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s/o genes - has anyone chosen a path for helping their kid this way ...


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#1 SKL

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Posted 20 October 2017 - 01:13 PM

I am finding this gene stuff fascinating and confusing and weird.  Using Promethease, I find a never-ending list of stuff, mostly bad, but of uncertain relevance.  But a few things stuck out.

 

Some of the information rings true for one or both of my kids (and me) in terms of personality and intelligence.  That's great for my happy kid, but for the other, apparently she is genetically destined to be stressed out, not empathetic, not brilliant, but a fighter.  There are also some warnings in there - like, she may be more likely to get addicted to stuff, and if she becomes a smoker, it will probably damage her lungs a lot.  There is a lot of inconsistent information about the risk of diabetes and heart disease and autism.

 

There is also information about how each person will react to different drugs, which is interesting, but there's no way I'm going to remember any of it if my kid ever needs to take medicine.

 

Then there's the MTHFR stuff I already knew - so we need to take folate and B12 and D3, but not sure whether a "special supplement" is needed vs. the stuff we're buying (whole food vitamins).  There is so much information out there.

 

Has anyone used this information to formulate a practical plan you could actually implement?  How do you go about it?  What kind of medical professional do you work with?  Or do you use an online tool that isn't snake oil?

 

For me personally, it says I have a risk of thyroid disease, which is interesting since my sister has thyroid issues.  I have never suspected anything thyroid before, so I guess I will just pay attention and see if there are any concerns.  I don't know if there is anything you can do about thyroid risk.  The other thing is I have a risk on both sides of bad eye problems - probably the horrible thing my mom has been dealing with for years (and her grandma went blind).  Ugh.  Again, no idea if that is anything I can prevent.  Maybe plan to possibly be blind in my old age ... learn braille ....


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#2 onelittlemonkey

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Posted 20 October 2017 - 01:20 PM

Who did your testing? 23andme? And you just upload the results to promethease? Sorry to hi-jack, but I think I’m going to do the same thing with ds that you’re doing with your girls.

#3 eternalsummer

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Posted 20 October 2017 - 01:27 PM

the personality stuff sounds a little snake oil to me, but if genes determine intelligence, propensity for aggression, etc. I guess they can determine other brain functions too.

 

 

I did find the fact that many of my extended family have addiction issues helpful - I know I can be prone to addiction, so I am more careful about it.  If you have adopted daughters who don't have the benefit of seeing how their relatives lives played out with regard to health, addiction, etc., I can see how at least having genetic info about those kinds of things would be helpful for them (but maybe not at age 11).



#4 SparklyUnicorn

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Posted 20 October 2017 - 01:36 PM

Nope.  I think we don't yet know the usefulness of such information. There are other factors at play other than genetics and we don't know to what extent genetics plays a part verses those other factors. 


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#5 Innisfree

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Posted 20 October 2017 - 01:43 PM

No experience to offer, but I'm very interested in this too.

I guess my question is how do the practical benefits balance out against any potential negative consequences of having this information. I'm thinking specifically about difficulty getting insurance down the road, but there might be other issues. There are so many unknowns about what society may do with this information in the future.

But information about managing health would be immediately useful. I'm very curious about the personality and behavioral components, too. I'd love to hear more about this.

#6 Heigh Ho

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Posted 20 October 2017 - 02:46 PM

My dr used the b12 bloodwork and some other tests to figure out my issues. Genetic testing was just the confirmation of source of my illness. We used the results to add some b complex in and discard all foods with added folic acid. Bloodwork confirmed the effectiveness of the methylB12, as did my energy level. The cyano did nothing for my energy level and a little for blood levels. Dosage can be adjusted with bloodwork. D supplementation is similar. I don't take folate because I get enough via diet when folic acid isn't present. Work with knowledgeable doc, there are gi issues that should be ruled out.

One of my college aged dc noticed he needed to take my path. He was not getting enough greens, but felt terrific when on his weight lifting supplement. Reading the label, it had an adult dose of methylb12.

Edited by Heigh Ho, 20 October 2017 - 02:49 PM.

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#7 onelittlemonkey

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Posted 20 October 2017 - 02:52 PM

Question: if you get this done through 23andme or elsewhere and you take the results to your Dr, won't the dr put this in your file that insurance will see? I want to avoid that.

#8 SKL

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Posted 20 October 2017 - 03:50 PM

Wow. I think I just finally learned how to multi-quote!

 

Who did your testing? 23andme? And you just upload the results to promethease? Sorry to hi-jack, but I think I’m going to do the same thing with ds that you’re doing with your girls.

 

We did 23andme just to learn about heritage, but Promethease can quickly find and access your 23andme data.  They charge a $5 fee to do that.  I don't know whether you can upload it yourself for free or not.

 

Question: if you get this done through 23andme or elsewhere and you take the results to your Dr, won't the dr put this in your file that insurance will see? I want to avoid that.

 

This is a good question.  I was also wondering about having it on record that you may have a likelihood of developing mental disorders.  I was thinking about employment implications.  Theoretically it's all private, but ....


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#9 nixpix5

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Posted 20 October 2017 - 04:56 PM

the personality stuff sounds a little snake oil to me, but if genes determine intelligence, propensity for aggression, etc. I guess they can determine other brain functions too.


I did find the fact that many of my extended family have addiction issues helpful - I know I can be prone to addiction, so I am more careful about it. If you have adopted daughters who don't have the benefit of seeing how their relatives lives played out with regard to health, addiction, etc., I can see how at least having genetic info about those kinds of things would be helpful for them (but maybe not at age 11).


Nope, not snake oil at all. Actually pretty darn easy to predict with genetic information. Remember our personality is our brain wiring and neuro chemistry and while you can make do some tweaking of thr risk with nurture, nature is alot more prominent then many people realize. My genetic college training was one of my favorite things I ever studied. You can alter personality in animals by doing knock out genes (or knock in) and we have gained a wealth of information from genetic mutations in people that show some thing similar.

It is what makes social programs so challenging. I always here people say that if this or that program were implemented we could stop the cycle of abuse, poverty, crime and so forth. That is true to some extent yes, but sometimes we are seeing these familiar patterns due to genetics. One look through research that looks at identical adopted twins reared separately, or babies adopted at birth and so forth can illustrate some of this too. Some of my favorite studies are adopted embryos because those were grown inside the adoptive parent and not the biological parent and yet, the personality, IQ, struggles in life and so forth often closely mirror the bio parents.

Now what can we do with all of that? Scare ourselves to death? Be looking for proof of it at every turn. It can stress some people out. I do think as they hone it we will see more personalized medicine and the ability to start earlier in our care of ourselves based on our profiles.
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#10 MedicMom

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Posted 20 October 2017 - 05:13 PM

Promethease told me I am lacking the compassion gene.

This came as a surprise to no one.
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#11 SKL

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Posted 20 October 2017 - 08:55 PM

Right, also the "warrior vs worrier" - based on our sample of 3, it is pretty accurate.



#12 J-rap

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Posted 20 October 2017 - 09:08 PM

It's all very interesting.  My dd tested through 23andme and also Mayo, and got a lot of the same results.  So, I do think 23andme is quite trustworthy.  We were then able to upload her genetics onto the Promethease site and that gave even more information.

 

What will we do with it all?  Not much.  We'll pay attention to the red flags, and those are the same things Mayo red-flagged.  Other than, it's really a toss of the dice.  She eats really, really well, exercises, and takes very good care of her body.  There's really not much more that she can do.  It's known that environment and other factors can play a part in genetics and what you're more at risk for.  So, we'll be mindful of things she might carry a higher risk for, but not stress about it.  

 

 



#13 madteaparty

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Posted 20 October 2017 - 09:36 PM

My plan is not to do any genetic testing and soldier on 😂

#14 Liz CA

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Posted 20 October 2017 - 09:40 PM

The knock in / out gene technique is a fascinating experiment. We also know that neurogenesis begins in utero and no two brains are identical - not even those of monozygotic twins. Deciphering our unique, particular genetic makeup can be medically helpful. Knowing trends in personality may be helpful in interactions and identifying strengths / weaknesses.

I think the one thing I'd take away from it is the medical aspect and try to counteract any predisposition to avoidable illnesses. It is a little like handing you the genetic blueprint of your body.

 

ETA: Does this test reveal anything about telomeres?


Edited by Liz CA, 20 October 2017 - 10:01 PM.


#15 Crimson Wife

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Posted 20 October 2017 - 10:11 PM

Everything I have read is that the consumer testing is more hype than reality for the most part and that is why the government made 23andme stop providing health analysis information.

The genetic testing my special needs child has done through her doctors involved genetic counseling by a specialist to help figure out the clinical significance. With the hearing loss, the results clarified that she needed a cochlear implant. With the neurological syndrome, we did a bone age scan and when that showed anomalies, we were referred to an endocrinologist.


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#16 ErinE

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Posted 20 October 2017 - 11:29 PM

Nope, not snake oil at all. Actually pretty darn easy to predict with genetic information. Remember our personality is our brain wiring and neuro chemistry and while you can make do some tweaking of thr risk with nurture, nature is alot more prominent then many people realize. My genetic college training was one of my favorite things I ever studied. You can alter personality in animals by doing knock out genes (or knock in) and we have gained a wealth of information from genetic mutations in people that show some thing similar.

It is what makes social programs so challenging. I always here people say that if this or that program were implemented we could stop the cycle of abuse, poverty, crime and so forth. That is true to some extent yes, but sometimes we are seeing these familiar patterns due to genetics. One look through research that looks at identical adopted twins reared separately, or babies adopted at birth and so forth can illustrate some of this too. Some of my favorite studies are adopted embryos because those were grown inside the adoptive parent and not the biological parent and yet, the personality, IQ, struggles in life and so forth often closely mirror the bio parents.

Now what can we do with all of that? Scare ourselves to death? Be looking for proof of it at every turn. It can stress some people out. I do think as they hone it we will see more personalized medicine and the ability to start earlier in our care of ourselves based on our profiles.


And yet there is evidence that environment can switch "on" and "off" alleles. I am wary of promoting genetic determinism as there is still so much evidence that gene switches are influenced by environmental factors. In the end, we can't look at someone (or read his or her genetic profile) and decipher who she/he is going to be.

#17 Liz CA

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Posted 21 October 2017 - 12:05 AM

And yet there is evidence that environment can switch "on" and "off" alleles. I am wary of promoting genetic determinism as there is still so much evidence that gene switches are influenced by environmental factors. In the end, we can't look at someone (or read his or her genetic profile) and decipher who she/he is going to be.

 

I am not sure it can be used as a predictive but rather as a clarification of what we already know or suspect and perhaps shed some light on puzzling issues.
 


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#18 ErinE

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Posted 21 October 2017 - 02:28 AM

I am not sure it can be used as a predictive but rather as a clarification of what we already know or suspect and perhaps shed some light on puzzling issues.


The post I quoted said "easy to predict" which might be true across a population within deviation boundaries, but would not necessarily be predictive for an individual without many heavy qualifications added.
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#19 madteaparty

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Posted 21 October 2017 - 07:56 AM

And yet there is evidence that environment can switch "on" and "off" alleles. I am wary of promoting genetic determinism as there is still so much evidence that gene switches are influenced by environmental factors. In the end, we can't look at someone (or read his or her genetic profile) and decipher who she/he is going to be.

Siddhartha Mukherjee writes about these things and if I recall, he has stated that for himself he has opted not to do general genetic testing, much for these same reasons. He has schizophrenia in his family per an old New Yorker article.
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#20 Heigh Ho

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Posted 21 October 2017 - 10:09 AM

Genetic testing helps more than giving you what ifs, like the BRCA gene presence. It shows mutations. These aren't things that turn on and off, but mutations that don't allow critical chemical reactions to take place and result in severe disability or early death if untreated. Read articles about Kevin Strauss's work,there are plenty for lay people.
The cure is often quite cheap...developing a supplement like methylb12, for example and allows normal life just like insulin for a type 1 diabetic. With genetic testing, people with mthfr mutations are finding answers to lifelong limitations. It will be years before the science is done and the primary physician screens dc. For me, it was cheaper to go with a commercial service than thru insurance or health lab. It is screening that should have been done when I was a child, and had I been treated it would have saved about $250k in medical to treat the damage the mutations caused.

#21 Heigh Ho

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Posted 21 October 2017 - 10:18 AM



One needs to ask if it is ethical to withhold this info from patients. For ex, we know premenopausal breast cancer patients are often low on vitamin d. We know that can be caused by mutations, but we don't routinely screen the patient for the mutations nor have we determined level of supplementation needed. Having screening for wellness seems to be out of the question. How many moms need to die before genetic screening is used?

Edited by Heigh Ho, 21 October 2017 - 10:21 AM.