vvw1970

I want to share something I learned about a year ago, which may make an enormous difference in your life.

I found out from a friend about Pyroluria, which I was shocked to discover isn't all that well known, considering the fact that in psychiatric circles, the disorder has been known about since the 1950s.

In layman's terms, I will explain... Pyroluria is a blood condition. In our blood, we have Kryptopyrroles (nothing to do with Superman!). These pyrroles remove unwanted substances from our blood and are passed through the urine. When a person has too many pyrroles, they have Pyroluria. An excess of pyrolles means that they start removing additional substances from the blood, in particular vitamins and minerals such as B6, B12, Zinc, and Manganese. (B6 and Zinc are the most commonly lost)

The loss of these particular vitamins and minerals can exacerbate mental illness, autism, and ADHD as they are needed to maintain neurological balance. Excessive loss of these can lead to psychosis and this disorder is common amongst those with schizophrenia, bipolar disorder, depression, anxiety, autism and in some with ADHD. Alcoholism is prevalent in those with Pyroluria too.

Schizophrenia 27%
Depression 20%
Autism 20%
Bipolar Disorder 18%
General population 10%

A person can have mild pyroluria and not struggle much, but in times of stress, the disorder can "flare up" and production of pyrroles can increase, causing increased stripping of essentials from the blood, and thus causing further setbacks.

Some signs and symptoms: Common emotional and physical characteristics of pyroluria.
Little or no dream recall
White spots on finger nails
Poor morning appetite +/- tendency to skip breakfast
Morning nausea
Pale skin +/- poor tanning +/- burn easy in sun
Sensitivity to bright light
Hypersensitive to loud noises
Reading difficulties (e.g. dyslexia)
Poor ability to cope with stress
Mood swings or temper outbursts
Histrionic (dramatic)
Argumentative/enjoy argument
Much higher capability & alertness in the evening, compared to mornings
Poor short term memory
Abnormal body fat distribution
Dry skin
Anxiousness
Significant growth after the age of 16

It is not necessary to have all of these, and having several of these doesn't necessarily mean a positive for pyroluria, but the list is a good indicator of whether a test is needed.

The good news is as follows:
1. The test is simple and pain-free - a urine test.
2. The treatment is simple and pain-free - vitamins taken to replace what is being lost. These are not cheap, but it seems to me such a simple solution in our world of complex answers is a wonder to behold.

My son was diagnosed with pyroluria last year. Since he started on his vitamins I saw huge accelerated social development, reduction in anxiety, increased willingness to participate in the world around him, and less overall exhaustion. I believe this diagnosis has kick-started a new phase in his life where the world is beginning to open up and new opportunities are offering themselves to him.

We now have a light at the end of the tunnel and I can picture him potentially as an independent adult.

I have heard of some studies which are underway where they have tested children with severe autism (non-verbal), and treated those with a positive for pyroluria, with a vitamin regime. Apparently the success rate is phenomenal and some of these children start talking within two weeks of commencing treatment.

For further information I would recommend this site:
http://www.nutritional-healing.com.a...ding=Pyroluria

I would also recommend reading through some of the links at the bottom of that page - they lead to further research papers and very interesting in depth information.

If you have any questoins please feel free to ask.

lynn

vvw1970,
Thank you so much for sharing. I started my son on vitamins at three years old and I did see a marked improvement in his speech. I belong to a site dealing with many of the same mental issues, bipolar and we are very sensative. They have problems sleeping and with their skin, teeth, hair and energy. We find that are bodies seem to be lacking many of the vitamins and minerals that we need for cognative function. I am going to share this with our members. I personally do not like to go to bed because the next day it takes me so long to get back into the groove. I take many supplements and vitamines.
Lynn

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rainbows

This is new to me.have you heard of this carey?

vvw1970

A little thing that I left out... apparently in the USA there is a push by the Autism Association to have Pyroluria be part of the standard diagnostics process for Autism assessment.

Carey2

I had heard of it some long time back,but it has not been mentioned in relation to autism in anything I have seen before.

It certainly makes a lot of sense and one thing many notice is the fluctuation in abilities of many ASD people,this could well account for that fluctuation.

One thing I did note however is that several sources say that this is more prevelant in females and all girl families.

It is tested by a simple urine sample so it should perhaps be something that is checked early on as it would save so much grief in a childs life if this was part of their problems.

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Peace. It does not mean to be in a place where there is no noise,trouble or hard work.
It means to be in the midst of those things and still be calm in your heart.