>Andrew & I took Siena to the Prader -Willi Clinic at the Children’s Institute in Pittsburgh on Friday. We met with Dr. Cynthia Smith – while she was very helpful, we were disappointed to find that the clinic is actually more of a crisis intervention center and an in-patient facility treating people who are in more advanced and/or uncontrolled stages of Prader-Willi Syndrome. Our hope was that we would walk away with a clear cut plan and know who to contact next, etc…. What we have realized is that we must do our own research and find the right doctors on our own. Contacting other parents and the PWSA will be more valuable to us, since many of our doctors have not had much experience with PWS.
Key things Dr. Smith told us :
She said Siena should be the poster child : )
People with UPD variation of PWS tend to be thinner, but may have more behavioral issues.
It is VERY important to establish a routine for Siena… so that she knows when she is eating throughout the day and what she will be eating at all times. Healthy and fresh foods – ALWAYS! Nothing “light” or “fat free” – as natural as possible. She is sending us the diets the in-house patients are on…
There should be no unexpected treats… if PWS kids know that on the 100th tantrum you will give them a cookie, they will put you through the first 99 tantrums to get it.
The patients at the clinic are very active – they take them swimming three times a week.
There is a PWS conference in Orlando in November that she highly recommends.