I missed a few days in our countdown, so I am doubling up today on topics… these go hand-in-hand anyway…
There are a myriad of diets that PWS families follow and it really comes down to what works for each individual’s needs and what the family can manage. Some do keto, some paleo, some Mediterranean, and the list goes on…
We follow more of the Mediterranean approach with our main goals being to monitor sugar intake, include good complex carbohydrates, lean proteins and good fats AND portion control. We do our best to eat very healthy, but it is not always easy, especially with other children in the family and busy schedules, but we try very hard to stay on track. There are many reasons this is so important, a few of them being that many individuals with PWS experience a slower metabolism, increased risk for insulin resistance and gastric motility complications.
Athough we monitor Siena’s belly like a hawk, she unfortunately has been hospitalized several times because of complications, most recently this past July 2020. The past two times we were alerted by her waking in the middle of the night in pain. It is common for those with PWS to have a very high pain threshold, which is true for Siena, so when this happened it was extremely alarming. We have had many trips to the emergency room and many hospital stays. Sometimes we come home with answers, but more often, we do not.
We have a team of PWS experts and fellow PWS families that walk this journey with us and we do find comfort in knowing that although PWS is rare and our community is small, we are not alone. And we could never do it without the support of our friends and family that help with our kids at a moment’s notice, do hospital “drops” of goodies to brighten our spirits, and are always in Siena’s cheering section.
I could go on and on with this subject, but I will end it here and share a link in case you would like more info. Dr. Scheimann from Johns Hopkins is our go-to GI expert in PWS and she has offered us guidance on many occasions. https://www.pwsausa.org/a-comprehensive-overview-of-gi…/
Attached is a photo journal of Siena’s hospital stay July 2020. If you would like to make a donation to Siena’s FPWR fundraising page, here is the link.http://act.fpwr.org/site/TR?pg=personal&fr_id=1732…xo