Creatine
Creatine monohydrate is a nutritional supplement that has long been used by bodybuilders and athletes for performance enhancement and is something I've been considering for a while as a possible intervention for PWS because it not only improves muscle function but also brain function. Creatine plays an important role in mitochondrial function, so the recent revelations about mitochondrial impairment in PWS have moved it towards the top of my research priority list. There have been some small trials of its use for mitochondrial disorders that present with encephalopathy and myopathy such as Kearns-Sayre syndrome and MELAS (mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes), with some reporting benefit and some finding no benefit.
The BBC has an August 2003 article about creatine for general readership - Creatine 'boosts brain power' http://news.bbc.co.uk/2/hi/health/3145223.stm
Here is an excellent, more detailed article for general readership - http://www.scq.ubc.ca/?p=194
For those interested in directly accessing the research, this link will provide a gateway - http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Search&db=PubMed&term=creatine+monohydrate+mitochondrial&tool=QuerySuggestion
As the BBC article notes, there are reports of creatine supplementation affecting blood sugar levels and it also may have effects on kidney function. Those issues need further investigation before any suggestions about its possible use for PWS can be made. However, I would be very interested to know if anyone has tried it or has heard of its use for PWS. Also, creatine, creatinine and/or creatine kinase (CK aka phosphocreatine kinase or creatine phosphokinase) levels are often checked for such things as evaluating muscle and renal function, so I would be interested if anyone happens to have lab results for those. (Mandy, I think the muscle enzyme test will probably include CK.) Finally, there was concern at one point while my friend's baby was in the NICU about her renal function. That apparently is no longer a problem, but in terms of evaluating creatine's appropriateness for PWS, I'm interested in whether renal function has been an issue for others with PWS.
