What is the benefit of genetic testing?

[LNN]

I've had the exact same experience as DeeDee. I too was giving some things I thought were helping but were actually working against us. I wish I could go back to all my old posts and edit them about how great tryptophan is for anxiety. Based on our genetic tests, it was very helpful for my DD but not for my DS. If I could get my money back for the dozen bottles of supplements that now sit in my shoebox of shame, that alone would've easily paid for the 23andMe tests for the whole family.

[Guest]

I have done the 23andme for all 3 of my children. What it did for us was to help us determine what supplements to use that were actually beneficial instead of guessing based on what had helped others. What helps one persons child is definitely not what will help my child. Many of the things I was giving my kids was completely wrong based on their profile. I knew my son had issues with moods, but now I know that some of the supplements I was giving him were actually working against him. So for us, we can put our money into the correct supplements instead of guessing. For $99, it was totally worth it.

 

Dedee

That's good to hear! I ordered the 23andme last week. Hope my doctor can decipher it b/c I can't.

It is very frustrating to just experiment with supplements, the genetic testing sounds better.

[Dedee]

I wouldn't count on your doctor being able to help you with it. I have gotten guidance from great people on this board (Thanks LLM!) and from lots and lots of research. Dr. Amy Yasko has a book that is a free online download. It is an Autism book but it discusses each SNP and how to treat them. Of course, you can order all the supplements from her site which she recommends. I didn't do that. I did get a few from her website but mostly I got the general idea from her book and from the NutriGenomics website and decided myself which supplements were the most important. There is no way I can afford all the supplements suggested. It's only been a couple of weeks for my daughter and we are starting to see some improvements. Nothing earth shattering, but still moving in the right direction. As with everything else that is involved with PANDAS / PANS, this is mostly up to you. Best of luck!

 

Dedee

[Orion]

The most valuable thing is that 23andme provides you with the raw data of all 900,000+ snps which you can download to your computer.

 

I then went to SNPedia and used Promethease to further analyze the 23andme results. (I utilized the $2.00 feature 1/2 way down the page to speed up the program download.) I feel like I got a more nitty-gritty analysis through the Promethease report. I also really like the SNPedia wiki for further research.

 

Firefox also has a SNPTips add-on that links to SNPedia, so whenever you come across a snp in the form rsxxxxx it is highlighted, and by scrolling over it with your cursor, you can see what your 23andme result is. [Just a word of caution though, the SNPTip add-on needs to be toggled Off when looking through your Promethease report as there is a script conflict.]

[Hrosenkrantz]

We did genetic testing with our DC -- for us it was generally a waste of time, but relatively not a big expense for us compared to other waste of time interventions we tried. It was done in our doctors office, a simple swab on our DC's gums several times (and i imagine if your child is down this road, they have endured more unpleasant and invasive medical interventions than that). My insurance covered it, but it was INCREDIBLY expensive -- i think the cost (covered by insurance) was $7400 (the company was Lineagen) which boggles my mind. Since nothing came up from it, i cant say it was useful.