Thursday, September 29, 2011

EKG test and X-rays of hips/legs

We've been noticing that Caroline's often screams or cries in pain when putting weight on her left knee in certain positions. Her physical therapist suggested that we get X-rays to make sure her hips and legs were developing normally. The results didn't give us any information as to the cause of her pain, but we did find out that her left femur is 1 cm longer than her right femur so we need to follow up with an orthopedist. It's possible that this discrepancy in length may be the result or cause of other observed motor problems.

Also, the doctor at the Rett Syndrome Natural History Study we attended in August suggested Caroline get an electrocardiogram (EKG) to rule out any cardiac irregularities associated with the disorder. Mike took her to get the test this morning and the results were normal.

Monday, September 5, 2011

Arm braces helping with hand use!

As I described in previous posts, one of the hallmarks of Rett Syndrome is the loss of hands skills and development of repetitive hand movements such as wringing, mouthing, and clapping. The hand movements are involuntary and constant while Caroline is awake.  The role of these stereotypies in RS is not yet explained.

Caroline's hand movements began in April at 15 months. At that point, the movements resembled clapping.  Around that time, we noticed she was no longer manipulating objects the way she used to and seemed to frequently drop her toys.  In May, the clapping turned into the "classic" wringing and mouthing associated with the disorder.  By the end of that month, she had lost most of the ability to use her hands to self feed and play with her toys.  The constant mouthing and wringing often leads to rashes on her hands and around her face.

We explored the use of arm braces (splinting) as a way to disrupt the movements and increase functional use of Caroline's hands.  We are amazed at the impact of the braces so far!

Below is a video of the first few moments with the arm brace

Another video of Caroline showing purposeful use of her hands as she meets her new buddy!

Friday, September 2, 2011

Training to walk!

We picked up Caroline's Pony Gait Trainer from Early Intervention this morning.  This adaptive device is essentially a "walker" that will help Caroline learn to take steps while providing her the therapeutic benefits of standing.  Right now, Caroline uses both legs at the same time to push forward, but the goal is for her to learn to balance and coordinate movements. 

Caroline seemed to really enjoy the freedom she got from her new walker!