Running For Research - PWSGross motor skills can be challenging for those with PWS. Infants typically demonstrate hypotonia leading to a delay in the achievement of gross motor milestones. Sitting is usually around 12 months, walking at 24 months. Developmental skills should be closely monitored and Early Intervention should begin as soon as possible.
Overeating and obesity may become a problem in the preschool years as the child progress through the stages of development of hyperphagia. Low muscle tone often improves but gross motor skill progression may be hampered by abnormal weight gain. Children with PWS may continue to have problems with strength, coordination, balance, and motor planning, and they may have delays in activities such as jumping, climbing, and catching. Fine motor skills are also delayed, with difficulties in activities, such as drawing and writing.
Motor problems often compound learning and behavior problems. Interventions with growth hormone therapy and rehabilitation techniques, such as orthotics and therapies, help maximize function. Orthopedic complications, particularly scoliosis, are often observed. In addition to therapies, adaptive and modified physical education programs are recommended to maintain strength, muscle tone, and function.
Gross motor skills, while certainly delayed compared to typical peers, have been a relative strength for Clementine. She definitely has low tone, which is not something that will ever go away, but with a tremendous amount of effort and two fabulous PTs (Tammy Buck, Barbara Ann Smith) Clem can do most of the things other kids her age can do. Things like climbing, walking long distances, running and swimming.
Clem began PT at around 2 months of age. She was delayed in rolling, sitting and crawling and really preferred to sit quietly and observe more than move around and explore. Clem began to crawl at around 12 months and was walking by age 2. Balance has always been a bit of an issue and she does have a distinctly awkward gait when running, but she can get it done.
We were advised by Clem’s doctors and therapists from day 1 that we must keep her at or below the average weight for someone her size. Extra weight is a greater than normal burden for someone who has low tone. Luckily, because of growth hormone and a favorable genetic predisposition (thank you to our French side of the family!!), weight has not been too much of a struggle. Don’t get me wrong, we STRICTLY control her diet and significantly restrict things like sugar and artificial sweeteners. Also, because of her T1D, we count every carb. The general rule is that if a food tastes sweet, it probably isn’t going to make the menu. We do make exceptions on special occasions but they are few and far between.
We incorporate exercise into Clem’s daily routine. Every day. No exceptions. For the past three years, she has been spending about 6 months out of every year training for the Running for Research PWS 5k. Currently she walks on the treadmill for 30 minutes every day at a speed of 3 to 3.5 miles per hour and she performs an exercise routine that takes about 15 minutes to complete. Last night, she held her superman pose for 25 seconds at a time and in a set of 7 repititions. For those of you that do this exercise, you know that’s pretty good!
If you read my post yesterday, you know that Clem has developed scoliosis and will need to start the bracing process very soon. It’s hard and most unwelcome but we are determined that the brace will not slow Clem down. She will continue to be as active as she can. Her health depends on it!
