For anyone considering lipoic acid...

[qannie47]

Just thought I'd share my experience with Lipoic Acid. A couple of weeks after starting this supplement, I noticed some facial/vocal tics in my ds. Then I ran out. Days later I saw his tics start to dissipate. Weeks later, I finally ordered some more and started him on it again. With in 24 hours, he started ticcing again facial/vocal. Stopped supplement. Tics stopped. Conclusion: lipoic acid for whatever reason caused tics in my son. He is not a "ticcy" child, except for flares and then it is more gross motor: endless karate chops and arm flailing...

 

So I share this because if it caused tics in him, it would probably be a disaster for any child whom has ongoing tics.

[LNN]

Not sure if you ever did 23andMe, but Alpha Lipoic Acid is not recommended for those with CBS mutations. Ironically, my DS, who does struggle with tics periodically, does fine on ALA and it does not cause tics in him. But...his CBS gene doesn't have any mutations. My DD on the other hand, gets very emotional and irritated on it - and she does have CBS issues.

 

So long way of saying I think ALA, just like NAC and MSM - can really help some and be "bad" for others. I don't think it should be avoided altogether, but if you see negatives, you can't just assume the negatives are due to Pans symptoms. Each supplement you use needs to be scrutinized and not just assumed it's good for everyone.

 

Glad you figured this one out for your DS!

[nicklemama]

My son tics when things get really bad and he has transient eye tics. He's been taking alpha lipoic acid for two years without any problems at all. I really think that 23and me test would be very insightful and help with med choices.

[Dedee]

I will just throw in that the 23andme has virtually saved us. Not just that alone, but that plus a little urine & hair testing and then using the information along with the genetic information to develop a personalized supplement plan for my daughter. She was severly B12 defecient and wasn't getting any better just by supplementing. Once we realized she was extrememly low in lithium (undetectable levels), and you must have lithium to transport B12 into the cells, we had literally "solved the mystery". A little lithium oratate supplement has been a miracle worker for her. This isn't the same lithium that is prescribed by physicians, but an over the counter supplement. Let me tell you, it is better than any prescreption I have ever gotten. She is better than she has been in 3 years. Not perfect, but so much better. We are still working on other issues. We have found that she has low thyroid and she tested positive for another TBI, but at least we have peace in our house. The raging, and tantrums are practically gone. She still has physical symptoms, and anxiety and OCD are ever present. However, we can work on it without throwing objects or screaming the house down. That is a major accomplishment.

 

So that's my plug for genetic testing anyway you can get it.........

 

Dedee

[sf_mom]

Alpha Lipoic Acid can also cross the BBB when the dosage is 200 m.g. or more per day. If your child has a heavy metals issue, Alpha Lipoic Acid would start to move the metals out of the brain and potentially increase symptoms from re-equalization and dumping of metals.

 

For us, in conjunction with understanding genetics/methylation/detox....... using the Spectracell Vitamin Testing has been invaluable. Spectracell looks at how the vitamins are utilized within the white blood cells. We knew our DD needed zinc as she tested low zinc, high copper not KPU. We started supplementing her with 30 m.g. of zinc per day (which is a lot). After about a year we did Spectracell testing for her again and as a result discovered the 30 m.g. of zinc wasn't enough. She is now on a much higher dose of zinc and her reading and attention abilities have changed DRAMATICALLY.

 

FYI: If you supplement with high doses of zinc you should watch copper/calcium levels to ensure they stay within proper range. High levels of Zinc can impact copper/calcium absorption.

Edited January 17, 2014 by sf_mom

[nitshel]

@Dedee - how did you check for Lithium levels? Which lab? Thanks!

[qannie47]

My issue with 23&ME is that I don't have the science background...I'm afraid that I will get these results and they will look Chinese to me. Or else I will try to supplement myself and make big mistakes. Can the layman make sense of the results and put them to good use?

Edited January 17, 2014 by qannie47

[LNN]

DeeDee - YEAH!!!!!!!!!! :wub: :wub: :wub: :wub: :wub:

 

Qannie - the 23andMe high dive isn't for everyone. You do need to bring your brain along for an adventure. But I'm an art major, with no interest or aptitude in biology, organic chemistry or genetics until Pans came along. But I've been able to finally understand some of it and from all I can tell, you'd be able to figure out which end of the elephant you were dealing with too. Best test I've ever, ever done on my kids.

[pr40]

qannie-- i have a different exp then LLM. our mutations are just too complicated for me. BUT I haven't made a mistake acting on the restuls or the mistake I did make was not a serious one. Go in small doses is the name of the game. Trial and error led to some benefits.

Also, Chinese, if you live in China, becomes over time more and more clear. so I too encourage you to get that piece of info

[trggirl]

We did the 23andMe testing this weekend after having the test in our possession for several months (life just got crazy). I have not been keeping up with the news. Will we receive results?

[qannie47]

Ok. That is encouraging. True, Chinese eventually turns into English from past experience.