Chemar Posted April 24, 2004 Report Share Posted April 24, 2004 FJ* from BrainTalk has posted a very informative and detailed account of Pyroluria induced tics. She is unquestionably an expert in this area, both by personal experience and by virtue of her biochemical training edited as link no longer works since the infamous crash of 06 that lost the main database for braintalk Link to comment Share on other sites More sharing options...
Chemar Posted April 30, 2004 Author Report Share Posted April 30, 2004 I am moving this up for the interest of newcomers to this forum Link to comment Share on other sites More sharing options...
Heather Posted April 30, 2004 Report Share Posted April 30, 2004 Chemar, Thank you for this post. I have phoned and ordered the urine test from Kansas and will hopefullly receive it in a few days. I figure with the low cost of it, it is worth finding out if it may be an issue with us. Heather Link to comment Share on other sites More sharing options...
Claire Posted April 30, 2004 Report Share Posted April 30, 2004 Heather, I really want to do this also. The only drawback is you must go vitamin free for 2 weeks prior to taking the test, according to a follow-up frm FJ. I want to take it for myself, but can't do this for my son mid-treatment, bummer. It is a great, cheap test for getting started. Claire Link to comment Share on other sites More sharing options...
Claire Posted April 30, 2004 Report Share Posted April 30, 2004 I just called the lab, and you only need to stop vitamins (B6 and zinc mostly) for 3 days before taking the test. Claire Link to comment Share on other sites More sharing options...
Mustang Carole Posted May 1, 2004 Report Share Posted May 1, 2004 Hi, I ordered a kit that arrived in just 3 days. The package insert states that they need a dr. name . We are seeing our Dan doctor so he can sign off on this anyway. This is just a heads up for anyone running into a problemo. This is my 2 cents. Mustang Carole Link to comment Share on other sites More sharing options...
Heather Posted May 1, 2004 Report Share Posted May 1, 2004 Chemar, Claire, Mustang Carole, Thanks for the tips for proper evaluation. I will have to check on the NDF since that is the only supplement that Will is taking right at this time. I remember reading the 3 day thing somewhere too, Claire, but don't remember where I read it. I will have to do some more reading in order to be prepared for a proper assessment. Mustang Carole, Do you know if the doctor's name can be a naturopath doctor or does it have to be an MD? The lady on the phone didn't tell me that when I ordered the test. There are some things that I read about pyroluria when researching it that makes me think that it could possibly be an issue for my son, as well as for myself and my daughter. Heather Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted May 1, 2004 Report Share Posted May 1, 2004 Heather, any specific reason why you feel your son may have pyruloria?? By the way, how are his tics now? Is he still on NO SCREENS? keep us posted... Link to comment Share on other sites More sharing options...
Heather Posted May 8, 2004 Report Share Posted May 8, 2004 EFGH, I am curious in finding out about the Pyroluria since my son, my daughter, and myself all have poor stress control and mood swings. Will's stress control isn't bad.....it is worse for me and my daughter. Also, there has been some alcholism in my family so it may be an issue for us. Will is watching minimal screens these days and still has minor tics but not enough to worry about. It is worth having the few minor tics in order to not cause a big upset over the TV. It is cold and rainy once again this weekend so it is sooo hard to completely remove the "screens". I can't wait for the good weather and the time when we are moved into our new home. Heather Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted May 9, 2004 Report Share Posted May 9, 2004 Heather Does your son get motor or vocal tics while watching TV? thanks. Link to comment Share on other sites More sharing options...
Heather Posted May 10, 2004 Report Share Posted May 10, 2004 EFGH, He actually gets both motor and vocal tics when watching. He gets a tongue rolling thing as well as a continual sniff and it happens while he is watching and then pretty much stops an hour after he stops watching. I am definitely convinced the TV is the main trigger for him these days. I do believe if we stopped the screens completely that his tics would stop. However, as I mentioned before, it is worth the minimal tics right now in order to avoid the upset over no TV. He has a few favourite programs and that is all he watches. Claire, I am truly thankful to you for this. At least I know at this point how I can control the tics and even stop them. I have always been fearful over the past few months that they would come back severely and I don't really think about that anymore as I feel if they started to wax again, I would just remove the screen completely. I also do believe that we are on the road to recovery. We are up to 4 drops a day with the NDF (max. dose for him is 5 drops/day). The next few months will tell for us. Heather Link to comment Share on other sites More sharing options...
Claire Posted May 10, 2004 Report Share Posted May 10, 2004 Heather, It is remarkable the impact of screens--I just know that there are others out there for whom it is also so binary. After you know the trigger, it does give piece of mind, doesn't it? Knowledge is power! I think people sometimes think that I want everyone to just cut out screens, but really I am just encouraging people to find out just how much impact they have (for those who even have an impact). Because once you understand the trigger, as a parent, you still have the COMPLETE ability to manage the trade-offs between happiness/emotional health and neurological health based on your best parental instincts and the clear guidance from your child. Like Jeff and the artificial colors--occasionally his kids get junk food (e.g. holidays). We went a year with some screens as we tried to find a balance and manage his 'happiness'--but in his case he got more sensitive and by 9 1/2 we had to remove all but the LCD monitor completely (maybe it is the age 10 peak thing?). But it was summer time and that helped a lot, as you have noted bad weather doesn't help. Did you ever try to have him watching a DVD movie on your LCD monitor to see if that reduced his reaction at all? My son watched 2 movies this weekend on our 15" LCD monitor (from across a well lit room, etc...) and even played computer (static game) on it and he had no reaction. Of course, after months with no computer games (his choice, since I always allowed 20 minutes every other day), my son is 'in the computer game mood' right now. Next week (after he takes this big math test he has been preparing for), I promised him we could try 30 minutes a day-everyday-of computer, plus 2 movies on the weekend to see what he can now tolerate with the LCD monitor. Of course he knows that should he exhibit symptoms, I will stop all for a week, then try again, with maybe longer times but still every other day, or shorter times daily. He is pretty excited. I am glad you son is doing well with the NDF! I need to find out more about Threelac before my son's next doctor visit. As you know my son too is coming of yeast/heavy metal detox, and I am sure it is helping--he gets retested next month. I really like that the food restrictions are less with Threelac. I want him to take the test first to see if the Capryllic Acid worked. But I may start on the Threelac sooner--I need to do the research for my doctor on it though. Claire Link to comment Share on other sites More sharing options...
Heather Posted May 11, 2004 Report Share Posted May 11, 2004 Claire, Yes, you are right. The peace of mind is a wonderful feeling. He has not tried the DVD movie on the LCD monitor yet but that is definitely an idea I will try. I am finding that when he plays computer games on the LCD monitor, he does not react the same as to the TV. I think his tolerance level is building right now since I am finding that even with the TV, his tics are not as strong as they have been. I am hoping this is because of the NDF and the detox of the metals progressing. I know what you mean about those games with levels. When I was reading your post I was totally relating to what you were saying as we have had the same conflict here when I have made him get off and he has spent hours getting to that level in the game. He is also invited to a birthday party sleepover this weekend and the invitiation says "Pizza, Popcorn and Movies" Ugh!!!!! All his triggers. I don't know the mom at all so I will have to talk to her about his tics. It almost seems a little far-fetched to say to her that these foods are triggers for him and "oh, by the way, the movie will be a trigger for him as well". These are times when I just want life to go back to the way it was when I could just send him off and not worry. All his friends are going so I simply can't say no. As I said above, even with the TV right now, his tics are minimal so I have to pray for a light reaction. Every summer we go to our cottage for 2 weeks where there is no TV/video/computer.... "no screens" period. I always enjoy our time there knowing our kids are finding others ways to spend their time. I am especially looking forward to it this summer more than ever before. My daughter is now saying even when she watches TV now, it is not as appealing as it was before. She is getting into the habit of enjoying other activities more. YEAH!!!! Heather Link to comment Share on other sites More sharing options...
Heather Posted May 11, 2004 Report Share Posted May 11, 2004 Claire, I also have a great article on Threelac that I will post later. I am on my way to work right now. Heather Link to comment Share on other sites More sharing options...
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