Saturday, July 6, 2013


Supplements are a part of all PWS families.  For some kids supplements provide great benefit and for others not so much.  No one really knows why some kids respond so much better than others or why one supplement 'works' for one kid and another one doesn't.  Ayden Jane is a big responder to supplements.

I have been reminded of that lately.  I have had a 'momma knows' feeling about Ayden Jane for a while.  There has been a lack of stamina and energy.  Not enough to ruin her days, but a noticeable difference to me.  When we did the last round of labs we checked her thyroid thinking maybe that was it.  Nope.  I also thought that maybe it was time to go to B12 shots instead of oral.  Nope.  And nothing else really stuck out either other than the eosinophil counts which may be messing a little with her gh.  Not enough to satisfy my hunch.

I decided to look at Ayden Jane's supplements and dosages...  B12 was taken care of by the labs.  Fish oil, well it's good for you but not going to rock your energy world!  Creatine is something that she has been on off and on so I put her back on it with a good dose.  It has never been an energy booster, but I know that it helps her build muscle...  Iron is dosed appropriately.  Vitamin, check.  Lastly, carnitine.  Aha!

I ran the math to see how much Ayden Jane was getting compared with how much she should be getting.  Basically, her dose was so low that she might as well not have been taking it.   After emailing a bit with Dr. Miller we settled on a dose which combines Carnitine Fumarate and Acetyl carnitine.  I had the CF already so I jumped on that.  Today I added the Acetyl. 

Early results make me say BINGO!  I need to tweak amounts and combinations and timing during the day over the next week or so, but I am really pleased with the increase in stamina for Ayden Jane.  Also, her words are not getting so stuck.  Now it could just be that she had a couple of good days, but only time will tell.  I'll let you know!

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