to look at him. After they conferred with each other and called an orthopedist, they came back and told us that they thought it might be infantile scoliosis.
In February of 2005, we met with an orthopedist here in Virginia. They immediately had us take Ian in for x-rays. They would only let one person in to hold Ian down for the x-ray and I couldn’t get him to lay flat or still during the x-ray at all, but they did manage to get a film taken. The x-rays confirmed that Ian did indeed have scoliosis. Those “muscles” that appeared to be big to me actually turned out to be his rib hump. Ian was diagnosed with a right thoracic curve of 37 degrees. I was very overwhelmed with everything at this point. The orthopedist did not show me Ian’s x-rays nor did he tell the degree of his curve. I had to ask for this information. He prescribed a TLSO brace and requested an MRI be done. We were in his office all of maybe 5 minutes. I cried all the way home from that meeting.That night I immediately got on the internet and started researching treatment for infantile scoliosis. I had a hard time finding much information. I chatted back and forth with a parent on a message board who mentioned casting as an alternative treatment for infantile scoliosis. This was how I eventually found I.S.O.P and learned about the success that other parents were seeing in their children who were being casted early.
I immediately called Shriner’s Hospital for Children in Erie, PA and made an appointment for Ian to be seen and evaluated for a cast. We arrived in April of 2005, and they immediately took x-rays. This time the x-ray technicians were very careful to make sure that Ian was completely straight and not moving while they took the films. We were surprised to learn that it appeared as though he was resolving. His Cobb angle measured 29 degrees and his RVAD was 13 degrees. At that time, we decided to wait and watch since he seemed to be getting better. I wish I had known then how important it is too make sure the baby is as straight as possible and not moving for the x-rays. Had I known that, I would have been sure to tell the doctor that the first films were probably inaccurate.
So, we followed up with x-rays over the summer and he appeared to be staying pretty stable. He didn’t improve, but he didn’t get worse either. Then, in October 2005, we had another x-ray taken and learned that Ian was progressing. His supine x-rays showed a 32 degree Cobb and his standing x-rays showed a Cobb angle of 36 degrees. I immediately called Shriners in Erie, PA. and they scheduled Ian to be evaluated at the second ETTP (Early Treatment Trial Project) Nov 2005. Dr. Mehta reviewed the x-rays we brought with us and felt Ian was definitely going to progress due to the amount of rotation he had. She told me it was the most rotation she had seen in a Cobb angle of 32 to 36 degrees. Ian was again x-rayed during this conference and in just four short weeks since his films were taken the previous month, he had progressed again. He was now 43 degrees Cobb, 22 degrees RVAD and he also had 45 degrees of rotation.
Ian was put into his first cast on November 8th, 2005. In his cast, he was down to 7 degrees. We were to return in 8 weeks for a second casting. Ian adapted quickly to his cast. He did have some difficulty sitting in shopping carts and sitting on the floor, but that became easier within a few weeks.
In January of 2006, Ian returned to Erie for his second cast. We were pleased to learn that he was now down from 43 degrees to 26 degrees out of his cast! We continued to have success with his subsequent casts, and he is currently down to 11 degrees out of his cast. Ian is in his 6th cast now. He will likely have one or two more casts before he goes in to a brace.
We really couldn’t be happier with his progress and are indebted to both ISOP and Shriners Hospital in Erie, PA., for helping us to understand the importance of early treatment and using growth as a corrective force in treating progressive infantile scoliosis.
Please feel free to contact me at noellesmommy@comcast.net , if you have any questions about Ian’s early treatment experience.
Sincerely,
Jennifer
2008 UPDATE!
After 8 casts and 1 brace Ian is now at 3 degrees, which is no longer considered scoliosis!!
