Claire

Kim, Klaire does NOT require a doctor's signature. I order it through: Needs discount vitamins. Overall I find their selection good and their prices competitive. (800) 634-1380 Still doing MT promotion for both my son and I. Next month during the break we will do some retesting...zinc in particular is important. Still haven't done the Metametrics test. Since I am seeing his doctor, I will probably just have him order the Great Plains test for apples to apples. Alison, That is WONDERFUL news. I remember when we first found that my son could have pizza with enzymes. What a relief to be able to go to birthday parties, I can relate completely. Funny your comment on yeast, I had stopped threelac for my son --just got out of the habit--and now I want to start again, since I was thinking it was getting worse again...one small patch of eczema is back, which is a disappointment, and he seems more tired again, though not as bad as the worst times. The best of luck to you with the toy store. Maybe take him during the daytime to minimize the light contrast. When we first took my son to the movies again we had old sunglasses with one eye covered and one lens popped out. I think it did help, though he was still more fidgety afterwards...but no tics at least. Claire

Momof2xyz, Antibiotics can cause yeast issues, search the threads for the at home yeast test--or ask your DAN doctor for the Great Plains OAT test for yeast. But sometimes just being sick is just more than they can take, especially with immune systems that are already depressed. My son doesn't handle no sleep well at all at all. Finally, zinc deficiencies can cause major anger issues--I absolutely found this with my son. He was so angry for a time, and we retested his zinc and it had dropped really low. We corrected it and he was fine. Labcorp has a serum zinc test for this. Zinc deficiencies are one of the most common things for ADD, and we seem to be finding it for kids with tics also. See ya. Claire

Alison, So nice to see you too! I am so glad you are in a good space right now. I know how important it is for them to participate in those occasional events. Warmest regards, Claire

Hi Noelle and Momof2xyz, Kim is right that I don't read or post very often, but I did notice activity on this thread. Momof2xyz. It is my belief that certain underlying immune issues can cause or increase photosensitivity. Kids with tics who are photosensitive have their neurological systems constantly assaulted by this trigger. (Others get migraines, some seizures, and for many kids...tics). So stopping or properly managing the TV/gameboy/movies/computer can make a huge difference in the tics. As you may see, we did this for our son. However, it is tough to do through the pre-teen and teen years and thus my focus (along with others here) on correcting the immune balances to minimize or eliminate the photosensitivity. Another view is that the immune system is like a bucket and when it overflows with all the assaults/sensitivities, the child tics. Noelle, You are right in that MOST neurologists don't understand this trigger. I think it is because in the 90's is when kids started being exposed to all these electronic devices and bigger TVs, so it is too new for the doctors to have awareness of. Plus it can be a slow build thing. You are lucky that you are so in tuned. I totally 'get' being the mean mom, I was there and still must be on some things. To me, if you know that the electronics are a trigger (and I don't buy that it is just the excitement, because my kid would get excited about a lot of things and not tic, plus he didn't tick It is my firm belief, that the underlying causes must be dealt with or the photosensitivity will only increase over time. Then small exposures to TV even started causing us problems. How interesting about Star Wars--that is to me the biggest trigger of all due to the darkness with flashing lists. Almost like a strobe light. For us it was mercury, some vitamin deficiencies and some food sensitivities that we dealt with that reduced his photosensitivity. We still use an LCD monitor at home and at school, but finally he can tolerate a big screen movie. Though I never took him to Star Wars again after our own horrible experience with Episode 1. This board wouldn't exist if mainstream medicine understood all of this. None of us have/had the luxury of waiting until they 'got' it--we want our kids to have normal lives. I am very proud of you (odd feeling, but I am) for sticking with your beliefs. As hard as it is, at this age it is MUCH easier to manage/control than later on. But my unsolicited advice to you is to find a good alternative doctor who will run the test (or run them yourselves by finding them at www.directlabs.com and then take the results to an alternative doctor if you find positive indicators of certain issues. I saw middle school as the time when I wouldn't be able to control the exposure and worked toward improving his immune system by then, and I think I was absolutely just in time! This started for us at age 8, we figured out and removed the trigger within 2 months. Then it took us 2 years of increasing sensitivity to find a good doctor. It has been 27 months since any tics at all. period. And he still doesn't play flashing games, but he does get lots of computer and TV time on an LCD (no flicker) monitor, not a CRT one--a couple of hours a day (I try to limit now just to keep him active and fit). Best of luck to you, really! Claire

I have the book too, and posted a positive review on Amazon.com. I would encourage any of you who have the book and have benefited from the information in the book to post your review. even if you found the information on this Latitudes website of Sheila's site before she wrote it in the book, it is still valid to comment on the general techniques she discusses and will give those families searching for solutions for their kids some encouragement that they can work. I wrote a review and it appears that AusClaire did also. If you already have an account with Amazon, it lets you change your name to a pseudo-name before the piece is posted. Here is the link to her book on Amazon, if you are inclined to review it. http://www.amazon.com/gp/product/097639090...glance&n=283155 Best Claire

Hi Kim, Good to see that from Klaire. I just know that our DAN doctor recommended it and the company. I think Dr. Houston of Houston Labs worked at Klaire before he started his own company. I make sure they are packed in ice and shipped overnight when I order them from NEEDS. I never saw any reaction to no-fenol or pro-biotics. When I would take him from 1 to 2 2 capryllic acid capsules for yeast way back when, he would complain of nausea, which could have been die-off. I just stopped the capryllic acid when we didn't see improvement in the OAT test. For me, the Threelac caused a big rash initially (die-off most likely) that resolved itself. I really think it helped me. Good luck moving to the 2x a day for the yeast control. Claire

Kim and Andy, We use Klaire Labs Pro-5 which has 25 billion, and we do it twice a day. I hadn't heard that about Culturelle Andy. A friend who sees our same doctor says that he says to use a variety of probiotics because you just don't know which one works. I thought that was interesting. Right now we also are doing Threelac too, though I put it in a capsule cuz my son hates the taste. I am glad you are seeing success with Nystatin Andy. We saw it the first round then not at all with the next round. Kim, we did the no-fenol with the Nystatin and saw no improvement in yeast, what a bummer. That doesn't mean it doesn't work for others though. GSE (grape seed extract didn't help either). The Houston enzymes really have enabled my son to have wheat again. His test last summer showed him highly allergic, but as long as we limit the amount and use enzymes, he is fine. One day we gave him unlimited wheat (it was Christmas and you can imagine the pressure to do this) and clearly not enough enzymes and he could not get out of bed the next day. It was amazing--he couldn't eat anything either and I had to force a glass of water down over the course of the day. That was a first. So I really believe in the enzymes. Andy, I too am tired of supplements, but I do believe they are still necessary. I also know that sleep is still critical for him--moreso than some kids I think. Interesting comment you made on 'not noticing until 18 months"--good point! Kim, I literally just saw some of your questions right now as I was about to hit reply. I missed your questions on Carolyn's thread also. I will go through them now: Anyway, as I posted on the other thread, yes some doctors think the yeast, though bad, is needed to deal with the mercury/metals, so you really must get rid of the metals first. Although McCandless says the yeast then interferes with metals excretion so it must be managed too. I think it is terribly confusing myself and am stuck in that I don't know what to believe. So we are trying to bring the yeast down, but I would worry less if a little was left. Looking back, his yeast when we started 2 years ago was just above normal, and it was only when we started removing metals that it shot up. Metametrix OAT test. I already paid for it and received the kit from DirectLabs. I decided to wait to give it because I keep hearing that moving metals increases yeast issues (Andy Cutler says this too). So I want to wait until we have done MT promotion for 3 months and then I will give it to him. My ONLY concern with Metametrix is that past tests were Great Plains and thus there is a variable there that can affect comparisons. I know we did another test at two different companies and there methods were very different. I wasn't supplementing much magnesium when the results were high, I think it was 250 mg, which is less than the daily requirement I think--about the same as now when the results were low! I really think it was the fact that he was taking magnesium salt baths and washing and rinsing his hair in that water, with the residue. Another test showed him low in magnesium and that is why we supplemented in the first place. MT Promotion. Pfeiffer has a proprietary formula with some combo of amino acids, etc. (they don't list the amounts) that they require that their practioners or a doctor 'prescribe' to a pharmacy. Even though it is all composed of over the counter ingredients. It is one tiny 87 mg pill and he would take amino acid supplements far bigger, and sometimes I feel like it is a sugar pill and couldn't possibly make a difference. But then I remember how little DMSA/ALA and chelation supplements are and the risks and rewards. Anyway, if it works, it really uses up the zinc, so Pfeiffer is careful with it. So far no noticeable change on the MT promotion for either of us. It has been 1-2 weeks I think. And I agree with you so much on the zinc test being a first step! I would say it for kids with stunted growth also, especially after our son shot up after we began supplementation. Claire

Thanks Kim, I noticed a section on MT promotion in the paper you linked to (I pasted in the excerpt below). This is exactly our current target with our son via Pfeiffer's MT promotion (MT=Metallothionein). We are doing it simultaneously. I feel zero difference after a week. Also, we just got the recent hair results back. The one thing that was too high was molybdenum--something he had been low in (and is supposed to help with yeast control) so we were supplementing at 300 mcg/day. Unfortunately it is compounded in his vitamins, which I just ordered a new 4 month supply of. Oh well, we can give them once a week for a while. He was low in magnesium, and we had cut back because the last hair test showed him high--now I am convinced it is just because he was taking the magnesium salt baths when we took the test last. So we are adding magnesium. This supplementation does require monitoring (boy do I sound like a broken record!!). His metals (mercury and lead), which showed high in the past were quite low--but it could be that without the same antioxidant supplementation (since the ala and cysteine caused yeast issues) he just is not excreting it. (He still shows lead in his blood, not high, but Pfeiffer says it just shouldn't be there, so we know it is there.) His hair still shows high in uranium (always high--in 4 different tests) and tin. His total toxis representation went from off the charts high to within normal range, but again, we aren't doing the things that encouraged excretion anymore--we have just been waiting for MT promotion to begin. It will be interesting to see if the MT promotion raises his mercury and lead l excretion in 3 months. Claire From Kim's link above... Metallothionein dysfunction This hypothesis was proposed by William Walsh, PhD, who heads the Pfeiffer Research Center in Illinois. He took extensive biochemical analyses of over 500 autistic patients that are treated at his clinic and discovered that almost universally, these children have abnormal copper/zinc ratios with high body copper and low body zinc. Extrapolating backwards, he discovered that the body’s control mechanism for copper and zinc is a function of a family of proteins called metallothionein (MT). Other functions of MT in the body include development of brain neurons, detoxification of heavy metals, maturation of the GI tract, anti-oxidation, boosting immune function and delivery of zinc to cells. MT dysfunction would result, then, in many of the issues that we see with autistic children such as the leaky gut syndrome, incomplete breakdown of casein/gluten protein by zinc dependent enzymes, disrupted ability to combat yeast, reduced production of stomach acid and impaired stimulation of the pancreas by secretin. It would also lead to inability to clear the body of heavy metals, a disordered immune system and ultimately to the neurological changes seen in autism. It would also explain the male sex predominance (4:1) seen in autism because MT synthesis is enhanced by estrogen and progesterone. MT dysfunction could be caused by a genetic MT defect, a genetic disorder that disables MT, or an environmental insult that disables MT. Theoretically, if we could find a way to detect the MT abnormality early on, autism could be prevented through avoiding environmental insults and supplementing with MT promotional agents (zinc, glutathione, N-acetyl cysteine, selenium, pyridoxal-5-phosphate, vitamins A,C,D,E, others.)

Hi Carolyn, Congratulations on trying new foods. Re the iron and constipation, I believe that is why our DAN doctor recommended "SlowFE". It says on the package that is has been clinically shown not to cause constipation in the same way that other supplements do. You might speak with your allergist about just taking it during your menstrual cycle...many women have low iron because of the blood loss then. Per my call with Pfeiffer this week, I just started MT promotion, as will my son--they will mail the proper supplement (it is just a 'secret' combo of supplements in the right doses, but they require a prescription). Apparently Pfeiffer has shifted the program from 3 days a week (weekends) 4 days off, to every other day. They told me to continue supplementing his zinc, even though it is high, because MT promotion will bring it down as it attaches to the metals (7 to one or something). Claire

Have you tried to leave Andy Cutler a direct message at his yahoo site about your reactions? I don't have the link anymore, but he answered my questions. I remember him saying to doing it on weekends and then take the week off, which is different from what you are doing of course--I assume your doctor has his twist on it. Yeah, methylated mercury was the bad stuff, thanks. My son's iron was: Iron 26 [45-160 normal] Iron saturation 8 [20-50 normal] Ferritin 18? [20-200 normal] Ferritin is iron storage. By the way, 3 different doctors (2 alternative, 1 a general practioner], including an allergist, where concerned about his iron levels and wanted him to supplement. In fact I just read that supplementing lots of zinc (>100 mg) over a period of time can cause anemia. (see link below) I can attest to what a difference it made in his energy and mood. I think it is odd for a doctor not to recommend treating a known deficiency in something so well understood. http://healthlibrary.epnet.com/GetContent....&chunkiid=21654 All this will probably be deleted later...you know me and posting info on my son! Good luck. Claire

Carolyn, Glad you are doing so well (from scanning a few posts). I wanted to comment on chelation, iron and zinc. Chelation I am glad to hear that you are chelating--I see metals as having such an impact. I understand that chelation pulls out zinc, so good to watch those levels. Also, I read to be careful that you don't give zinc at the same time as the chelator. I like Andy Cutler's method of chelation best, and almost did it but we are going to do Pfeiffer's MT promotion first. Andy really likes a greater frequency. Zinc Anyway, re supplementing the zinc, we did 50 mg for our son, per Pfeiffer's instructions, and after 6 months it had actually dropped, and then we bumped it to 70 (per Pfeiffer) and after 3 more months was almost no impact -- he was only at 84 per Labcorp, lower than they wanted for MT promotion where they want zinc at 120 (their way of getting out metals, which also depletes zinc). But guess what, after 6 more months on the zinc his went to 180!! (normal is up to 150). I just found out and will talk to Pfeiffer this week as to what we will do, e.g. stop supplementing at all, or do some low dose as we start MT promotion. This just reemphasizes the need for regular testing when doing significant doses--we must really stay on top of things!! In any case, his growth and resistance to illness has been terrific, but of course, I definitely want his zinc back in range as quickly as possible. Iron My son had low iron too and we supplemented 'chelated iron' for 3 months which had no impact. So our DAN doctor recommended ferrous sulfate--just like your doctor. Per his instructions, we got "Slow FE" brand, which was 50 mg of slow release a day. (Remember to others that my son had both low iron and low iron stores). Well after 6 months of this, his iron is right in the middle of the normal range...and his iron stores (ferritin) is just within the normal range, but at the low end. I will get guidance now as to whether we go to every other day now, or a lower dose or whatever. But it has made a huge difference in his energy. Yeast Just to confuse everyone, I now know that some doctors think yeast overgrowth, though not a positive thing, can be a necessary reaction of the body to too much mercury--keeping it from turning into the bad kind (I forget which is which, methylated, or organic mercury...) Anyway, food for thought, oh brother!! Of course, this is likely different from yeast overgrowth from antibiotics. We just got back a ton of blood test results from Labcorp (via Directlabs, thanks Kim). He was normal in everything except zinc (high as mentioned). Though he still shows lead in his blood at 20 (Pfeiffer wants it to be zero). I am waiting for the hair metals test and still need to send in the urine/OAT/yeast test. Since we haven't done the transdermal glutathione, I don't know if we will get a false negative on mercury/lead (they showed high when he was doing glutathione). But I want a new baseline since we should be starting MT promotion in the next couple of weeks--which should help him excrete metals again, if Pfeiffer is right). Question: Carolyn, Do you notice that you feel any different during the days you chelate? (Better or worse or just different). Claire

1. The yeast stool test is mostly good for culturing yeast to see what antifungals are effective against it. It gives a ton of false negatives. The OAT (Organic Acid Test) urine test is the most accepted test for yeast--even Blue Cross has Great Plains as a network provider now. Our son was negative on the stool test 2X and he simultaneously had an OAT test done by the same lab which was positive. If your doctor won't order the Great Plains OAT test, you can get one from www.directlabs.com from Metametrics. Direct labs provides the doctor's signature. Both companies also show glutathione levels on that test--a good indicator of trouble detoxing metals. 2. The IgG test is worthwhile...how many foods did they test? Did they test gluten/casein also? What lab? So your son was allergic to absolutely nothing? Amazing...assuming that they tested for 300 foods as is common and not just 9-10. He is lucky. 3. I have already commented on the hair metals test not being a good diagnostic. Though Dr. Andrew Cutler has a counting rules system to come up with metals issues from that test. Pull out the test and check it against this. I can't comment on false negatives or not for his approach, as I haven't seen stats. http://home.earthlink.net/~moriam/HOW_TO_h...#counting_rules 4. In my opinon, many immune tests are missing from this. I wouldn't expect to see issues with blood count or an EEG. Surely some people do have strep issues, and that was worth checking. I am really surprised he did an amino acid urine test as a first round test. Below are some additional tests that I think should be done (our DAN doctor did them) and that we and others here have found positive. pyroluriatesting.com urine test--no doctor's signature. Labcorp has a zinc/copper test, also a histamine test for methylation issues Great Smokies elemental analysis blood test. (not perfect, but another way to check for mercury, lead--less risky than the urine challenge) Spectracell FIA 5000 (no doctors signature needed, but much cheaper if you do because of insurance). Was your child photosensitive (ie did you ever test for screen elimination? I only ask because the kids in that sub-group may have a different set of immune issues. Also, I think that for some of them, some management of this (e.g. LCD monitor) is almost a requirement to keep tics at a manageable level. Just like those really sensitive to artificial ingredients, or chemicals (e.g. a newly painted house or carpeting or molds) need some environmental modification. I haven't posted in a while and do need to disappear again, but I hope that some of this helps you. I should be getting Sheila's book anyday now. I was reacting to your comment that your DAN doctor had run 'every test' and your child was negative to them. He got you started, but missed a lot. DAN doctors aren't specialists in tic syndromes--they are just a great starting point for some. Every parent here has done a ton of their own research and had to educate even their alternative doctors on what they needed. I would be surprised if your child did not show positive to at least one of the tests mentioned in my post here. Just based on everyone else who has posted and what results they have had--most have multiple things. As Chemar said, every child is different and they benefit from and react to different things. Jeanchan's comment on Taurine is one good example. As for whether you should let your child just tic, that is a personal decision of course. It takes a certain skill as a parent to keep this from taking over. But to me, collecting urine at home for example is so non-invasive that I don't consider it a hardship. It is (was) the restrictions that were more troublesome. As for the doctor visits, we found a DAN doctor who only required our child go to the first visit, so we weren't dragging him around all the time. We combined the blood tests so that it was once every 6 months and now once a year--in fact, after 2 years, most of our testing is annual now. We now spend $1000 on tests versus the many thousands we used to spend. We will see what our new insurance covers. At every step of the way, my child would have taken tics over the restrictions and the supplements. But my own view is that the tics indicated a health/immune issue and as a mother it was my responsibility to return him to good health. He has shot up in height, and in great health now--no longer gets sick all the time and his mental stamina is great again. It was worth every bit of effort, including not just the research but constantly coming up with ways to offset the hoops he had to jump through for this issue with other ways to 'spoil' him. I always tried to keep the focus on his health. My son is now a completely well adjusted, happy, popular middle school kid...and without a single tic in over 2 years, His 'restrictions' are minimal now. (food issues and minimal CRT screen viewing. His big 'difference' from his friends is that he takes supplements at home--but even those are compounded so the number of pills is minimized. With the advent of LCD screens, even that is becoming a non-issue as we move forward. Look at the folks here--the vast majority have had a big impact based on their own customized programs. But it did take a lot of time and effort, that is for sure. Good luck. Claire

Mommy11 As Chemar commented, if there is a family history, it could be more classic 'TS' versus some of the immune related tic syndromes that can mirror it. It would be impossible to comment on what the issue might be without your listing *exactly* what tests were run and by which labs. Not all DAN doctors run the same tests. Andy is right in that hair metal tests usually give false negatives (I have read up to 90%!). These children have trouble excreting metals, so it doesn't show. Andy commented on the challenge test as one method. As for his comment on glutathione, if you did the Great Plains or Metametrix yeast test, they have a area for glutathione (pyroglutamic) in the toxic area, which if on the low end can hint at metal issues. Low antioxidants on the Spectracell FIA 5000 test would also hint at metal issues. The Great Smokies/Genova has an elemental analysis blood test for metals that can help identify them. There are blood serum tests for zinc and copper that I think are worthwhile, as I do the pyroluria test. Depending on which 'allergy' test they did (IgG for 100's of foods or IgE for just a few foods), Ronna's suggestion on the elmination diet might be worth considering. Good luck. Claire Merry Christmas everyone!!

Best to all of you, and I hope you all have lots to be thankful for this Thanksgiving. Claire

Kim, You are an angel. ))))))))))))))))) This is wonderful wonderful thing for you to pull together. Please do tell Hilary that she is helping a whole group she didn't even know about. I haven't been around the forum at all lately--life and work are all-consuming now, and have only started to make a dent in reading this thread. Though I will say that summer with 'no homework' is a needed break for our family. I am also still blown away that you found that directlabs.com site to order your own tests. I am amazed that my friends aren't taking advantage of it--I tell them about it. I personally have just done a little there (doctors data hair test), since our DAN doctor has been so good about ordering whatever tests we want, so it is less necessary for me. I got all my amalgams out, and will start MT (metallothionine)promotion for myself soon via Pfeiffer. I have the supplements on hand--just figuring out if I need my crowns removed first also, since MT promotion is supposed to pull metals, and old crowns can have mercury/amalgams under them. I see that Dr. Usman (ex Pfeiffer) mentions metallothionine also. Caz, glad things are okay, I am sorry for the setback with the virus, but you know that is temporary! Good luck with B-12, we do sublingual B-12 ourselves. Again Kim, this is a very amazing thing for you to have uncovered this resource and shared it. As for blood tests with things in common--you know I believe they exist, they just aren't the ones the mainstream doctor's typically run. More like cancer and immune system specialists (and of course the autism community). I am still personally playing with the concept of whether metals redistribute or not if the gut isn't healthy. Andy Cutler on yahoo is convinced they don't IF you do a DMSA every 3 hours vs 8 hours--otherwise he believes that they do redistribute. Just one more opinion that I am throwing out there, not intended to be stated as fact at all. I don't believe anyone has proof on this one either way. I sure wish this one was known for sure. A friend of mine says that Donna Gates (bodyecology) says that healing the gut will pull out the mercury on its own. Man, what a lot of opinions on this one. I suspect that as with everything else here, one size doesn't fit all. But Donna wants to have you eat lots of fermented foods (e.g. fermented coconut water)--tough for kids--very sour. Good luck to everyone. Claire

Sydney, Eating non-food items can be pica (spelling?), which can be from low iron. There is a doctor's list at the top of this forum with alternative MDs who DO understand that nutrition/gut health/toxic metals can impact tics. You should ask over the phone first. You probably read that Pfeiffer thinks white spots are zinc, though others thing other things like magnesium. Magnesium is one of the most common deficiencies. You can do a test at www.spectracell.com to uncover most vitamin/mineral/calcium deficiencies (zinc, magnesium, etc...). Paints after the 1970's should be lead free. But the doctors data hair test above may uncover this anyway. To all, I found this interesting 'faulty mineral processing' analysis of the doctor's data hair test. The writer says only 1 in 10 with mercury have it show in the hair test, but offers another way to look at the test to uncover mercury impact. http://home.earthlink.net/~moriam/HOW_TO_h...#counting_rules Claire ps back to work for me!

Due to the appearance of a new poster(s?) criticizing the board...I didn't stop posting. But I really really really have to disappear now. Good luck to you all. Claire

Daniel, Please tell your wife that my son has not had a single tic in 18 months--I believe 100% they are gone forever with the treatments that we did. I am not sure why she still thinks he tics? Like Chemar I continue to post here to simply help others. Plus I also am working to eliminate the food restrictions and sharing my journey there. Heather's son no longer tics (he did yeast) Jennifer's son stopped ticcing completely when he had treatments. Alison's son's tics are either gone, or so minor that only she knows they are there--meaning no social impact for her son. Other's here are still early in their journey--seeing great improvement. As for occasional outings with icecream, I strongly recommend that you get Houston Nutriceuticals AFP Peptizade and Zyne Prime. Some children who react to casein (milk) and wheat/gluten find they can have them occasionally (some even regularly with them). Then just WATCH--maybe he will be just fine. But Chemar is right--I found with my own husband that he trusted a doctor to guide this, not me. The right doctor can educate her. This is clearly hurting you and your family, no easy solution. edited after reading Chemar's post: Yes, some children will always tic. No guarantees, but if you can minimize it, it will can their life easier. You won't know without trying. Over time, you have to find the balance in their lives of ticcing vs restrictions. Claire

Chemar and Jean, Your e-cards made me teary! My son greeted me with a card, a big hug and some 'repair' work he had done on something I had broken. Claire

Hi Caz Thanks for the nice story and great wishes...ours doesn't start until tomorrow. Happy Mother's Day from me also to all the dedicated mothers here (fathers, you get your wishes later). My best gift for Mother's Day is that my son is just doing so much better with the copper and extra zinc, he has been his sweet loving self and needing much less sleep! Claire

Caz VERY interesting, though I need to reread to understand better. FYI, our recent Great Plains test showed high suberic. The analysis said that it could be caused by increased intake of medium chain triglycerides found in coconut oil. (I have switch to much more coconut oil vs butter in the last 6 months for better adrenal support). The then says: regardless of cause, carnitine supplementation may be beneficial. Doesn't that contradict At one point my son and I both tested low in carnitine, but we both supplement now. I suspect it works well for many here because they are deficient, and this is creating problems. Also, I have a stubborn Vitamin E deficiency that one year of supplementation of 400 IU of Vitamin E didn't correct. I even started trying to take it with Houston Zyne Prime for fats. I am cautiously moving up my dose and will retest in a few months. I read it can be related to poor ability to metabolize fats (or to excess polyunsaturated fats, which use up the body's Vitamin E). My son was low normal in Omega 3's when we first tested and high in Omega 6's. He was high in saturated fats. The analysis says: high levels of odd chain fatty acids may indicate an increased need for B12 and biotin. He is getting those now anyway. I wish I had the money to retest that all now We do Nordic Naturals DPApro for Omega3. Then for pyroluria, Omega 6's are recommended...so I occasionally do evening primrose oil. The fats are sooo confusing. I kept thinking one gel cap of Omega 6 can't hurt? But I then worry about balance. Like when we supplemented calcium and created a magnesium deficiency. (Oddly, this just happened to me also. A prior test showed too high magnesium, so I didn't supplement it, just calcium and now I am magnesium deficient!) Finally the report showed inflammation tendencies and says fatty acids are needed to control this. I think oxidative stress is huge here. Claire

Don't know Alison, I am more concerned about him feeling 'blind' for a moment. Lapse of consciousness can imply mini-seizures. Have you asked him during those other times you noticed it whether he felt blind again or blanked out? Unlike a tic, this is worth checking--the difference being whether there is a lapse in consciousness. They are not uncommon in this whole area. And of course with photosensitivity, seizures are a rare, but possible outcome. I know that molds can set off someone almost passing out. I think that this is worth talking to a pediatrician about. For what it is worth, in the worst case scenario, my understanding is that some of these same immune issue treatments can help with that activity also. I don't think it necessarily indicates epilepsy to have a seizure (I know someone whose son had a seizure when vaccinated, and they told her it was not uncommon at all!). THere is overlap of issues between so many of these elements. Did they start before or after you reduces the vitamins? I can't remember exactly what, but there is always discussion that certain vitamins can trigger seizures in those prone to epilepsy. I remember that there was controversy on melatonin for example (I know you aren't doing melatonin). Like Chemar, I would wonder about pesticides. I would also wonder about a strong chemical sensitivity (e.g. toxic paints?) http://healthinfo.healthgate.com/GetConten...&chunkiid=38390 Good luck and keep us posted. Again, I think the important thing is if he is blanking out or not.

Hi Daniel, Yes, Omega3 is one of the few areas of TS being well studied. Keep in mind, this is only a portion. I strongly encourage you to reconsider the doctor who wanted you to do Nystatin for yeast. Yeast is a big tic trigger--I never knew your son actually tested positive. If you do it again, just use 1/4 the dosage initially and build up. And Alka Seltzer Gold is supposedly good to reduce die-off. Claire

Did you know that teething powder used to have mercury in it? It was causing pink disease (forgot the details). The medical profession denied the correlation--the NEVER admitted one, ever. But the companies took the mercury out anyway, and the cases of pink disease disappeared. This is probably the path the pharmaceutical companies are carving. Daniel, I hope you get more info than 'a tiny bit'. The mercury in many vaccines is above the toxic levels for adults. Somehow there is a way to get hard data. Claire

Hi Daniel, I hope I didn't sound impatient, just worried! This would be very difficult without both spouses in agreement. The unfortunate part is that you won't have 'proven studies' to show your wife. Does your child watch much TV/play much computer/gameboy? (I forgot the age..5?). You might want to go to the path of just eliminating screens for the week (some people here said the TV's just didn't work and their was no trauma about it). For 80% who tried this, they saw significant improvement. This isn't a long term solution but it might prove to your wife that this has cause and effect (if it does work), and then she might let you just take your son in for testing to see what is causing the photosensitivy. Claire