Third opinion received from Shriners Hospital

Local friends and professional told us that Shriner's Hospitals for Children are experts in scoliosis treatment. Although we were satisfied with are second opinion, we went to Shriner's just to "check it out."
Dr. Asgar, the orothedic surgeon there spent over an hour with us followed by Janet Cerrone, PA. Dr. Ashgar throughly explained scoliosis and the evolution of the surgeries for the disease. He showed us x-rays of other children that had the disease and before and after surgery films to compare. We learned that they are researching a different surical technigue using staples in the vertebrae to control the curve. He explained that the research is relatively new but that the staple technige and avoid some of the complications that the grwoing rods create-such as a stiffening of the spine and rod breakage.
Janet Cerrone spent another hour with us discussing bracing and thoroughly examed Luke. She noticed what we had seen at our previous two appointments. Luke had a non-reactive abdomneal reflex on one side.
Luke had the bending x-rays that day at Shriner's. He was measured for a brace and was given the choice of color or pattern for the brace. The choices were numerous ranging from teddy bears and firetrucks to outerspace scenes. Luke picked a pattern called "solar." We also left that day with a prescrption for an MRi of the spine, to rule out any anomalies such as those mentioned by our second opinion, the cyst, the tethered cord, etc.
We were to return in 3-4 weeks, when the brace would be in and given to Luke.

Second opinion confirms treatment options

Our second appointment we scheduled with Geisinger Hospital orthopedic surgeon, Dr. Hess. He throughly examined Luke, was very friendly and patient and answered all of questions. His recommendation was to see Luke in one month, have "bending x-rays" taken and then order a brace. He mentioned that depending on the x-rays he may order an MRI of the spine. He told us that in rare instances there can be something causing the scoliosis. Examples he gave were a cyst, a tethered cord. He said that although rare, they could be easily fixed and then scoliosis would not be an issue. This to me sounded like something we should then hope for perhaps???
We planned to continue treatment with Dr. Hess and schedule a return appointment for June 6th.

First opinion at Pittsburgh Children's Hospital confirms Scoliosis

Following the X-Ray confirmation, we were referred to an orthopedic surgeon at Pittsburgh Children's Hospital, Dr. Timothy Ward. We learned more about the surgery that would be performed on a juvenille with continued growth. A spinal fusion could not be performed until growth is complete. "Growth rods" would be inserted and would require repeated surgery every 6 months to adjust the length of the rods until growth was complete. Dr. Ward explained that the surgery is difficult to recover from and that the rods can break in a young active child. He told us that avoiding or prolonging the need for surgery is the goal. He also told us that the braces are terrible and that keeping a 5 year old in a brace for 23 hours a day would be immpossible. He said that there is little literature to prove that bracing is effective anyway. Dr. Ward advised us to return with Luke in 6 months for additional x-rays to determine if his curve was progressing. The office visit lasted 10-15 minutes, during which most of our questions were answered with Dr. Wards hand on the door knob ready to move on to the next child.
On the drive home, we agreed that the "wait and see" approach did not sound good to us. We felt helpless, the goal is to prolong the need for surgery, although we were not doing anything to prolong it at this point--at least not for six months.

Annual checkup reveals scoliosis

(Roaring Spring, PA) Nason Pediatric Doctor, Dr. Sinder, discovers an abnormal curve to Luke's spine during a routine checkup. His muscle to the left of his right should blade appeared humped out. This was a big shock to us because we didn't notice it previously. As parents, we felt like we should've caught this ealier because it became more and more obvious in the hours following the discovery.

We quickly began researching more aobut the disease. We discovered it's a fairly common disease in teens, but juvenille scoliosis, (which is what Luke has) is more rare and more progressive. Scoliosis progresses as you grow, and having just turned 5, Luke has a lot of growing yet to do.

According to the X-ray, his curve was "32 degrees". A curve of 20-40 dgrees will typically be braced. A 40-60 degree curve requires surgery. The surgery an adolesent will have is a spinal fusion, but can you fuse the spine in a growing child?