Twinmom Posted September 29, 2012 Share Posted September 29, 2012 (edited) On one of the recent threads on Jani, the child diagnosed with schizophrenia, someone mentioned the disorder pyroluria. I am interested in learning more about it. From what I can gather from the internet, it is largely discounted by the mainstream medical community but embraced by naturopaths and alternative medical providers. As I understand it, it is caused by a buildup of the waste products of red blood cells in the body and can cause psychiatric symptoms. Treatment includes high doses of zinc, B6 and other vitamins and can bring significant relief from anxiety, bipolar, schizophrenia and other disorders. Reading the checklists of symptoms, my DD (diagnosed with a mild brain injury, extreme GAD with panic attacks and a working memory deficit) scores high enough to be tested (actually, she has 25 out of 36 symptoms). I don't have a problem with treatments outside of the mainstream (we have actually pursued many treatments for her that are out of the mainstream with great success) but also don't want to put her through another test and treatment if it isn't real. Yes, I know it is just urine testing, but this is a highly sensitive child who freaks at the thought of any testing at all...especially if the end result means swallowing more pills, vitamins, etc. However, if this is real, it might be the answer to a lot of prayers. So, does anyone know more about this? Anyone have personal experience to share? Anyone have reason to believe this disorder does not exist? I am interested in all sides of the argument. TIA! Edited September 29, 2012 by Twinmom Quote Link to comment Share on other sites More sharing options...
Lisa in Jax Posted September 29, 2012 Share Posted September 29, 2012 I'm pretty familiar with pyroluria. It's a relatively inexpensive non-invasive urine test, but IMHO it might be simplest to just try the additional zinc and b6 for a while to see if it helps. If you'd like more information about it (such as where to get a reliable test, how to consult with a doctor who knows pyroluria and can recommend correct supplement dosages, etc.), email me. :) Lisa lkporter91 at gmail dot com Quote Link to comment Share on other sites More sharing options...
Nature Posted September 29, 2012 Share Posted September 29, 2012 My son had it, but after several years of vitamin supplements, he no longer has it. I do recommend getting the urine test for confirmation. The supplements should only be taken if your daughter shows a need for them. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted September 29, 2012 Author Share Posted September 29, 2012 I'd love to hear about where to get tested. Quote Link to comment Share on other sites More sharing options...
Lisa in Jax Posted September 29, 2012 Share Posted September 29, 2012 We used this company: http://www.pyroluriatesting.com/ They can also arrange for a doctor to review the results and give recommendations (for a fee). Lisa Quote Link to comment Share on other sites More sharing options...
Twinmom Posted September 29, 2012 Author Share Posted September 29, 2012 Thanks, Lisa! Does anyone know why the mainstream medical community seems to think this is a joke? I still don't know what to think about this...:confused::confused: Quote Link to comment Share on other sites More sharing options...
LittleIzumi Posted September 29, 2012 Share Posted September 29, 2012 Thanks, Lisa! Does anyone know why the mainstream medical community seems to think this is a joke? I still don't know what to think about this...:confused::confused: Mainstream medical community also thinks home births are dangerous and chiropractors are quacks and red dye 40 doesn't cause any behavioral changes. :glare: Quote Link to comment Share on other sites More sharing options...
Twinmom Posted September 30, 2012 Author Share Posted September 30, 2012 Good point... Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 30, 2012 Share Posted September 30, 2012 The problem is that the theory has not passed double blind studies. Article I saw something in a wikipedia article that said that he also attributed Down's syndrome as being caused by pyroluria too, but I don't know if that is true or not. I do a lot of natural therapies, btw. Quote Link to comment Share on other sites More sharing options...
DarlaS Posted September 30, 2012 Share Posted September 30, 2012 When we are under stress, we need more B6. It's also water soluble and difficult to overdose, so supplementing that is a pretty safe bet. Also what symptoms does this disorder have that are not symptoms of B6 or zinc deficiency? Zinc deficiency is pretty common by the way. Sounds intriguing, but I'm a pretty skeptical person... Quote Link to comment Share on other sites More sharing options...
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