Tuesday, May 28, 2013

PWS Awareness Day #28: Supplements

Much of this is true for other health conditions, but in PWS, families utilize a number of therapies and supplements (or other treatments) to help alleviate some of the symptoms of PWS. I've spoken already about therapies, but supplements are crucial for many people. 

Things like Coenzyme Q10 (CoQ10), vitamins B6 and various forms of B12, L-carnitine, fish oil, vitamin D, creatine (yup, the stuff bodybuilders use), PharmaNac, and other homeopathic and other supplements. Forms might include tablets, capsules, liquids, and injectables. You experiment with dosages. You experiment with brands. You see changes (or not) in your kid after adding a particular supplement and you think you must be crazy, it's in your own head. But it's not. You talk with other PWS parents and you realize that THEY are crazy, too, it's not just you! :) The metabolisms and endocrine systems of people with PWS don't function properly, whether due to broken (missing?) pathways, trouble with absorption, who knows... so doesn't it make sense that supplements might help? Funny thing is that different supplements, in different forms, in different dosages, help different people... kind of like life. You figure out what works for your kid and that's all that matters. I have to say that I do feel like a mad scientist adding and dropping supplements and trying to hide pills, liquids, and powders in whatever food I can so that Dean will take them...

Currently, Dean takes iron, fish oil, B12 injections, vitamin D, L-carnitine, calcium, a multi, and... I think that's it. I can't even remember. I used to maintain meticulous records when he was a baby, and then I remembered that I have a life. :) We add in what works, we take away what doesn't. Works for me!


Anonymous said...

So interesting (as I've found all your posts this month - you're doing great things with this blog, really!!)

My DH relies on supplements to help maintain his health with a chronic illness. And I noticed your nordic naturals bottle in the mix? Have you been liking that brand? We've had A LOT of luck with them. Their Omega3/Vit D capsule for adults made a HUGE difference in my DH's abysmal D level (that numerous other supplements and prescriptions did nothing for) and our kids are on the NN multi and fish oil gummies and love them.

Just wanted to let you know that I have truly learned a lot reading your blog this month (though, I've been reading for years - found you on the nest) - Kerrin

Ali Foley Shenk said...

Thanks, Kerrin!!!
Funny you mention this because I was JUST saying to Bob that I think the NN fish oil is doing something different. We were using the Coromega packets and then I forgot that I had a NN bottle in the pantry that I wanted to use. I swear it's making a difference in Dean's clarity of mind and speech!

I've been thinking about being more serious about fish oil myself since I know it can help with mental health issues (I have bipolar, and even though I'm well-medicated, it can't hurt to have some fish oil in my life ;)).
Ali :)

Verna said...

This is cool!