Health News & Other Resources
From time to time we post new information which we hope will assist caregivers. Not all information posted has been thoroughly researched and therefore all information should be discussed with a physician before proceeding.
HOLIDAY ALERT
Last holiday season, in spite of all of our warnings, we had two more unexpected deaths due to
food binging episodes that led to necrosis of the stomach wall and a
perforation (tear) in the stomach. We also had a recent death of a
young woman whose overeating binge was while she was hospitalized!
Typically, the person with PWS has been
slim, so there was no great concern about weight gain. Except for
the one woman with PWS in the hospital, the others were typically in
festive group situations with their families, where "everyone was
watching, which meant no one was watching."
Keep in mind that a
person with PWS, who is slim, does not mean they have total food control. Add too many temptations around, the lack of feeling full,
and the high pain threshold, and you have the potential of filling
the stomach dangerously full. Because we have many food binging
episodes of our children and adults with PWS – most not having such
disastrous results, we think there are probably other factors that
play into this life-threatening scenario, but until we have completed
our research on the study of deaths, we feel obliged to again
forewarn parents, grandparents, and caregivers of this potential
threat.
Another area of concern is the threat of choking in PWS which was recently documented in the following Pub-Med abstract. Data collected suggest that risks associated with choking are different in the PWS population compared with others. Potential causes of increased
choking in PWS include poor oral/motor coordination, poor gag reflex,
hypotonia, hyperphagia, decreased mastication, and voracious feeding
habits. We recommend implementation of preventive measures and
education for families and group home care providers for all
individuals with PWS including the Heimlich maneuver, supervised
meals, better food preparation, and diet modification to avoid high-
risk choking items. (c) 2006 Wiley-Liss, Inc.
PMID: 17036318 [PubMed - as supplied by publisher]
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=PubMed
PERMISSION IS GRANTED TO FORWARD THIS INFORMATION TO ALL WHO WILL
BENEFIT.
Advisory for Care Providers
Exploring the Dangers of Positional Asphyxia
Click here to link to this article
By Tina DiDino, REM Ohio, Health Services Coordinator &
Mary K. Ziccardi, REM Ohio, Administrator
Sensory Issues Across the Age Span Presentation (Presented at the 2006 OPWSA Conference, October 2006)
By: Janice M. Agarwal, P.T.
For more information about this presentation, please contact OPWSA at (416) 481-8657
Critical Information to take to the Emergency Room about PWS
Click here to open this important information
Research Advances in PWS (Presented at the 2005 PWS Conference in Mississauga):
Click here to open Dr. Wevrick's Research Advances in PWS
By: Rachel Wevrick, Ph.D.
Associate Professor and AHFMR Senior Scholar
Department of Medical Genetics,
University of Alberta
Medical Reports from IPWSO
Click on this link to download updated Medical Reports & Alerts: http://www.ipwso.org/medical_reports.html
This is a list of Reports & Alerts on the IPWSO Website:
- PWS Guide - 2005 : A Guide for Families & Professionals
- Acute Gastrointestinal Episodes can be Life Threatening
- Anesthesia and Prader Willi Syndrome
- Stomach Problems can signal Serious Illness
- Water Intoxication Alert
- Genetics - Chromosome 15
- Genetics of Prader Willi Syndrome - An Explanation for the Rest of Us
- Obesity - A Global Epidemic
Osteoporosis:
Osteoporosis in children under 16 years old has been observed. We would strongly suggest early testing of bone density as a preventative measure and supplementation with calcium/magnesium.
Growth Hormone:
Growth hormone treatment has proven to be a positive intervention in PWS. Current research indicates that growth hormone not only increases height but also helps build muscle tissue and increases energy in PWS. Growth hormone treatment is approved in Ontario for children with short stature. Treatment may also be available under the Trillium Program or through a Section 8 process. If you need more information about growth hormone and about these programs, please contact our office at (416) 481-8657.
Topiramate for Weight Loss:
Anecdotal reports have been received and some initial research taken place which indicates that this medication may be effective in helping with weight loss. Currently it is approved for treatment of epileptic seizures but is also being used to regulate mood swings. We are interested in hearing any other reports of use of this medication. Please email us at: opwsa@rogers.com if you have any experience with this medication.
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