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Post by AustinsMom on Mar 16, 2004 23:00:15 GMT -5
People have been asking how the Pfeiffer treatment is going, and I've been saying things are good. But tonight I had a clear picture of how much....
Ever since I can remember, if Austin gets startled, he gets angry. Sometimes so angry he cries, which he doesn't do often. It's like his "fight or flight" response gets activated, and let me tell you, he's going to fight and not run. He was in bed tonight and I was a finishing putting the laundry in the dryer, then going in to tuck him in. There was just a small light on and he had the curtain by his bed pulled; he didn't hear me come in and when I pulled back the curtain to get on his bed, I scared the bejeebers out of him.
I of course immediately said I was sorry and patted his back and quickly realized....he's not screaming at me....he's not shoving my hand away....he was not angry, just startled. I of course made a big deal out of it and I gave a HUGE bonus of $50--not real ones, but the behavior program ones we've been talking about. I don't know who was more proud, him or me.
YEA!!!!! IT'S WORKING!!!!
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Post by catatonic on Mar 17, 2004 9:05:16 GMT -5
This is really great news!!! I'm happy for both you and your boy ;D ;D ;D
Are you on the "full" treatment regimen at this point, or still phasing things in?
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Post by Kimmers on Mar 17, 2004 10:08:51 GMT -5
Austinsmom-
My son does this same thing! If it happens when he is playing around with his dad then he doesn't do this (him and his dad will alot of times play a game to see who can scare eachother the best) but if he is in his room alone and all of a sudden you enter unannounced, he goes berserk. He'll do the same thing, start hitting or kicking right away. We used to kind of laugh because of how bad he would startle but then we realized how angry it made him and we quit immediately-that only escalates it! This has gotten better some but I was wondering what your thoughts were on what causes this kind of reaction and what part of the treatment you think might have made it better.
I am very happy that you are seeing great results with the treatment. I wish we had the kind of money to go see them or someone like them but it just isn't possible. I know it would be worth it but the option just isn't there for us. I hope you will keep posting on the positive things you continue to see!
Kimmers
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Post by JohnBark on Mar 17, 2004 10:44:12 GMT -5
Austinsmom, that's wonderful news. I can't wait for our appointment at Pfeiffer. I'm really hoping this will help answer all of the unanswered questions and problems we have and are having with my DS. You both should be proud!!!!!  ;D ;D ;D ;D ;D |
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Post by AustinsMom on Mar 17, 2004 22:12:55 GMT -5
catatonic, We are still doing the first month's vitamins, in addition to the epsom salt baths 2-3 times a week. We start a round of diflucan this week, and add the next vitamin in about 2 weeks.
kimmers, that's a tough question to figure out what I think the cause is, but I'll give it my best guess. I don't think it's the high histamine. This causes low levels of serotonin and dopamine, neither of which I think would cause this reaction. Also, when he was on a B vit with folic acid that would make this worse, what we saw was that he was argumentative.
I don't think it's the yeast either, so I'm guessing it's the heavy metal toxicity. He is very low zinc, high copper and high with other miscellaneous metals that are not good for you (arsenic, etc.) These are strongly linked to hyperactivity and behaviour disorders.
The treatment for that is C and E to chelate, B6, p5p, zinc, and biotin--and avoiding copper. We'll add more later to this regimen. Have you ever had a hair analysis done on your child? That might let you know if this could be a problem for them. We've had one done every couple of years since Austin was 2, and it's always been a problem, but this is the first effective treatment we have found.
JohnBark, Thanks for the encouragement. I hope you get the answers you need when you go there.
As an addendum to yesterdays post: This morning he got up and asked if we could do his Great Leaps program (a reading fluency thing we do, but one that he'd rather put off till the last possible moment) BEFORE he went to school. After spending weeks talking him into doing it, and him always wanting to " Do it later", I almost fell over from shock. His teacher also commented today that he had a "great attitude today"--I believe it may be the first positive thing she's said about him this year. I'm just hoping I don't wake up and find this is all a dream......
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Post by Kimmers on Mar 18, 2004 10:18:20 GMT -5
Austinsmom-
So you think that the B vitamins were causing the reactions? I noticed you said B-6 is used to lower the toxic levels-does this mean that B-6 is "good" but the other B's are "bad?" Also, what is p5p? Do you give the other vitamins and things as separate supplements, such as the biotin, or ar there formulas that contain all of these things that can be given? (Sorry to bombard you with all of the questions!)
I have never had any kind of testing done with my son. No hair samples, urine, stool, nothing. I have been wanting to have it done but haven't thought of a way to approach my doctor so that she will see it as necessary. He was dx'ed by a psychologist and his doctor has absolutely no idea that he even has a problem. I am afraid to just plop him in her lap and say, "Here, he has ADHD/ODD and I want you to test him for this and this and this..." I'm afraid she'll think I have gone looney!
How would you go about it? Just curious...
One more question, I went to your link to the Pfeiffer center to check out the symptoms of high metal toxicity but couldn't find anything. Could you direct me as to where that is listed on their website?
Thank so much!
Kimmers
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Post by AustinsMom on Mar 18, 2004 22:12:19 GMT -5
Kimmers, Here is the link for the Pfeiffer research: www.hriptc.org/research_studies.html There are several that relate to metal overload. The research papers talk about what vitamins they use in chelation. With the B vit, my ds has high histamine levels and that is aggravated by folic acid. I know I've read posts by catatonic that says research shows some kids don't tolerate B6 but do well on B1 (I think that's the other one) and vice versa. I don't know if this relates to histamine levels or not, but for my son, I think that's the problem with the B 50 we were taking. We are now taking B6, and biotin and inositol with no problems. I don't think your regular doctor would do the testing anyway; I don't think traditional medicine embraces this. Austin's environmental medicine dr. that treats his allergies is the one that tested him first. I believe there are naturopaths and chiropractors that will do this testing. You just clip hair and send it off to the lab (Doctor's Data is one lab). Pfeiffer had us wash his hair in baby shampoo for 4 days before the test, and use no other hair products. I bet if you called around you could find someone to do it. Or check out Doctor's Data and see if you could send it in yourself. I don't know if this is a problem your child has, but I don't think it would be a bad idea if you could figure out a way to do the testing and rule it out. I feel so relieved to feel like we are doing something to alleviate the problem. Hope you are able to find some clues to piece together to answer your questions. |
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lisle
Full Member
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Post by lisle on Mar 23, 2004 13:39:15 GMT -5
Austin's Mom:
Glad things are going so well. Just thought I would add my two cents as a Pfeiffer mom also. When Pfeiffer chelates they do it very very slowly and carefully with the antioxidants and biotin and try to correct the copper imbalance with the zinc dose that is given and having you not add copper to his diet in certain foods (chocolate is big). Your compliance sounds great, and I am so glad you are seeing results already. I don't think Austin is getting rid of copper or you would see WORSE behavior temporarily. (By the way, for anyone else reading this, zinc and B-6 shouldn't be given indiscriminantly, though, so if you aren't a patient of Pfeiffer, please don't just increase it a lot.) You also, as I recall, purchased a distiller for your water, so basically you are lowering his copper intake and not making him more full of histamine (undermethylating him) by giving Folic Acid in the B-complex. So glad Austin is feeling so calm!
lisle
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