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Vitamins, Nutrients, Herbs and Supplements For discussion about vitamins, vitamin deficiency, herbal remedies and other supplements. |
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07-15-2010, 08:38 PM | #1 | ||
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Hi,
I'm new here and am really hoping someone out there can help me. My 7 year old son and I have recently been diagnosed with pyroluria. The vitamin treatment has been helping me enormously. Unfortunately it's making my son worse. I have been taking a mix of P5p Pyridoxine hcl Manganese Vitamin E Magnesium Zinc I started my son on a quarter dose of the same but within 24 hours he was aggressive, angry, threatening and completely out of control emotionally. This sort of behaviour is so out of character and really scary. It also made him even more anxious than usual - often anxious normally, but this was off the scale. Our doctor suggested we take a break for 5 days then start again. I started again on just a mix of pyridoxine and mg with pretty much the same result. He was fine for a day but then lost control again. His copper levels were fine, but he has quite low histamine levels. He is also taking enzymes with breakfast and dinner, not sure if that's relevant or not. Everything I read tells me that b6 at these doses has no side effects. But it seems to be creating the very behaviours it's meant to correct, . And because of the pyroluria I feel it's important to find a way to make this work but it's so difficult to see him so distressed. Any input anyone can give would be greatly appreciated. Thanks, Molly |
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07-15-2010, 11:52 PM | #2 | |||
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Wisest Elder Ever
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Hi, Molly.
This is one puzzling situation and probably the doctor is the best avenue for you. But I would like to know what your son's symptoms are without the vitamin treatment? I've never liked the manganese portion of this protocol, and manganese is capable of causing aggression. There are papers on it at PubMed over the years. Was your son's test results just above normal, or higher? Since you are the best evaluator of his behavior, I'd trust your instincts. Some people get hyper on B-complex. This might be a factor. How about this.... just give the magnesium portion for a while, say a month. See how he reacts to that. Most hyper kids, are calmed by magnesium. Also I'd like to know the dose your doctor suggested. Just to be sure it is not too high, etc.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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07-16-2010, 01:08 AM | #3 | ||
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Thank you so much for your prompt reply. I'm going crazy worrying about him. Our doctor is hours away and not terrifically helpful. I've learned more reading your posts than talking to him.
As for my son's behaviour before the vitamin protocol. When he was 5, he was diagnosed with Asperger's, however a lot of the behaviours that led to this diagnosis disappeared when we reduced dairy, colourings and preservatives in his diet. The main problems that remain are pervasive anxiety and inability to deal with stress. When stressed, the Aspie traits return - inflexibility, rigid thinking, sensory sensitivities, meltdowns. Lots of fun stuff. My research then led me to pyroluria, which explains a lot more about why he behaves the way does. But the miracle cure just isn't happening yet. I wouldn't say he is more hyper on the supplements, maybe a bit noisier. It's just the emotional extremes. If he's upset he's hysterical, if he's angry it's "I'm going to punch/kill you". It's all or nothing. And he's never been this angry and aggressive before, emotional, but not ever threatening. Anyway the capsules contain zinc picolinate 25mg p5p 25mg pyridoxine hcl 125mg manganese gluconate 3.75g vit e 50mg ascorbic activity as Mg ascorbate 150mg mg ascorbate 11mg The adult dose is 1 capsule, twice a day. The doctor suggested I start my son on the same dose. (I don't thinki so.) I started him on a half capsule, morning and night, and he went nuts. Dropped it to half capsule, once a day, he still went nuts. I too was a bit concerned about the manganese. That's why I tried the pyridoxine hcl and magnesium on its own. The anger wasn't as bad, but the emotional hysterics were. It's all very interesting, but definitely beyond my knowledge to figure this puzzle out. I really appreciate your taking the time to help. Many thanks, Molly |
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07-16-2010, 06:56 AM | #4 | |||
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Wisest Elder Ever
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Even at a quarter this is still alot of B6.
If your son is not high in the testing, but only borderline, then he might be very reactive to the high B6 levels. He is only 7 after all. Small children don't react to things like adults do. As a mother myself, I'd not continue something that upset my child like yours is showing. Pyroluria does wax and wane to some extent too. Have you ever had him tested for lead levels? Since he responded to dairy, have you considered gluten too? Many Aspie/autistic children respond the the GFCF diet. This is a good resource: http://sites.google.com/site/jccglutenfree/
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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08-28-2010, 04:58 PM | #5 | |||
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Junior Member
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A few people can not take P5P, sorry I don't remember the details just made a note to self that not everyone is able to take this form of B6, although it was said to be rare. It's not rare if you are the one that is affected.
Do you have someone who does muscle testing for the supplements your son is taking? If not you might want to learn the method, lots of free tutorials on the web that are simple to learn, although some say it is best to have someone test you that is impartial. I find that I can test myself when I am feeling calm and centered, neutral. It's worth a try. Good Luck! Janet |
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01-26-2013, 05:33 PM | #6 | ||
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02-03-2013, 09:02 PM | #7 | ||
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08-05-2013, 08:38 PM | #8 | ||
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New Member
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I would check the dosage of the manganese gluconate, 3.7g seems very high to me. *admin edit*
might help you explore some other avenues. Another thing to consider is how much meat you consume, if you dont eat meat you just cant get enough iron, vitamin b 12 etc etc. The plant forms are seldomly absorbed, animals do all the hard work by making the vitamins and minerals as bioavailable as possible. And its foolish not to reap the benefits. Hopefully i have been of some benefit, all my knowledge (I have much more to share if you want it) comes from my battle with schizophrenia through nutrition. Last edited by Chemar; 08-05-2013 at 08:49 PM. Reason: sorry but no direct or indirect linking allowed for new members |
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