At about three months, I noticed that her eyes were not tracking from right to left. We were referred to a pediatric ophthalmologist who ordered an MRI of her brain.
The MRI results indicated a diagnosis of a cranial sixth nerve palsy and strabismus (a condition commonly known as crossed eyes where eyes do not line up in same direction when focusing.) The eye doctor explained that Makenna was only using one eye at a time, but that each eye was actually quite strong by itself.
The eye that she wasn’t using would drift to a crossed position. The strabismus condition was affecting Makenna’s development, and as a result, delayed her ability to walk.
Makenna went in for eye surgery at 19 months. They realigned her eyes by tightening (shortening) the muscles on the inside of her eyes. A few days after the surgery not only did her eyes align nearly perfectly, but she got up and started walking. It was like night and day. It still gets me every time I think about it. It was like a second ‘birth day’. She came alive after that surgery. Before, she had to spend so much energy just trying to focus and make sense of the double vision that she just couldn’t engage in eye contact. Although the strabismus condition was successfully mended, the nerve palsy affecting Makenna’s ability to move her eyes outward, cannot be repaired.
After the eye surgery, we felt like they were in the clear and could breathe a sigh of relief. But in the summer of 2009, I noticed that Makenna was walking peculiar. Her right foot never quite got in front of the left. The neurologist ordered a second MRI to rule out any neurological causes of the discrepancy. But before we could get the results, I noticed during a bath that Makenna’s right rib cage was sticking out to the side. I ran my finger along her spine and felt a curve.
X-Rays confirmed that Makenna had a curve in her spine measuring 20 degrees. Technically, she would be in the “watch and wait” category of scoliosis to determine whether or not it was self-resolving or progressive. However, in Makenna’s case, there is a rare connection between the sixth nerve palsy and the scoliosis called Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS.) Basically, she has brain stem hypoplasia (underdevelopement), creating a cleft or ridge in her brain stem right at the nucleus of the sixth nerve. There are very few cases (about 80) reported in the world. All research indicates that the most troublesome aspect of the condition is the scoliosis. So this is where we turned our attention.
By chance, I met a mom with a 2 ½ year old daughter who had just gone through EDF treatment. This treatment option was never mentioned by Makenna’s doctors. I was directed to the website for Infantile Scoliosis Outreach Program (ISOP). After much internet research and phone calls, it became increasingly apparent that the best method for treating progressive scoliosis in someone as young as Makenna was Early Treatment with EDF (elongation, derotation, and flexion) using the Mehta Method.
I spoke with Heather who guided me on the proper procedure to get Makenna the help she needed. After some paperwork and red tape…we got Makenna into the program at Shriner’s Hospital in Chicago. She received her first cast in November of 2009. Makenna’s curve measured 25° prior to casting and she is currently casted at 0°! Every child with Progressive Infantile Scoliosis should be given the chance that ISOP and Shriner’s has given Makenna! We are eternally grateful.
I want to share Makenna’s story with everyone–not to dwell on all the challenges and frustrations we have encountered, but rather, to reach out to others who may be experiencing similar hurdles with their child. Searching for the best doctors, and the latest research or treatment options is the very best we can offer our children. As parents, we are their best advocates. We should always have faith and keep searching for answers.
To read Makenna’s full story go to: http://www.strengthofspirit.weebly.com
To view a blog featuring Makenna go to: http://thefontenotslife.blogspot.com/2011/01/infantile-scoliosis-makennas-story.html
If you wish to contact Amy Replogle (Makenna’s Mom) her email is firstname.lastname@example.org.