|
Hello…I'm Sierra's mom. Sierra is 4 years old and was diagnosed with Rett Syndrome at age 2 ½. In this first post I would like to discuss Sierra's journey so far with learning to walk. Sierra has never taken a step unassisted, even before she regressed at 17 months. She did crawl very well and fast at 13 months, but slowly lost that ability and finally stopped about a year ago. We are very lucky to have a Rett Clinic within driving distance. They have been very supportive and optimistic that Sierra will walk! The non-expert Drs/therapists in Sierra's life have not always been so optimistic. One Dr. said that she would never walk because after 3 yrs of age if they are not pulling to a stand there is NO chance they will ever walk. He denied Sierra's gait trainer because of this belief. Unfortunately, like many Drs he was comparing children with Rett Syndrome to other disorders like Cerebral Palsy. This is a huge mistake, and it's important that we as parents do not give into this. Children who never walk have a lot more problems than those who do. Increased risk/worsening of scoliosis, osteoporosis, GI problems, etc. Rett Syndrome is VERY different from cerebral palsy. Girls with RS can/have learn to walk at any age. I recently talked to parents of a 5 and 8 yr. old who JUST started walking. One girl learned to walk at age 16! Since that discouraging appointment Sierra has learned to walk in a gait trainer in her physical therapy appointments! Luckily, despite that Drs recommendation, we won our appeal and just got her home gait trainer a few weeks ago. I get her into the gait trainer 2 times a day, about 100 or more feet each time. She has PT 2 times a week, one spent in a gait trainer and the other on a Litegait treadmill. It's very important that girls with RS have a lot of repetition. Sierra WILL WALK! I am optimistic that in a future post that I report that she is walking. Thanks for reading! |
Return to: If interested in writing a blog *Disclaimer- The thoughts expressed do not necessarily reflect those of K12 Academics* -------------------------------------------------------------------------------
|
