Cole was born on January 3rd, 2008, 1 hour before his due date, after an uncomplicated pregnancy and delivery. He received 10’s on his APGAR. The only funny thing about him was that his foot was bent up so his toes touched his calf. They reassured us that it was just because I was very tiny throughout my pregnancy and he must have been cramped. Otherwise there didn’t appear to be any problems.
Within a couple days of being home I noticed that his head was slightly misshapen and that he didn’t like to nurse on one side. His doctor reassured us that it was fine. We should keep trying to get him to nurse on the side he didn’t like. By 6 months he still did not like to turn his head to that side and the doctor kept telling me to keep trying to encourage him, and that because he could do it there was no reason to worry. Both the head shape and turning we later found out were related to his progressive infantile scoliosis.
At about 10 months, while bathing Cole, we noticed that he was developing a rib hump on the left size of his back. I brought it up to the doctor at a his 12 month check up and he didn’t think much of it. We started to notice a slight curve
in his spine, but only when he sat in certain positions. I brought it up again acouple months later at a sick visit, and mentioned that I thought it might be scoliosis, because it runs in my family. The doctor said it was too hard to check at this age, and that they wouldn’t treat him until 2 even if that is what it was. Finally by about 15 months Cole started to stumble when he walked, despite having been walking by 10 months, and started needing to hold his arm out at an odd angle to balance himself. At this point we became increasingly concerned and started to do some research. My husband found ISOP and knew immediately that Cole must have Progressive Infantile Scoliosis (PIS) after seeing the pictures of some of the other kids’ backs. We scheduled another doctor appointment immediately and went in armed with Dr. Mehta’s Growth as a Corrective Force article. Our doctor reluctantly sent us for x-rays reassuring us that as long as Cole was in a brace by his teens, we would be fine.
We got his x-rays and they came back at 45 degrees standing. We got a referral to a local orthopedic for the next week and immediately scheduled an appointment at the Golisano Children’s Hospital at Strong Memorial in Rochester to have him seen. The appointment with the local specialist didn’t go well. They wanted us to hold him in a Risser cast as long as possible then move on to growth rods until they could fuse his spine. 2 months later, when Cole was 17 months, we were seen in Rochester for Cole’s 1st cast. His curve had progressed from 45 degrees standing to 47 degrees laying down with an RVAD measured at 25. The casting went well and they got him down to 23 degrees in cast.
After his casting Cole got his MRI which revealed a small Chiari I malformation in his brain. At this point it is very small and only needs to be monitored. Otherwise, Cole is a healthy, happy and very active 2 year old, who has adapted to his cast very well. He is still the fastest and most active amongst his peers. He loves to show his cast off to everyone and makes sure to tell them how much he loves it. When he gets a cast break, he asks for it back on.
After 1 year and 5 casts Cole is now able to move into a brace. He surprised us all, when he jumped from 13 degrees down to 2 within a single cast. We now get to take him home in his new rainbow brace for a calm 6 months, of summer fun, and no doctors appointments! We couldn’t be happier with Cole’s progress and are so grateful to Dr. Mehta for her incredible work, Heather and ISOP for connecting us to this treatment which has cured our baby and to our fantastic orthopedic surgeon at Strong for getting us to where we are today! We can’t even imagine where our life would be today without the combined help of these 3 different people.
Cole’s Numbers:
- Pre-Casting: 47 degrees laying down
- 1st Cast: 23 degrees laying down, 50 degrees standing
- 2nd Cast: 18 degrees laying down, 30 degrees standing
- 3rd Cast: No x-rays taken
- 4th Cast: 13 degrees laying down, 15 degrees standing
- 5th Cast: 2 degrees laying down, 10 degrees standing
Sincerely,
Cole’s Family
