Since KPU results in a deficiency of zinc and B6, I would hesitate to take a B supplement prior to the test. I don't know about GP's test. We used European Labs (aka Vitamin Diagnostics) http://vitamindiagnostics.com/
Go to the tab that says Labs/Specific Tests/Kryptopyrrol in urine then at the bottom of this tab, in the left, click on "forms".
European Labs says to be off of supplements - especially vitamin and mineral supplements for 5-7 days prior to the test. We stayed on abx and probiotics but stopped everything else. It showed us that the stuff DS takes does make a difference, as he didn't feel nearly as well by the time Day 5 w/o supps arrived. He was very happy to resume supplements after the test.
European Labs instructions say to do a 6 hr urine catch. Dr K recommends you do a 24 hr catch, as your levels of pyroles fluctuates thru the day. So he feels a 24 hr average gives a better picture. You need to have a urine container that measures the total volume collected- I don't believe it comes with the kit. You can get one at CVS or Walmart. Also get a small corrugated cardboard box to put the collection bottle into before you put the whole thing into the Fed ex Bio bag. Our original kit didn't include a box and Fed Ex returned my sample because of that. So we had to re-do the test and get a box the next day. The Lab swore no one has ever had a sample rejected because of this, but DS was not happy about having to do a second day of peeing into a bottle. So better safe than sorry.
If you want the specific instructions we used or a sample of the completed form, PM me your email and I'll send you copies of what we used.
I do appreciate the privacy issues and there are opt-out options when you register your kit. It's a personal decision and I'm not going to try to dismiss your concerns. But one additional step you can take is that once you get your 23andMe results, you can download your data and submit a written request to have 23andMe remove your data from their database. You can of course argue that they'd have backup tapes and information is never really gone. But it becomes a matter of how valuable with this information be to help your child's health long term.
When I go to a doctor's office as a new patient, I fill out a form indicating family health history. As medical records become electronic, it will be easier for a health insurance company to flag me for potential heart disease and macular degeneration simply based on my responses. Who's to say that they won't someday start asking people to take genetic tests in the spirit of "preventive" screening - and get your genetic info that way. Genetic testing can give you a statistical probability of developing a disease. But genes need to be switched on or off to lead to disease. Having a mutation does not doom you to having a disease. It means you have a higher probability than someone without that mutation. Are your concerns valid? Yes. But does having information that can improve health today and possibly prevent the development of a disease outweigh the risks of an insurance company gaining access to that information? It's personal decision certainly.
But here's a specific example. I found thru 23andMe that I have a CBS mutation. I never, ever would've guessed this from my readings. I tolerate just about every food you're supposed to avoid. Yet it's a factor in heart disease, which is rampant in my family. And it exacerbates issues with your NOS genes, which also contributes to heart disease and inflammatory diseases (which yes, I also have mutations). By treating my CBS mutation and focusing on controlling the amount of ammonia my body has to handle, I may be avoiding the stroke that made my grandmother an invalid.
My DD has an MTHFR mutation that increases her risks for "adverse events" from nitrous oxide/laughing gas with dental procedures. I personally think that's really important information as she faces possible extractions pre-braces.
By adjusting supplements based on genetic info, my DD is no longer bipolar. My DS is less angry and can focus better. These were changes I made after 23andMe results helped me stop guessing. We were able to stop at least a half dozen supps that were "wrong" for them. I was actually adding to their problems in some cases. Is a childhood freed from neuropsych issues worth some risk of a future big brother issue? For me, absolutely.
Thanks so much for the response. I made an appointment with Dr Latimer for September. If anyone has any suggestions in the Southeast of who we could see in the meantime, I would appreciate it.
