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Help please. Bad side effects on pyroluria treatment.

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Unread 07-15-2010, 08:38 PM   #1
Molly50
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Default Help please. Bad side effects on pyroluria treatment.

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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Unread 07-15-2010, 11:52 PM   #2
mrsD
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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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Unread 07-16-2010, 01:08 AM   #3
Molly50
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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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Unread 07-16-2010, 06:56 AM   #4
mrsD
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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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Unread 08-28-2010, 04:58 PM   #5
Garnet_LDN
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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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Unread 01-26-2013, 05:33 PM   #6
jlane343
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Quote:
Originally Posted by Molly50 View Post
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
For myself to much P5P makes me hyper to the point of insomnia. I had to find the right dosage for myself which is around 30 mg of P5P daily.
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Unread 02-03-2013, 09:02 PM   #7
jeaner
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Smile pyroluria

Quote:
Originally Posted by Molly50 View Post
Hi,
Hi, I was worse for a while also and found out that you need to take b complex and zinc at least 10 hrs apart or they combine form a compound and are depleted. This happens with pyroluria.
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
hope this helps . I am sure it will
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Unread 08-05-2013, 08:38 PM   #8
klunge123
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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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