Posts Tagged ‘Understanding Prader-Willi Syndrome’
PWS: An Introductory Video by Patrice Carroll
Patrice Carroll, Latham Centers’ Manager of PWS Services, is recognized worldwide for her expertise in Prader-Willi Syndrome care. Patrice has filmed many videos on PWS which have been highlighted on the blog – today’s feature is an introductory piece on PWS (re-run). “I have personally witnessed, and we at Latham Centers have seen the incredible…
Read MoreTIP of the WEEK: Summer Safety Tips
Always use sunscreen. Even on a cloudy day our kids are susceptible to sun burns. Fair skin, temperature regulation issues, and high pain tolerance make sun exposure dangerous. Sun burns hurt and itch making skin picking much more likely. Be mindful while swimming. Our kids lack stamina and often tire easily and without warning. Keep swimming close…
Read MoreTIP of the WEEK: Nail Care
Healthy nail care is an often overlooked aspect of life with PWS. Many of our kids have behaviors that involve picking at, and in some cases, completely removing, their finger and toe nails. Open and cracked (and absent) nails opens our kids up for infections that can be difficult to treat. If your child has…
Read MoreTIP of the WEEK: Making the Most of Summer
Transitioning from school to summer vacation can bring some unique challenges for families living with PWS. While typical children look forward to the days of leisure and lack of routine, the child with PWS can find this change highly stressful and, at times, frightening. Getting in to a new routine as soon as possible is…
Read MoreTIP of the WEEK: PWS Awareness Month
During the month of May we formally celebrate the extraordinary people in our lives that live with PWS. Use the last few days of this month to spread awareness and highlight the struggles, accomplishments, and truly unique aspects of the people living every day with a syndrome that so few know about. Interesting Facts about…
Read MoreTIP of the WEEK: PWS Awareness Month
During the month of May we formally celebrate the extraordinary people in our lives that live with PWS. Use this month to spread awareness and highlight the struggles, accomplishments, and truly unique aspects of the people living every day with a syndrome that so few know about. Interesting Facts about PWS: 1.) People with PWS…
Read MoreTIP of the WEEK: The Home Visit
When your child is in residential placement, holidays and school vacations can be challenging times. After a few days you start to wonder how you ever did this even though your child was home with you for most of their lives. This is normal. Don’t expect a perfectly smooth ride. House rules and school rules…
Read MoreTIP of the WEEK: Staying Calm
Staying calm in the middle of a crisis is a skill that takes many years of practice but the rewards are endless. When you are calm your child will be able to deescalate faster. Seeing your strength will help them maintain their mood better and will, in some cases, avert a bigger incident. That is…
Read MoreTIP of the WEEK: In the Thick of It
The weeks between Thanksgiving and Christmas can be the most challenging time of the year for kids and families with PWS. Typical families experience holiday stress, but families with a child with PWS experience something that can barely be described. Parties, school celebrations that always include food regardless of how much we ask that it…
Read MoreTIP of the WEEK: It’s Not Just About the Calories
Many of you have asked that I talk in greater detail about getting through the holidays, specifically about how to explain to family members (grandparents in particular) about their child’s diet. How many of you have heard the following- “It’s only one cookie“, “It’s a special day“, “He’s thin“, “You don’t need to worry about…
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