Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Thanks for the infoSent from my iPhoneOn Jan 20, 2012, at 4:32 AM, "cindyjane100" <cindy@...> wrote: After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations. Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Hi, Never heard of it b4, thanks 4sharin this info. So what form of supplement do u use 4that? Any name/brand u can suggest? Sent from my BlackBerry by AT & T PYROLURIA After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations. Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Treated with various minerals & vitamins - but mainly Zinc, B6, EPO and Magnesium. > > Hi, > Never heard of it b4, thanks 4sharin this info. > So what form of supplement do u use 4that? > Any name/brand u can suggest? > > Sent from my BlackBerry by AT & T > > PYROLURIA > > > > > > After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations. > > Best Wishes, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 Is the supplements helping? Lois PYROLURIA After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations.Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Too early to say yet - but he is definitely more talkative. Doc says they will help - but first he has to detox heavy metals which can make things worse for a while. Will let you know how things go! > > Is the supplements helping? Lois > PYROLURIA > > > > After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations. > > Best Wishes, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Thanks! Keep me posted. Lois PYROLURIA> > > > After a very very challenging 12 years (my son is now 19) he has been diagnosed with Pyroluria. He has autism, psychosis and a learning disability. Pyroluria is simply treated with natural supplements and NOT drugs. This is why it is so little recognised by the medical profession. Had anyone else heard of this? It is diagnosed by the a urine test. Elevated krypropyrroles in the urine give a clear answer. This disorder strips the body of Vitamin B6 and Zinc, therefore compromising brain function. Other symptoms can be physical, such as stretch marks on the skin, poor enamel on the teeth and white spots on the fingernails. Pyroluria can cause the most awful aggression, mood swings and even hallucinations.> > Best Wishes, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 My 19 yoa son, who has high functioning autism was just diagnosed (today) with pyroluria. I read about someone else whose son was diagnosed with this either on this list or another I'm on. If it was this list, thanks for posting about it. Our doctor had never heard of it. And we had trouble because they sent the wrong kit for the urine test the first time and we had to repeat it. My son has increasing become more depressed, anxious, violent, had very manic mood swings, is almost never happy, and gets angry at the drop of a hat. He has one or two of the physical symptoms of pyroluria and all of the mental ones. The treatment is supplements of B6, zinc and maybe some other things like manganese. I am really hopeful that the supplements will be helpful. Basically, pyroluria is a genetic blood disorder where too much kp is produced. It binds the b6 and zinc and carries it out of the body in the urine. B6 is needed for serotonin production. If your child has these symptoms and they got worse in the teen years it might be worth your while to get the urine test. And if your child has been diagnosed with pyroluria I'm interested in any feedback or observations you have. Most of the websites out there are places that are trying to sell supplements so it's kind of hard to find unbiased info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 which lab conduct urine test for pyroluria? Savithri From: someone somewhere <lctodd@...>Subject: pyroluriaautism Date: Wednesday, May 16, 2012, 8:06 PM My 19 yoa son, who has high functioning autism was just diagnosed (today) with pyroluria. I read about someone else whose son was diagnosed with this either on this list or another I'm on. If it was this list, thanks for posting about it. Our doctor had never heard of it. And we had trouble because they sent the wrong kit for the urine test the first time and we had to repeat it. My son has increasing become more depressed, anxious, violent, had very manic mood swings, is almost never happy, and gets angry at the drop of a hat. He has one or two of the physical symptoms of pyroluria and all of the mental ones. The treatment is supplements of B6, zinc and maybe some other things like manganese. I am really hopeful that the supplements will be helpful. Basically, pyroluria is a genetic blood disorder where too much kp is produced. It binds the b6 and zinc and carries it out of the body in the urine. B6 is needed for serotonin production. If your child has these symptoms and they got worse in the teen years it might be worth your while to get the urine test. And if your child has been diagnosed with pyroluria I'm interested in any feedback or observations you have.Most of the websites out there are places that are trying to sell supplements so it's kind of hard to find unbiased info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 We used quest diagnostics. It requires a special kit. They didn't tell the nurse or send her the kit so we had to repeat it. ToddSent from my iPhoneOn May 16, 2012, at 7:40 PM, savithri kumar <savithrikumar2003@...> wrote: which lab conduct urine test for pyroluria? Savithri From: someone somewhere <lctodd@...>Subject: pyroluriaautism Date: Wednesday, May 16, 2012, 8:06 PM My 19 yoa son, who has high functioning autism was just diagnosed (today) with pyroluria. I read about someone else whose son was diagnosed with this either on this list or another I'm on. If it was this list, thanks for posting about it. Our doctor had never heard of it. And we had trouble because they sent the wrong kit for the urine test the first time and we had to repeat it. My son has increasing become more depressed, anxious, violent, had very manic mood swings, is almost never happy, and gets angry at the drop of a hat. He has one or two of the physical symptoms of pyroluria and all of the mental ones. The treatment is supplements of B6, zinc and maybe some other things like manganese. I am really hopeful that the supplements will be helpful. Basically, pyroluria is a genetic blood disorder where too much kp is produced. It binds the b6 and zinc and carries it out of the body in the urine. B6 is needed for serotonin production. If your child has these symptoms and they got worse in the teen years it might be worth your while to get the urine test. And if your child has been diagnosed with pyroluria I'm interested in any feedback or observations you have.Most of the websites out there are places that are trying to sell supplements so it's kind of hard to find unbiased info. Quote Link to comment Share on other sites More sharing options...
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