I recently attended a gathering for parents of newly diagnosed babies and children with Prader-Willi Syndrome. We met in a community room at Amore Coffee in West St Paul. As a parent of an older person with PWS, my son is twenty -eight, I was educated in how things have changed, since the birth of our child. All I can say is Wow! These new parents are amazing, they are informed and engaged.
It was the first time I had heard of swallowing studies being done on newborns. It makes perfect sense as the tongue is also a muscle. It would be effected by low muscle tone. While doing research for my book, Raising Robert, I spoke to a doctor who specializes in swallowing at the Children's Institute of Pittsburg. We discussed how food is sometimes left in the esophagus of people with the syndrome. She suggested drinking water during and after every meal. One of the babies, I was happy to hold, is able to bottle feed easily now at 6 months.
Growth Hormone is now given soon after birth. This has had a huge impact I believe in people with the syndrome living healthier lives. They grow taller and are able to grow stronger muscles. This helps with metabolism and the ability to participate more fully in exercise programs. I have seen several people, with PWS, who had not been given Growth Hormone, achieve only about five feet in height for males, less for females. Some of the older children at the gathering are already taller than that.
The parent's I talked to are wisely trying to take life "one day at a time." They are enjoying delightful babyhood days. Several families spoke of great family support. Two Grandmother's were in attendance. Both were Nurses, and had worked together for many years. We have a great network of supportive people in our PWS community. One of the parents had worked with a teacher of our son. People speak of "six degrees of separation," in St Paul it is only two!
Coping with this syndrome is not easy, but I was really encouraged to see how these new parents are finding the information and treatments to help their children. Medical advances are on the horizon.
I will be traveling to Orlando Florida to the National PWS Conference. It's a very hard thing to do in November, when the days are short and dreary, but I am willing to sacrifice. There should be medical updates revealed at the conference that will be of interest to people reading this.