Claire

Hi Karen, If you haven't noticed ANY change, then I suspect this just isn't a trigger for her. That is good news, really, there are still plenty of other things to try, and one less restriction! I would go ahead and reintroduce screens, then just pay attention (without her being aware of scrutiny) to see if she tics more. Otherwise, I would rule this out for now and go on to other things. Diet seems to be the next biggest--we have a thread on this one. I will update the TV/computer thread for your efforts. Keep trying, but I would move past TV at this point--it has never taken anyone here this long to see ANY improvement. Claire

This is wonderful jc!! Absolutely wonderful! Since you aren't registered, I can't click back and see what worked for you. Somehow I remember your discussing chinese herbs or accupuncture? I know you listed your vitamins, but can you share what you believed helped your child, e.g. just the supplements, or avoiding foods/artificial ingredients, homeopathy, air filter, etc...? First of all, something as minor as you described isn't OCD in that OCD must impact their lives for 1-2 hours a day and cause some interference with their life, according to everything I have read. But I assume you mean "OCD-like" vs tic-like. I don't know how to tell for sure, but if he doesn't have other OCD-like tendencies (symmetry etc...) I would probably classify it as complex tic-like, though it sounds minor enough to not be of concern (more like a 'habit'), and certainly not noticeable. I hope you keep us posted again after you have cut back on supplements--I will be interested to hear how that goes. Many of us hope to cut back on supplements someday also. Claire

Hi Dara, I tried again, and got the same message re your personal mailbox being full, how odd! I will just respond here instead. I am really happy to hear this that your son's tics are settling a bit! Maybe the Nystatin is starting to help? So many things it could be, I know... Cool that you are going to Pfeiffer! I agree that the money is better spent on Pfeiffer than a second Great Plains test at this point. You already know that yeast/bacteria is a problem and are treating for it. We are just doing the culture because the nystatin didn't get rid of it all. I sure wish these doctors would get together so we didn't need to go to multiple doctors to get all the tests done. I wouldn't have gone to Pfeiffer if our DAN doctor would have done the same tests (methylation, MT promotion, labcorp.com zinc etc blood test) but then Pfeiffer doesn't do all the ones that he did (food sensitivities, etc...), so it is actually mostly complementary. I too think (hope!) that between a DAN doctor and Pfeiffer, you will have covered all the bases. When you go to Pfeiffer please ask about their MT promotion therapy. It is supposed to help if their are food sensitivities, yeast and metals. If you continue with the zinc supplementation, you may be able to start MT promotion right away if they agree it is suitable....they won't do MT promotion until the zinc levels are normal, and their test uncovered a zinc deficiency that our other ones didn't. Claire

Dara, I tried to return your PM but your mailbox is full. You need to delete some old messages... Claire

Karen, Welcome, glad you found your way here! The most recent 'replies/posts' go to the top of the forum. As people start new 'threads/topics', the older threads that don't have new posts fall off the top page and tend to go unnoticed by newcomers. 'bumping' a thread just means hitting the reply button on that thread, even though you don't have anything new to post--because it will automatically bring it back up to the top page. First, your 11 year old daughter sounds like a real trooper to agree to a no screens week and be willing to go longer! Really, if results are there, you and your husband should be able to see them. I assume that she didn't have screens (e.g. TV or computer work) at school during this 'test', as it can't impact results. My only other question is whether Easter itself brought on a disproportionate amount of junk food with artificial ingredients. Did she have the commercial jelly beans and colored candies and chocolates? In any case, going a few more days with no screens certainly can't hurt because then you will know for sure. However, if you haven't already done so, do you think she would be game to go this coming week without any artificial ingredients, e.g. food colors, preservatives, MSG, artificial flavors. Effectively this means no packaged food. This is also a trigger for some. Normally I say don't do this with no screens for the first week, so as to not confuse the results, but you have already done a week with no screens, so okay to try others. If you are lucky enough to see improvement, you can figure out later which one was the bigger factor. There are common food sensitivities too, but they can be tested for, and that might be too much to deprive her of her favorite foods too. For artificial ingredients, there are usually equivalent options--especially if you have a Whole Foods or Wild Oats nearby. If you are already doing this, please let us know. I think it is great you are trying to find the right doctor--we have ALL been there with mainstream doctors not on the same path as we are. So much of what we are seeing here is that for the vast majority of us, we have needed a doctor because part of the healing involved supplements and we need some guidance there. If you haven't read this thread, please scan it and see how many of us are facing the same immune issues. For better or worse, it takes a specialist to order the tests and guide us on treatment. But many of us guide our specialists to encourage them to run certain tests, because it seems that we are finding we have certain issues in common more than others. http://www.latitudes.org/forums/index.php?...?showtopic=1166 There is a book called 'Children with Starving Brains' on autism that lays out a story that seems to apply to many with tic syndromes. The way much of this works is that certain things compromise the immune system (metals, strep...). One thing that can be impacted is 'gut' health and nutrients aren't properly absorbed. The lack of these nutrients can have substantial neurological effects. That is an oversimplification of one path. The point is that so many here have issue in common that we are starting to think it is a wide concern. Now a number have seen tremendous improvements. For the rest, it is a work in progress, and time will tell. What we believe is that a dedicated parent can help to solve the puzzle in a methodical way. And of course the key to this is to do it with loving acceptance of your child, so that they don't feel they are under a microscope. Claire

Hi Kim, I wouldn't worry about an artificially high yeast reading from high sugar intake. If your son has yeast issues, sugar can make it worse certainly, but if he doesn't have yeast issues, then there is nothing for the sugar to make worse. The important thing is just to know whether or not there is overgrowth. The actual level is not critical in terms of what treatment to do. As for the rash, certainly that is a possibility re the metals or some detox effect. I have been thinking how to get past the rash issue and am going to try epsom salt baths and a loofah. The salts draw the moisture and thus the toxins out of the body, so it should help the skin become an excretory organ. You might consider epsom salt bath for your child. If you put in just a cup, you can't even tell it is there--though I think 2 cups is supposed to be ideal. The fact that your son got a rash brings the question--are his bowels pretty regular? I will let you know if increasing the fiber resolves my rashes (I now have 2 areas of rashes instead of one). In the meantime, switch to Ivory Snow or some 'natural' detergent from Whole Foods or whereever and Basis soap for sensitive skin. They can make a huge difference if the skin is sensitive to itching. Things like Tide are just torture if your skin is itchy. And turn down the heat in the bath--more tepid than hot, as hot makes itching worse. Central heating can aggravate it, maybe a humidifier too? Thanks for the amalgam link. I had read just recently that dentists are prohibited from mentioning any risks of mercury amalgams, and was completely shocked. I chew xylitol gum 1/2 the day on the computer and now I read that chewing can release more mercury. Ugh. Claire

EXCELLENT article on metals excreting from the body through 3 main pathways, liver, kidney and skin. It explains why I was getting rashes after introducing glutathione lotion recently (better absorbed than oral) and being lax on my fiber. It also explains why my son's sweat smells like metal lately (no kidding), also after introducing glutathione lotion recently. (we both switched). I need to get my amalgams removed soon! (For newcomers, both my son and I tested high for mercury. His recent test shows normal, but it was a blood test and I am not convinced. His symptoms are definitely improved). http://www.toothwisdom.net/detox.html This is just an excerpt, worth reading the article. "The major organs of detoxification are the liver, the kidneys, and the skin. The liver is the major player in this scenario. One does not have a healthy liver unless one has a healthy colon. Because most Americans live in urban areas, their livers are under constant stress from the toxins in the air, water, and food that most urban Americans are exposed to. Add to this burden the mercury from fillings and soon the liver can be overwhelmed and congested. The liver dumps its toxic waste into the colon for removal from the body, in fact, 85% of the mercury ordinarily is excreted through the feces. If the colon is not healthy, particularly if one is constipated and incapable of moving the feces efficiently out of the body, the mercury can be reabsorbed from the colon and recirculated back into the body. This makes the detox process long, often difficult and frustrating. The best way to get a colon healthy is to have ozone colonics (see web link). This, in turn, greatly assists the liver by allowing the liver to purge toxins so it won't become overloaded with toxic waste. The kidneys usually account for the other 15% of the body's mercury excretion. Mercury usually is complexed to large molecules when it is processed for excretion but the kidneys can't handle molecules that are too large. Many detox agents are referred to as chelating agents and are large molecules to begin with so this singles them out for liver processing. When detoxing for mercury it is important to drink large amounts of pure water. When neither the liver nor the kidneys are capable of handling all the mercury, the skin often is called on to excrete toxins through its pores. This may cause rashes, itching, and eruptions such as zits since once the toxins escape through the pores of the skin they sit on the surface of the skin and act as an irritant, thus the itching and rashes, etc. The mercury also can be reabsorbed back through the skin's pores if it remains on the surface too long. By this discussion it is easy to see that mercury detoxification can be quite problematic." By the way, I post on mercury, but Dr. Walsh says the 3 worst metals are cadmium, lead and mercury, not in that order. I don't know if the pathways for each are different, e.g cadmium is closely correlated with zinc. --Claire

bumped for newcomer who sent me a PM. Claire

Marina, Or maybe his nervous system just needed the screen removal to settle itself--remember how in the beginning, new screen exposure set him off again? Well, time has passed now. Or maybe (did I post this too you?) he has more immune assaults (antigens)during your spring and summer, and now that it is your fall, he has less to react to, so his 'bucket' isn't so full and his tolerance is higher. In any case, this is probably the best problem you could have, right? I am really happy for you! Especially for your son at his age and with his interest. Are you doing the same number of hours as before? Tolerating some CRT exposure (and more than a couple of months ago) is different from tolerating several hours in a day as he may have done in the summer. Presumably, he still has school and homework etc. I would propose this: The screen removal allowed his system to settle, and thus the tension was way down. His brain didn't have that constant irritant/stimulation and retrained itself to function without that stress/tension. He is happier, life is good. Thus with the reintroduction, his 'baseline' is very healthy again, so he can tolerate more. I think of how a healthy person might stay up all night and do fine if they have been getting plenty of rest, but when they aren't rested, that same all nighter can be exhausting. Example: My son had sensitivities to a ton foods. They said--go 3 months without them and reintroduce and he will be fine. (Okay we went 5). Well they were correct. He no longer tests sensitive to them and seems to have them with no issue. (And he still had lots of yeast in his gut, so it isn't that his gut healed. Though it could have been the reduction in mercury...) So I wonder if this applies to screens too, sometimes--why not? The body gets a break and then it can handle it again. I also think of pushing on a bruise--it hurts and will keep hurting! Let the bruise heal and you can touch the same area with no pain. Or maybe just the well-lit room is enough that the CRT screens isn't a trigger for your son. Maybe he is less sensitive than some--it is all a spectrum of course. Of course, this is speculation--it is too early to tell. But I sure hope you keep posting so that we can all learn from this. For efgh, her son got less sensitive over time with no screen exposure. For Jean, her son got more photosensitive over time, even with no screen exposure. So I am back to my party line, which is that: Every child is different, every path to their best neurological health is different. This is why so many doctors think tic syndromes aren't treatable. But the reality is, if the parents keep trying, you have a good shot at finding the right path for your own child. Another theory is that the continuing absence of milk and preservatives means that his system is less taxed and is healing, and he can thus tolerate more. I guess my best input is to just keep your log as you move forward. If his tics return (hopefully they won't) try the no screens again. I would just watch for the 'bucket' (accumulation) thing and the insidious slow rebuilding, e.g. the screen sensitivity returns because of either a cumulative effect, or because other things in combination means his system is being overtaxed and simply becomes more sensitive again. Your journey is still continuing. You still need to reintroduce games, to go a few months with screens, and experiment with foods, to see what his tolerance is like next (Australian) spring/summer. I think the only 'danger' is discounting (forgetting?) that screens was ever a factor--just in case you are in a situation where you are playing detective again this is important to have in your arsenal. Really, congratulations though, this is excellent news, Marina, I am very happy for you! What a nice Easter present! Having less screen restriction is a major advantage in our techy world today--especially middle school on. I count my blessings that we too now have more tolerance for screens now. But there is no doubt in my mind that removal of screens in our house for a time both was an important part of his healing, and certainly got us to no tics faster than any other path. (This is not true for everyone, again, it is very individual!) Claire

Hi Lulu/Lisa My DAN doctor says to start with one dose of probiotics a day during a round of antibiotics (again, 2 hours after the antibiotic), then to build to 2 doses if your child can tolerate the one dose just fine. The one you have sounds just fine, my son weighs less than that and ours had more. Just watch for symptoms and adjust accordingly. For some supplements I dump 1/2 a capsule and close it up again. For some, I guess even one dose can cause yeast die-off and symptoms, thus his caution. I was told that probiotics during antibiotics is a good idea, whether or not there is a yeast issue. In fact, our mainstream Ear Nose Throat doctor said they are good on a daily basis for everyone. I know some do yogurt. We have milk issues so we do the capsules. The yogurt required so much sugar (whether natural or no) for our family to tolerate it that I figured it wasn't for us anyway, since yeast thrive on sugar, our doctor told us to minimize all kinds. Houston Nutriceuticals has an enzyme called No-fenol that Dr. Houston says is good for killing the outer layer of the yeast. Your welcome, and thanks for the kind words. Happy Easter, and I hope things improve. Claire

Lulu, As for tics skyrocketing from amoxycillin, then I would have 4 things I would suspect: 1. The amoxycillin isn't the right antibiotic and isn't correcting the strep, which can make things worse of course. Is your child's throat getting better? 2. The amoxycillin is mixed with all that artificial flavoring in a liquid and your child is sensitive to it. 3. The illness in general is making the tics worse. (But I don't see how it would get worse AFTER the antiobiotics were started, if this were the case. 4. The round of antibiotics just killed more good flora and yeast levels are way up. Sorry I can't narrow it down for you, but to prevent/deal with #4 I recommend nystatin and probiotics during any round of antiobiotics, if yeast is an issue. If you don't know, then it is tougher to assess--but I would ask your doctor about capryllic acid (non prescription) as an antifungal--I read it doesn't harm a healthy digestive track. Of course the probiotics are taken 2 hours after the antibiotics, or the antibiotics will just kill the good bacteria anyway. Claire

Lulu, This is such a tough one, because it is controversial even among the alternative doctors. The urine challenge seems to be one of the more accurate tests, but it involves taking DMSA to pull out the metals for the test. Dr. Walsh says that DMSA also pulls out zinc (it pulls out all metals indiscriminately), which makes things worse since so many kids have low zinc. Our DAN doctor says your antioxidants need to be up first. Also, DMSA is notorious for causing yeast issues, so Dr. McCandless says make sure the gut is healthy before DMSA. However, the jury is out on whether one DMSA usage for the challenge is enough to do harm. Well, the DAN consensus recommends DMSA in general, so one session shouldn't be bad right?? Andy's child did the urine challenge with no issues. My neighbor did DMSA for one day and ended up with horrible yeast. I think Jennifer's child was fine with the urine challenge. I asked Dara once if her child's symptom increase coincided with the urine challenge, but I think there were so many variables that it would likely be impossible to tell. But the other mercury methods aren't great in terms of false negatives. Hair tests are notorious for false negatives, since this same children don't excrete metals, so it doesn't show in their hair. Our doctor did the blood test instead, and since it was positive, we could feel comfortable treating. The issue is more what to do if the blood test is negative, given that it could just mean the metals are settled in the tissues. Dr. Walsh didn't like any of the 3 tests, but said he looks at copper and ceruloplasm, but I have no idea what he was talking about. Some say measuring mercury in fecal matter is good. I would like us to do a urine challenge someday, but want to wait for the antioxidant levels (per Spectracell.com's 5000 test) to be higher, and for the zinc levels to be back in line, per the labcorp.com test. And for yeast to be lower. I will likely test it on myself first. This is the order we did, based on our DAN doctor and later Pfeiffer's input. Blood test for metals (Great Smokies) www.spectracell.com for antioxidants www.greatplainslaboratory.com OAT test for glutathione reading and yeast www.labcorp.com for serum levels of zinc If blood test is high in metals, then the supplementation from the 3 tests should mobilize the metals. (Usually selenium is added, even if no deficiency exists). If the blood test is normal (maybe false negative), and the 3 tests show deficiencies, then supplementing to treat those deficiencies will still mobilize metals if they are an issue as part of whatever healing they do, so you don't lose time. Our doctor says the antioxidants are the bodies natural way of eliminating medals, thus his preference for them over chelation. Dr. Walsh said on his site that he thinks the chelation success is due in great part to the coinciding use of antioxidants. So, unfortunately Lulu, this is very complicated and because of all the disagreement among doctors, you and your doctor need to make the call! My post in my METALS, GLUTATHIONE, etc.. thread (plus the chelation thread) has links with the trade-offs for you to get a fuller story. Again, someday I want the urine challenge--from my reading, this appears to be most agreed upon as the best method. I want to make sure that the lower blood level readings don't mean that the mercury has just settled into the tissues. Since symptoms are better (less photosensitivity) On the other hand, I don't feel the need for chelation because Pfeiffer and our DAN doctor both say our current approach (zinc, selenium, Vitamin C, and glutathione lotion) all will pull out metals. I would done the urine challenge already, if the blood test was negative and our DAN doctor recommended it. Also, if this was the only test my doctor believed and would begin treatment based on, then I would do it. But even the urine challenge can give false negatives, especially the first round when other metals tend to get pulled first. Claire edited: I recommend doing a google search on "urine challenge" + mercury + "side affects" (or maybe dangers) Here is something to add to the other link I posted on comparing the methods: http://216.239.63.104/search?q=cache:YKpYq...2B+serum+&hl=en "Everyone mentions the challenge, or stimulated, urine test for mercury, although your specific techniques vary. What about other methods of detecting mercury, plain urine, packed red cells, serum, or hair?" I try to honor copyright and not repost the detailed response--which favors the urine challeng, but I found this interesting: "As for hair, we have found clinically – if there is even a small amount of mercury showing up in the hair - a provocation test invariably tests positive." Also, this was interesting--some here have done these methods: "Does anyone rely on electrodermal testing or muscle testing? "Dr. Rozema: It is my understanding that these two methodologies are very operator dependant and could lead to spurious results. Some people say that in the hands of a skillful operator, the results can be quite accurate. It needs to be compared to challenge urine testing for mercury. "

Hi Alison, I am sure there is no consensus. I know Pfeiffer is big on the white spots meaning zinc deficiency. I just googled on zinc deficiency + fingernails and found multiple references to it. I then did the same thing for cacium found and the first 2 I checked said it was just a myth. Then I found a couple saying it was a myth for zinc also. Pfeiffer has seen 20,000 patients and keeps incredible stats, so I give them some credibility. However, they agree in general they need an independent party to be involved in the studies. I know about the zinc taste test. I heard it has some degree of success, but as with any of these things, some room for error. I waver between quoting these home diagnostics or not. As long as people don't treat based on them I guess I feel it is okay--just like the yeast saliva test. Really part of my reason for the post was not just to raise zinc awareness but to see if there was a disproportionate number here with white spots! Based on the very limited response, I don't think there is. Claire

Hi all, FYI, Sheila Rogers, the Latitudes director/editor charges $90 per hour for phone consulting. She has been doing alternative treatments forever and is writing a book on it. Someday I figure she will be approached for consulting like a Dr. Doris Rapp or Donna Gates. Her email is Sheila@Latitudes.org Claire

Hi Jane, Thanks for the kind words. I don't post because I am sole income earner right now and have my own business where I get paid by the hour. Unfortunately, every hour I post is less money (I spend time posting instead of trying to look for more business) and we really need the cash right now. I know people here know how expensive these treatments can be and we are retesting right now. I like your question, because I too believe that if you identify photosensitivity, it can affect what direction you look for causes. If you are not convinced re photosensitivity, then a test to convince yourself is of course the 'no screens' test for a week. (Plenty of posts on that one!) If you are convinced (it sounds like you are), then these are the tests I recommend as multiple avenues to investigate. No doctor's signature required: www.spectracell.com Their "5000" blood test (you need to find a lab that ships out of state). $195 I think, This will uncover low antioxidants levels, which are highly associated with oxidative stress and toxic metal levels (the body needs antioxidants get rid of metals). Mercury for example is known to cause light sensitivitiy. This test also uncovers vitamin deficiencies, for example a B2 deficiency causes light sensitivity. www.pyroluriatesting.com urine test ($48) Pyroluria causes light sensitivity. With doctor's signature: Great Smokies blood test --Elemental analysis test. Will show mercury. Urine Challenges (Great Plains) will also. I can't say which is best, both have trade-offs. Great Plains OAT urine test. (~$200) This test will show Glutathione antioxidant levels (also yeast, but I don't know that yeast is correlated to light sensitivity). www.elisaact.com ($300) blood test. Most people here with photosensitivity had food sensitivities, and found that eliminated foods made a difference. I don't get the correlation, but imagine that it just shows immune issues and the fewer things pushing the immune system the better. I don't recommend supplements without testing because I think it is vital that the program be customized. I tend to stay away from copper because zinc deficiencies are so common. I also think that for many, cal/mag/zinc at the minimum RDA is important. I do recommend a 15" TV/computer monitor combo for all TV/computer viewing. And in a well-lit room. And no flashy games. For some, sunglasses in the car will help. I personally believe that the sooner the immune issues are addressed, the better the chance of reversing the photosensitivity. Claire

ZINC DEFICIENCY Extrapolating Pfeiffer's stats on ASD kids from last night to us (rightly or wrongly) 2/3rd of our kids have zinc deficiency. I am beginning to think zinc deficiency is at or near the top of the list (a necessary but not sufficient element to treatment). Any white spots on the nails is a sign, per Pfeiffer (Dr. Walsh brought it up last night, and their doctor even looked at my nails. Here he discusses repletion--you can ask your doctor about it. [i will always suggest having a doctor involved if you supplement more than the daily RDA--note Pfeiffer warns that indiscriminate dosing if you don't need it can cause imbalances. Zinc is very important in getting rid of cadmium and copper. http://www.hriptc.org/zinc_deficiency.html REQUEST: Would people here please post: --Does (or did, if you went to Pfeiffer and have since corrected it) your child have ANY white spots (they can be small) on their fingernails--YES OR NO? --check your own or your spouses nails (good old genetics -- Any test concluding that they had or didn't have a deficiency? Funny, I called or checked the two people I know that I suspect of zinc deficiency and both had white spots. The 'test' is free, even if not 100% accurate, it sure would get me to test if positive. So far: 7 of 7 who posted showed white spots or tested for a zinc deficiency ---------------------------------- POSITIVE 1. Claire: Son, Yes. (actually no longer since the zinc supplements 6 months ago) Mother Yes. (still have them, I guess I am not supplementing enough. Father No. Confirming diagnosis? Yes tests showed deficiencies for all three. Labcorp for son, and Spectracell for mother and father. 2. Carolyn LSC (spectracell neg zinc def, Pyroluria positive--######. with zinc def. 3. Ad ccl (plus mother and father), Hair test showed positive for zinc def 4. Lulu yes for son, no for mother. Testing to occur soon, will update 5. NTBowen. yes white lines that grow out. Organic acid test showed zinc deficiency. Will retest with Pfeiffer in April and update. [i put this here though I am not sure what the white lines mean (Jennifer thinks protein..., but the real point is to ID zinc deficiencies, which her child did test positive for.] 6. Jennifer Zinc deficiency per Labcorp test. white spots unknown. 7. Kim serum test 76 (qualifier: per Pfeiffer standards) [i think this was Kim..] 8. Caz white spots on nails, no confirmaton ---------------------------------------------- People may think we don't have enough now to see trends, but I keep hoping that over time we do. We have to start somewhere! I will try again to update the top post for results. Part of this process is to guide people on where to spend money for what tests. Edited: What this means is controversial. Comments here show some thing it is magnesium or calcium deficiency. Some sites say it is meaningless.

http://www.hriptc.org/metal_metabolism.html After hearing Dr. Walsh discuss chelation, I searched his site. Excellent read. http://www.hriptc.org/metal_metabolism.html Your doctor may or may not agree, but it is good to read and ask him/her about. He discusses that chelation messes with the zinc/copper balance, and that most of these kids have zinc/copper issues in the first place. Marina, No, I am not posting again, but I would be remiss not to share this! I think that photosensitivity can ebb and flow based on other balances. If he is less sensitive now, that is great! (It makes me wonder if he would still be 100% tic free with no screens for a week or two again, but I realize that for most teens, a few tics is well worth not having to restrict it). Sometimes, for some, just having the break for a while seems to settle their systems--but many (most?) aren't that lucky. But if it returns, you just need to manage it. As for foods, I think managing them contributes to long term healing. And I think Ronna's point was excellent about seasonal allergies possibly increase/decreasing overall sensitivity. Here in the US, we just entered Spring, with some facing more troubles, so in Australia I believe you are just entering fall which would mean fewer allergens in the environment taxing his system. Thus that old bucket theory with less to fill the bucket. Just food for thought. I hope you keep posting on it, it will be a learning experience. Claire

Hi Caz, Marina, Ausclare, I spoke with Dr. Walsh of Pfeiffer at a seminar tonight, and he mentioned that Pfeiffer is going to Sidney Australia on April 1. He and another doctor will be there and they will simultaneously meet with patients and train a number of doctors from Australia at the same time. Pfeiffer's testing focus is: Pyroluria Zinc deficiencies and zinc/copper ratios Some liver function testing (and some other blood testing like hemoglobins) Methylation issues Hair testing for metals and minerals (yet even he discussed the high false negatives tonight) They believe in yeast as a factor and say Omega 3's are important, but they didn't test for this. I may have forgotten other tests. In the US, it costs $1200 all inclusive (doctor visit, testing and follow-up). You can call the clinic if you happen to live near Sydney (I know Australia is a big country) and are interested. Most importantly, if they train these doctors, there should be other outreaches in the future in other parts of Australia. I don't know their website, but I am sure you can do a google search for more. *********** TO ALL He brought up Pfeiffer's low % success with Tourette's', but then said he had greater success with other tic syndromes. His research on Tourettes is very old and it would be good to have it updated. He said they have an 80% success rate with ADHD (as judged by parents) and a 75% success rate with behavioral issues--but really the success rate for behavioral issues is higher for those who actually follow the program (90%), but given the behavioral issues, they have a lot of non-compliance. Also, Manganese is still important if you supplement zinc, even with tic syndromes. He likes 1-2 mg/day of manganese, assuming you don't already have too much. He also said that you must customize a supplement program because people have too much of somethings and not enough of others and it is very very individual. Thus they run tests--and even then must observe closely and correct. I am sure most here know how strongly I agree with this. Virtually everything else he said I had already read on his website. ************** I don't know how often you 3 read the board, I hope this post isn't buried by the time you check in! Claire

bumped for newcomers. Intro post updated for recent additions to 'survey'. We are up to 17 of 19. I also added an update on my son's sensitivities, which dropped like a rock in this past year. No more wheat/milk/peanut/corn/egg/almond/banana/milk delayed reaction, per his recent retest. The system of removal seemed to work, likely helped by mercury elimination. He still has yeast, so I was surprised to see such improvement. Am reluctant to reintroduce milk on a regular basis, and will hold off on wheat/peanuts until we also redo IgE testing. Claire

Thanks Susanna and Laurensmom, Thanks in advance to others. Laurensmom, can you please post the actual tests (lab and type)? What metal urine test--24 hour DMSA challenge, hair, blood, and which lab? What yeast test. We have had lots of people misinterpret a blood test reading to mean no yeast, e.g. negative RAST/IgE test for yeast means not allergist to yeast vs no yeast. I really appreciate your posting-- I am just trying to be as meticulous as I can in the survey given the constraints of a forum. I want to be complete when I add your input. For Susanna I already knew exactly where she tested from her past posts, so I could add hers. (Plus she named the new tests). Evangelia, I noticed I don't have it for you for yeast either. Was it the OAT test? If not, which one? For all, please list lab name (unless it was your doctor doing an in-house test) and type of test...urine, stool, blood, hair, muscle testing.... if you ran two different types of tests, please list both. e.g. if two different pyroluria labs, if both hair and blood/urine metals tests. Good for all to see measurable differences if any. Some discussing on metals testing here and in the DAN consensus paper in my first post on this thread. http://www.health-truth.com/articles/mercu...ury-removal.asp Claire

Hello all, I think we are finally getting a critical mass of people to do the certain immune tests to be able to start documenting the results to demonstrate a correlation between tics and certain immune 'assaults'. B12 --totally off topic for this thread: Look at your and your child's fingernails for the white half moons. If they are gone or barely there (except for the thumb, that one tends to stick around), it is a sign of B12 deficiency. Got this from the Braintalk gluten-free thread. B12 is only absorbed sublingually, so we use Solarary B12 gum. I have found a few people with no half moons since then! Unfortunately, since these posts span a long time period and I haven't been tracking it, please let me know if I missed your name or incorrectly noted your findings. I will modify the survey thread for your findings (e.g. I just added Dara to the no screens test with negative results....). There are a lot of tests, and we have a separate food sensitivity survey thread, so thread is limited to METALS, YEAST and GLUTATHIONE/ANTIOXIDANTS, and PYROLURIA. Please post whether you are POSITIVE or NEGATIVE. BOTH are very important to know if we are to get an idea of how pervasive this is. As we build more data here, it will help newcomers decide whether they should invest in the testing for their child. NEWCOMERS: There are a group of doctors called DAN doctors who do formal immune tests for Autism spectrum disorders (ASD). Though TS/tics are not considered an ASD, a number of us here have found either DAN or Environmental or other alternative doctors to run the same immune tests (be advised that an MD is usually required to order many of the tests). Although the number here taking these tests is still low, we have early 'evidence' to support the belief of some of us that certain immune issues that are common with ASD kids are also common with tic syndrome kids. It is so early in the process so time will tell how many will see reversals with treatment. Certainly for autism, the earlier treatment occurs the better the chances of reversal, so I encourage any parent that thinks this may be an issue to investigate whether testing is appropriate for your child. Certain insurance covers it, and some doesn't. ----------TOXIC METALS---------------------------- Okay, this section is tricky because hair tests can be good, but they are notorious for giving false negatives. Hair tests show mercury excreted through the hair, but the problem wit a large portion of these children is that they don't excrete the mercury, but retain it in their bodies. Theoretically, the urine challenge is the most accurate test, however, it can create other problems--especially children with yeast. We have threads with this discussion, it is not my goal to replicate this. Blood tests are well liked by some, but they aren't perfect either. The issue with tests is more false negative though than false positives. http://www.autismwebsite.com/ari/dan/treat...ercurymetal.pdf So anyone who took both a hair and blood test, or hair and urine challenge, please note if the results were different. ***Please POST: tests done (hair, blood, urine challenge), positive OR negative (not just positives, we are trying to understand how common this is), treatment done, how long for correction of metals, symptom reversal following correction) As for treatment, that is an independent topic to debate options. Chelation is preferred by many if not most DAN doctors, but it can worsen gut issues. the recent consensus paper clearly showed that glutathione (antioxidant) lotion was part of the protocol. My personal view is that the combination of the www.spectracell.com test and the greatplainslaboratory OAT tests will show you which antioxidants (if any) are deficient and guide to to the proper supplementation for your children. The DAN paper indicated that chlorella was not effective. THis is just one resource, if others have research on metal detox to post, we have a thread--please post it. I suspect your child's doctor will have their own approach, regardless of what we post here... POSITIVE FOR METALS 1. 2. Jean. Hair test negative, blood test positive for MERCURY, CADMIUM, ANTIMONY). Just uncovered in March. Treatment: Antioxidant supplementation, based on www.spectracell.com test. 3. Dara Urine Challenge positive for CADMIUM. Just uncovered in February. Current treatment is zinc. 4. NTBowen. Hair test. Negative for Mercury, positive for Aluminum, Antimony, Arsenic, Bismuth, Silver. Just uncovered, March. Treatment TBD. 5. Jennifer. Hair test? High lead and mercury? Treatment: selenium/zinc/vitaminC? Results? 6. FJ (Braintalk) Yes. started 3 month DMPS chelation in January. 7. Caz. High mercury, lead Test results not yet posted. 8. Andy. Did urine challenge. Negative for metals: Laurensmom (test?) -----------LOW GLUTATHIONE/ANTIOXIDANTS----------------- 5 of 6 tested Showed low glutathione on either Great Plains OAT test or www.spectracell.com antioxidant and vitamin 5000 test. Plus one with low antioxidants (unspecified in post) http://www.ewg.org/reports/autism/execsumm.php www.1whey2health.com/glutathione_brain htm www.1whey2health.com/parkinsons_htm Low glutathione (and/or antioxidants..) 1. Claire GP OAT test (Spectacell showed other antioxidants were low too, e.g. alpha lipoic acid and cysteine.) Oral supplements corrected ala and cysteine, but not Glutathione. Trying transdermal glutathione now (lotion) 2. Phyl GP OAT test 3. Susanna GP OAT test 4. Jean GP OAT test (Spectracell showed other antioxidants were low too, e.g. Coenzyme Q10 and Alpha Lipoic Acid) 5. Layne. Spectracell blood test. 6. Andy, Spectracell showed low glutathione (June 04) plus other antioxidants were low at time-- Coenzyme Q-10, Alpha Lipoic Acid. retesting recently as has been supplementing. 7. FJ low antioxidants (test?) Normal glutathione 1. Dara GP OAT test(low end of normal, but normal) ----------------ELEVATED YEAST------------------------ Yeast overgrowth is controversial in the medical community and it impacts absorption, leading to vitamin deficiencies. The stool test can be negative, since yeast clumps, so it is important here to have an OAT test (Great Plains does it, and Evangelia said Metametrix does one also) or some other test. Blood tests can show allergies to yeast (RAST) or low monocytes to deal with yeast, but I have read time and again that yeast is in the gut, not the blood, so a blood test won't show it. Great Smokies and Great Plains also run stool cultures for yeast. IF they are able to get a yeast sample, these are great for identifying which anti-fungal is most effective. Please post if you have done some test for yeast ordered by a practioner (including naturopaths who often use a different test from MDs), versus treating for it 'in case' or because it was likely. Positive for yeast 1. Claire (GP OAT) Treatment: 12 months of trying...Diet control (highly limited sugars) Capryllic acid (didn't seem to work), Nystatin (yes reduced levels, still there), probiotics, now trying Houston Nutriceuticals No-fenol. Results: too early to say--levels are unchanged, but metal removal had temporarily raised them. 2. Dara (GP OAT) Treatment. Discovered? Treatment: Nystatin, probiotics (?) 2 weeks on/1 week off. In progress, not retested. 3. Phyl (GP OAT) Treatment: Nystatin, (Oregano oil??) results: yeast reduced, not gone, improvement in tics 4. Heather (transdermal testing??). Treatment: Threelac, Enzymes. Results: improvement in yeast and tics 5. Chemar (test method?). Capryllic acid, probiotics (via yogurt) and diet control via The yeast syndrome book? 6. Kmtatt (test method?) Negative for Yeast 1. Evangelia (test?) 2. Jean (GP OAT urine) 3. Susanna (GP OAT urine) 4. Caz (CDSA stool) was negative, but kineseology showed disbiosis of the gut, so maybe still an issue ---------------PYROLURIA--------------------------------- Testing done via www.pyroluriatesting.com (associated with Pfeiffer) or Biocenter Biocenter showed my son borderline, while pyroluriatesting showed him high--I think their test is less likely to show a false negative. Pfeiffer says that 10-20 is borderline and should be treated if symptoms. >20 is Positive Symptoms can be poor dream recall (B6), and white spots on fingernails (low zinc), poor short term memory/attention issues Since pyroluria is discussed heavily on Braintalk TS board, I added the information from people there who took the test to enhance our 'data'. POSITIVE >20 1. Claire Positive Treatment: B6/P5P/Zinc. Results: accelerated growth. 2. Jennifer B6/P5P/Zinc. Results? 3. Nancy 4. Bean Treatment: B6/P5P/Zinc. (41) 5. Susanna (3-18) 6. FJ (Braintalk)--FJ is the one who raised this to everyone's attention on Braintalk. Her son had severe pyroluria (via Biocenter urine test). Treatment: B6/P5P/zinc/manganese. Result Complete elimination of her son's tics. She retests frequently and must manage copper levels from being too low. 7. Mable (Braintalk) (100) 8. LeLyon (Braintalk) 123 Borderline: 10-20 1. Dara--will retest (15?) biocenter 2. Robin (12) biocenter 3. Jamie (16) NEGATIVE <10 1. Jean 2. IllinoisMom (Braintalk)-biocenter 3. Caz 5.5 negative ZINC DEFICIENCY After I posted this, I realized that I forgot to include Zinc Deficiency, so I started a thread there. So far 7 of 7 poster's kids had it or possible signs of it. http://www.latitudes.org/forums/index.php?...?showtopic=1176 Best to everyone! Claire

Angibrandy, I am not posting here anymore, so if you have questions and will register and send me a private message, I will respond to you. Your identity (and mine) are still anon using private messages. Congrats on being so observant! That is the great thing about finding a lower baseline, it makes it easier to identify the trigger(s) when things shift. Claire Hello to all, all is well and I do check in to at least read your posts!

Hi all, I know every once in a while I say this and I don't always mean it.. But I have a lot going on and won't be able to post, so please don't worry if I don't respond to posts. Sometimes I come back just because I feel 'rude', but I really need to spend time on work. Good luck to all in the meantime. Claire By the way, my son's cough seems to finally be gone, yippee!

Robin, I swear by the low VOC paints. My son's ticcing started in full force after me moved into this freshly painted home. Looking back I wonder if that was the true genesis of when his tics started, since he hadn't reacted to screens before. Later, a freshly painted room caused tics (he still had some screen exposure, but clearly his tics would increase when in that room for more than a few minutes. When we last painted the whole house again we moved out during the painting but came back to zero smell and he had no reaction at all. Of course, not every child has chemical sensitivities, but I bet there is a higher proportion here--and it sounds like you notice it with your son. For myself, I was not surprised that paints caused problems, just amazed that the low VOC paint was such 'smooth sailing'--worth every penny. Be sure and get it for the primer also! I don't know how anyone managed without a good selection of foods! Thank goodness for Whole Foods. Claire

Natalie, I don't know the brand, but we have an electrostatic filter in the basement, where we rinse them out every few months. Also, we do wash bedding often and have ONLY leather furniture. I am the 'meter' for dust mites--the first to react, so we had to do this. Of course the replacement process took years. Claire