KPU- Vitamins

[philamom]

I had to start my daughter on a multi with iron on Monday, so will have to hold off on the KPU urine test for now. What vitamin/minerals could I supplement with until I test for KPU. zinc? B-12, B-6? DD is 68lbs.

[JuliaFaith]

Just looked at son's protocol from a year ago and doctor had him off all supplements for 5 days before KPU test.

 

On the testing information sheet it says 'do not take vitamins especially B's and minerals.' Also says 'exposure to normal daily stresses is needed (no stress-avoidance or rest).'

 

Hope this is helpful.

[philamom]

I'm sorry- was not very clear in my post. I am not doing the urine test at this time. But I would like to start on some vitamins/minerals that would sort of help treat KPU (assuming it's an issues). I don't want to give Core until I do the urine test (hopefully next month). Dd's GI doc thought she needed to be on a multi with iron right away - that is why we are holding off on the KPU urine test for now. thx

[LNN]

Core has a blend of zinc. B6, molybdenum, etc in certain ratios and in specific forms that are supposed to be "best" for pyroluria. I asked our LLMD about using something other than Core to save a little $ and he really felt Core was the best thing for this point in time. So if you're looking to supplement with zinc and B6, I'd go ahead and use Core over something else. You work up to 4 capsules but you could just do one cap for now. With what she's got going on, it's very possible to extra zinc/B6 would help her.

 

You can get methyl B12 - all the docs seem to feel you can't get enough B12. But DH had a weird sensation when his integrative put him on it and he stopped after a few days. So who knows. My family never seems to follow the script or be "normal".

 

There's a site http://www.nsf.org that lists vitamin brands that have been certified. Helpful for picking brands once you get to that point.

[philamom]

Thanks.

 

I've tried a couple times in the past giving her a B-12 (5,000mcg) supplement. Even with one tablet she would herx, so then I would abandon it.

 

If you recall, last week I couldn't do the KPU urine test because I accidentally was giving her Vitamin water. I don't usually purchase this much (because of the cost and sugar content) but I've noticed when she drinks it, she seems to be better (with PANDAS like symptoms). I never even looked at the ingredients until I checked to see if it would interfere with the KPU test. Well the ingredients are vit C, b3=b5-b6-b12, taurine-zinc-chromium. Maybe suggestive of KPU? Or just lack of vit/minerals in general? hmmm

Edited January 12, 2012 by philamom

[LNN]

It sounds like you're really leary of using Core without a dx. What are your concerns?

 

If it helps any, take a look at the ingredients in Core and compare it to Vitamin Water

http://stores.homestead.com/BiopureHealingProducts/Detail.bok?no=80

 

Note - this list assumes you're taking 4 capsules. When you start and for the first month, you only take one and then build up as tolerated every few weeks, sometimes pausing or backing down for a time. So when you look at the doses, divide by 4.

Also remember to add in whatever amounts of zinc et al may be in the multi, but realize the zinc and B6 are probably different forms than what's in the multi.

[philamom]

Yeah, it probably is a good idea to just buy the Core and give one capsule a try. thx