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.
Well, we started Kian on creatine on Monday. I just gave him a quarter of a scoop (1/4 teaspoon?) in the AM. He seems to tolerate it well.
On Sunday (pre-creatine) we were practicing jumping and he was awkwardly jumping over backpacks. Kian can jump adequately, but he doesn’t normally choose to jump.
On Monday in PM, he spontaneously jumped higher and farther than I have ever seen him jump. It was quite odd and my husband and I both stopped our conversation with dropped jaws to have him jump again.
Tuesday nothing really, but he did well at gymnastics.
Wednesday (today), I spent most of the day with him. We had a picnic in the park and we were waiting to cross the street. He spontaneously jumped up and down over and over because he was impatient. I have never seen him do that before. Then, he had his best day at yoga ever and was pretty good at doing the tree pose. From there we went to gymnastics and he was really good at gymnastics. Then he had a temper tantrum and jumped up and down again like Rumplestiltskin. Then later in the evening he spontaneously launched himself off of the bottom step jumping with two feet and landing very steadily. He has never done that before.
He does not appear to be eating more food, but he does seem to be drinking a lot more water.
Now, about the temper tantrum. I think it was related to low blood sugar. He and I were having a good time and he really didn’t want to eat much. He had a small yogurt for lunch (trying to repopulate his gut after antibiotics) and that was it. He turned down all other food and played in the park and did yoga and did gymnastics and then melted down. The only way I could calm him down was to feed him. He refused food, but I basically forced/tricked him to eat almond butter with a bit of honey. That calmed him down and he was perfectly fine the rest of the day.
So, who knows… These changes are subtle, but I guess that I wouldn’t expect more than subtle changes at this point in his development. One other thing is that he is talking like crazy and seems to have more fluency. He is still working on articulation, however.
For the record. I have noticed great changes with CoQ10 (when Kian was 2 months old), carnitine fumarate (started at 2 ½), and now creatine (Kian is almost 4). Kian also gets omega 3’s, B vitamins, and a multivitamin. I believe that these help him, but I did not notice anything dramatic when I introduced them to his diet.
Last night I went in to talk with the gymnastics coach about my big girl’s upcoming meet (State!). The coach exclaimed that I must have sent Kian’s twin into gymnastics. She said that the little boy looked like Kian, but didn’t move like Kian or sound like Kian.
She apologized because she didn’t spot him correctly at first. She said that he was running down the tumble track and she was surprised by how coordinated he looked. When he got to her, he launched with two feet into his forward dive somersault, but since he didn’t know how to do it he sort of vaulted and landed on his hands with straight arms and then fell on his back on the mat. She said that she was expecting to help him scramble up the mat like before and then do a somersault. It never crossed her mind that he would be able to leap from a run so high with two feet in such a coordinated way and land on his hands with his arms outstretched.
And, she said, he did it over and over (with better spotting!). It wasn’t a fluke. And, she said, his stamina was the best that she had seen. She said he never seemed to get tired and was up for whatever new challenges she gave him. She said that normally when things click with a kid they get it right once and then it takes a couple of practices before they can consistently get it right. Not Kian. It was as if he had a different body.
I told her about the creatine and then I asked if she noticed anything else.
Yes, she said, he was talking up a storm – long and complicated sentences and she could understand him.
So, we have been working hard on his speech and there are many confounders for the speech issue, but the physical coordination, strength, and stamina happened right after we did the creatine. We didn’t do anything else. In fact, if anything Kian should have been weaker and uncoordinated because he hadn’t been doing gymnastics for a month (broken thumb).
So, how about it???!!!! Pretty cool, huh? I didn’t imagine it…