Claire

Thanks Heather. That information came from the photosensitive epilepsy sites--since they have the same trigger. They say 14" (or less) screens are best, and the higher the hertz the better. Phillips is coming out with a 100 hz TV soon--not soon enough... Natural lighting--by a window is best--though at night obviously this isn't possible Also ower the brightness if possible. View 3meters (9 feet) away. Okay, we never make it 9 feet, but that is what they say. I think a part of this problem is that this generation is viewing these screens right up close on their desks at a very early age while the brain is still developing. Combined with either mercury leading to increased light sensitivity an/dor yeast issues leading to vitamin deficiencies due to malabsorption, leading to increased light sensitivity. Plus TV screens are much larger these days than when we grew up--or at least when I grew up. So they dominate the visual arena. Neurological tests were run using sleep deprivation and then a strobe light. 8% of people have an EEG reaction and 'myclonus'--which is basically a muscle jerking in the face. Why doesn't that reaction itself get notice and publicity? I think we have all read about TV and adhd--why not tics? I have to keep pointing out--Heather has shown that with the proper healing, the diet can get more flexible and TV/computer may no longer an issue. Her treatment was for yeast and mercury levels. Ronnas had similar luck. The restrictions may not completely disappear, but they got looser for them. This is a pretty committed group here, I must say. I really appreciate the newer members sharing the Failsafe methods and comparing to Feingold too. Claire

Yes, plus LCD's can be for a normal desktop, but they are the skinny flat ones. Some CRT's are flat screens. The manufacturer will note if it is LCD. They cost more. We got a LCD that is a combo computer monitor and TV for $450. Claire

My neighbor said it is a grayish coating, but this doctor said she was looking for a 'patchy' look. Claire

Kimberly I wonder how they mention glucose dyscontrol? Not like hypoglycemia where you get sugar and they measure the impact on your blood sugar. Is she having more of a particular food while on the Feingold that might be triggering this? e.g. more fruit juice or sugar. Are you doing no salycilates (I can never spell this one). Claire

Foods are only one part of the solution. If diet alone doesn't work, it sounds like you may well have detox issues. And possibly metal issues and yeast. I would suggest the Spectracell.com test for vitamin and antioxidant deficiencies (no doctor's signature required). I just called them to verify this. You just need $285 if you pre-pay Also, the Great Plains Organic Acid profile will tell you if your glutathione antioxidant levels are low. I don't like supplementing antioxidants such as glutathione, selenium (beyond normal daily allowances), and cysteine without knowing the levels are low. As for 'not noticing the difference between LCD and CRT'--you wouldn't notice during the viewing, as the effect is cumulative and lingering The only way to tell for sure is to not have screens for a week. However, this is clearly impractical/impossible with a work environment. So the next best thing is to see if you can get an LCD to replace the CRT monitor. But if I had to put my money somewhere, it would be on testing antioxidant levels. If these are low and you raise them the detox process will begin. Finally, you don't say if you are doing supplements. These can help also. Other than the antioxidants, I see no reason not to try them out. Some common ones are listed above. My 2 cents. Claire

Hi Caz, Interesting about glutathione/selenium--I didn't know this. In fact I never heard an explanation for it. Hmmm...I will investigate this. QUESTION: What are amines?? And what are examples of them? Claire

I have mixed feelings about the Pfeiffer visit. The nurse commented: we don't treat tics because the treatments don't work. The nurse commented food sensitivities weren't a true allergy. This sounds like a mainstream medicine to me. They didn't test for Omega 3/6's but went by symptoms. The doctor disagreed with Dr. Walsh's comments that MT promotion could eliminate food sensitivities, e.g. to gluten/casein. That it was the difference between theory and practice! This was my biggest disappointment as it was the major reason for my visit. I can't see my pre-teen son restricting his diet 'forever', nor do I want him to have to. Back to treating the yeast and hoping this resolves the food sensitivities, as Heather has had luck with. For $1200, we only got 10 minutes with the actual doctor, who basically look for 3-4 allergy evidence with my son--his nails (white spots for zinc deficiency, a tongue check for severe yeast, and a bumpy skin test on the upper arm--he passed all three). I had to ask for 5 more minutes to ask my own questions of the doctor. She was nice though--and in all fairness, she will spend time reviewing the charts when the tests come back and making a treatment recommendation. I thought they were at the cutting edge of the DAN doctors. I now feel that they more overlap the DAN/EM/naturopaths. ie They know more about some things (pyroluria, methylation, mt promotion) and less about others (food sensitivities and tic syndromes). I don't think my experience is unusual in that other hear have echoed their comments on not treating tics. I am still happy I went though--I want the histamine test! Plus I want to see what their hair test shows for mercury (we did a blood test only), what their blood serum test shows for zinc and other vitamins--and compare to what we have seen. I like Spectracell a lot, but it is nice to compare with other tests. Odd that they only do a hair test for mercury, when they then discount that it may not be accurate. One thing I like is that Pfeiffer compounds their supplements vitamins. I want to find a compounding pharmacy! This will minimize the pills my son takes--or so I hope. They say it should. The trade-off is less ability to adjust. I trade off dosages a lot to 'test' things. I feel Pfeiffer's approach is more of a formulaic approach. The DAN doctor had much more customized testing. Our DAN doctor spent his own time learning everything and explaining everything. Pfeiffer had a sheet with yes and no answers (what about 'sometimes/frequently/rarely)? Or 'used to'. Very little is a simple yes or no. But I need to see what happens when the test results come back. Maybe it is just the data collection that is formulaic--done by a nurse who couldn't answer questions. So I will reserve final judgement until then. If anyone does this, please set your expectation for the first visit--it is data collection only. The rest must come later. I was so full of questions from reading so much of their site and had the wrong expectations. Maybe this is just the outreach clinic vs going to the real clinic as Nancy did. Jennifer, I really want to here what your opinion was. I think your child probably better fits into their treatment plan--we were more 'square pegs' with them--and to their credit, they are very clear up front before you register that tics aren't their focus. I am so glad we posters all have eachother to learn from. It is up to us to share. Some of us have wonderful doctors who do have great insights. I appreciate our own DAN doctor more now. Claire

This thread summarize what posters have recorded as to the impact on tics (and sometimes behavior) they saw from trying 'no screens 'for a week (TV/computer/gameboy/big screen movies) on their children's tics. I have listed the individual results. I am adding info as people post. "No screens" term compliments of Heather. SUMMARY: 20 OF 27 (74%) OF PARENTS THAT ELIMINATED SCREEN VIEWING FOR THEIR CHILD FOR AT LEAST A WEEK SAW A SIGNIFICANT REDUCTION IN TICS. For newcomers, this is not as drastic as it sounds, as it is just a one week test. For one week, you eliminate all screens (TV/computer/gameboys/big screen movies). Note if your child improves. If they do, continue the 'test' until no further improvement is seen for 2 days. That is their 'no screen' baseline. The best part about removing this trigger is that it can buy you time and your child piece while you try to wade through correcting underlying health issues. Most kids with screen sensitivity also had food sensitivities. Many if not most had yeast issues. Several found that correcting these issues eliminated the screen sensitivity--it is actually a very visible measurement of healing for some of us. How to handle the trial? know a couple whose TV or computer 'didn't seem to work' during that time period. Heather's whole school had a no screens week. Others loaded the kids up with book tapes, comic books, playdates and family board games. NOTE TO NEWCOMERS: FYI, This trigger is CUMULATIVE and LINGERS FOR DAYS, so many won't notice a direct correlation unless they do no screens for the full week. I had no idea this was a trigger for our son since it developed over time. Also, not noticing tics during viewing does not mean it is not a trigger. I was trying a number of things in serial and somehow this made it to my list. Before doing this test, some of children didn't tic during or immediately after view screens any more than the rest of the time, yet no screens still made a major difference. Finally, some may realize it is a trigger, but they don't realize that the impact can cumulate and linger for a week--which means this can be a major contributing factor in the ongoing tics. Reduction alone won't let you see the true impact. (Based on feedback from posters). If you determine this is a factor for your child based on a no screens week, then later reintroducing an LCD monitor has solved this problem. The underlying cause is mostly a reaction to the 50-60 Hz invisible 'light flicker' of the CRT screens. This is the same as flourescent lighting, also a trigger. To some degree it is the graphical movement. We have lots of info on understanding the why's on this and other threads. The cool thing is that many posters who did this started threads to directly report their experience. These have been very public 'tests'. If you search on their name + screens, you should be able to find their threads and the blow-by-blows. --------------------------------------------------------------------------- RESULTS OF THE NO SCREENS TEST Info: parent's name, no screens impact on tics, current limitations or status. how you handled the situation, some behavior comments. (Note: some did other things that week, so it may be a combination of factors, but they are included and the combination noted). **Saw tic improvement with NO SCREENS** 1. Ronnas Major difference initially. Later he was doing better with yeast, etc, and she reintroduced it with no issue. When he started eating more 'forbidden foods', he started reacting to TV again. Cuts it out during those times. 2. Heather. Major difference initially. Later he was doing better with the various treatment programs (including Threelac for yeast, NDF for mercury and supplements... He watches now without issues. 3. Andy. Significant difference. He allows it on a limited basis--30 min a day. 4. Jennifer M. Major difference. Eliminated painful neck tics Reintroduction brought it back, so still no TV Some LCD may be okay-she is still experimenting. [unknown re vocal] Other: Unknown, just getting started. No pyroluria. 5. efgh. Major difference--even vocal ones. Vocal ones come back with reintroduction [vocal tics]. After many months of treatment and no TV, recently reintroduced it on a limited basis with no issues. 6. Jean: Major difference. Still no TV. 7. jcandkc. Major difference. Still no TV--recent testing showed it was still a trigger. However, can watch static games. Not doing other treatments. 8. Tessa [braintalk]: Noticeable difference. Vocal tics later came back during gameboy. No continuing restriction. 9. Laurie in NY. [braintalk] Dramatic difference. "Tic-free when off the computer". Came back and lasted for 3 days when reintroduced. Last I heard, she was going to experiment with an LCD monitor. 10. 11. Lulu. 'Tics were gone'. TV removed from bedroom, Gameboy play stopped. Only occasional TV with family. 12. Ronna's friend. Tics went away. Tics started in spring coinciding with playing of new PS2 on old TV. Per Ronnas suggestion as to possible trigger, they moved PS2 to new TV and set time limits. Given shortness of duration of tics--could also be transient tics or spring allergies. 13. Evangelia. Significant difference. She combined no screens simultaneously with food and artificial additive elimination, so difficult to assess which program (or both) caused the substantial improvement. 14. Lynee. (Braintalk). Son took a video break over summer, with great improvement. When he started again, vocal tics came back. (Also did artif. ingredient elimination at same time). 15. Alison. Son's tics improved significantly. Successfully used a daily reward to motivate her child. Now doing vitamins also. Now watching for possible photosensitivity to fluorescent lighting. Definitely worse with animated cartoon shows like Yugio. Just got an LCD monitor, and is experimenting. First calm show seems to be okay. [background: PANDAS, with strong improvement with antibiotics] 16. Mmazz. Son's tics improved noticeably. (still has some tics). Tried an LCD monitor--still some ticcing but less severe that with CRT monitor. Raised issue of anxiety from feeling left out at school from no movie as worsening tics during the trial. Important to note then: How this is implemented is important to parent/child relationship and feelings about him or herself. 17. Helen. Significant improvement seen after two weeks of no TV--diet change introduced at same time for combined positive impact: no artificial color/flavor, no diary and almost no wheat, more organic fruits and vegitables. Method: Unplugged the TV and announced "TV is broken!" (the rest of us only watched TV after they were asleep.) Make sure everyone in your family works together to reinforce this. I had hard time in the beginning since I'm not home during the day and my in-laws always turn the TV on to keep the kids quiet. What I did was I called everyday to check on them so that eventually my in-laws got the message that it's important to shut it off. If you're firm with no/less TV, your child will get the message! My kids don't really bug me to turn the TV on for them anymore! Reintroduction TV test showed immediate ticcing. 18. Susan0101 Significant improvement. No TV/Gameboy for 10 days. (Had 2x at school, for 40 min. each). It took at least 3 days to notice a difference, but after 7 days there was a SIGNIFICANT difference. No vocal tics, just an eye tic. It didn't disappear, but is reduced dramatically compared to what it was two weeks ago. Process: Explained to 9 year old son why we wanted to do this. He has been a real trooper! He even commented ..that his eyes had "gotten better". That ...kept him motivated. No reward system, but spent more time keeping him occupied with board games, cartoon tracing books, etc. Other: Stress still a factor in increasing the tic. Now (post no screens week) son had appt with accupuncturist. yesterday, going with organic, no preservative foods. 19. Marina. "Oldest child" to try this--12 years old. Major improvement 80-90+ % (some days no tics at all). Saw no improvement for several days, saw some improvement by one week--continued for 11 days to reach 'baseline.' Did diet changes simultaneously: Cleaned up his diet, Therefore no artificial flavours, preservatives etc.. Milk limited to about 1 large glass per day, and limited high natural chemical foods as per failsafe guidelines. eg: Although he ate tomato slices no concentrated tomato pasta sauce. Although these restrictions prior to no screen did not eliminate tics, I have noticed that sometimes food aggravates tics. Noticed improvement in secondary (sports) trigger with screen removal. Osteopath visit also dramatically reduces symptoms. Helpful comments on execution: Said this was a big health issue that we should try our hardest to resolve together, otherwise the problem could escalate and that alternative treatment suggested by doctors could possibly involve drug therapy. 20. Layne. Significant improvement with no screens for a week. Reintroduced TV with LCD monitor and neck jerks haven't returned. Discussed plan openly with child. Originally noticed greater reaction during cartoons. Also doing Feingold, Bonnie's vitamins, removed fluorescent lights. Started seeing a DAN doctor. Saw improvement with restrictions- but didn't eliminate entirely 1. Ausclare. Significant difference. Limits screen viewing. Must 'detox' after heavy TV view at others. 2. Diane. Major difference. Youngest son's eye-blinking tics exploded when he started playing GameBoy consistently for the first time six years ago. cut this down--definitely helped greatly, but this tic was so entrenched it lasted almost two years, although it was minimal if he played minimally. Lost interest completely in Game Boy --his eye tic disappeared for 3 years now! Excitable computer/Playstation game--the tic is almost there again, so push him to cut back. Restrict violent shows-- contributes greatly to them having a happy and relaxed frame of mind and not being bad-tempered. **Saw NO improvement with no screens** 1. Carmon: Didn't notice any changes in tics after 1 week. 2. NTBown. They had a 3 year old, tried no screens, and saw no tic improvement. Saw behavioral improvement though, so only watches TV once a week. 3. Dara. Didn't notice any changes in tics after 2 weeks. TV removal was easy though, TV just 'broke' so the child never complained. 4. Karen. Did 11 days with no noticeable difference. 11 year old girl. 5. Robin 6. Cum Passas. Did do the two week no T.V/video test, (no change in him) during that time. 7. Patty. He used to tic during TV watching. 10 day removal, no improvement. Limits TV now and uses LCD screen from across the room. His tics are (virtually?) gone during TV, but other methods were used. ----------------------------------------------------------------------------- CLOSING: Doing this test doesn't mean no TV/computer for the rest of their childhood! It is meant to gather information only on how much this affects your own child. It As a parent, you need to determine what trade-offs you want for your child. I will go as far as saying that I recommend that anyone considering drugs for their child's tics try this first. There are no side effects to this, IF the emotional aspects are managed well. For a younger child, they are so adaptable and extra family time is wonderful: board games, book tapes, music, building...life is great and they won't even notice very much. Rewards might be appropriate. For teens, well, that is another matter--that is for you and them to work out. But camping trips or ski trips are a great time to try it. Rewards help. Others don't even mention tics and their TV 'breaks'. Only you know best how to manage this with your child. One woman (not included) commented that she thought the improvement in her child was due to being on vacation. But then he used the last few days of vacation on the computer and the tics came back. Finally, if this does help, I consider it a 'reprieve' while you use the gift of time to heal your child through other efforts to heal their immune system, in many cases to replace the nutrients that somehow never make it through the digestive system. You can test what they can tolerate and look into LCD monitors. I believe that healing greatly improves the tolerance over time. But for some whose children are really uncomfortable--they can't wait so long for the reprieve. I personally think the no screens test is most manageable for elementary children and most challenging for middle school on up, given the prevalence of computers and TV in our lives. As with all the summary threads, this is not a double blind formal study and of course is imperfect. As with the food triggers, to some degree the group self-selects themselves to those that suspect this in some way. Someday I hope all this anecdotal information will get someone to actually do a study. This is in part triggered by my Pfeiffer visit today--they said they don't treat tics because the treatment doesn't work. Bologna! I told them that then they just aren't applying the right treatments. They agreed they weren't food sensitivity experts, and clearly the screens issue had only occured to them in the context of seizures, not tics. So we are still on our own pulling this together. The only study I ever saw on this was that 8% of the normal (non-epileptic) population had an ABNORMAL reaction to flicker, as measured by a stroboscope. As with the other 'survey' threads here, I don't know how this applies to adults--we just don't have the feedback. Though I do know a number of adults who get migraines/nausea from computer and have switched to LCD monitors. I believe that the underlying trigger is light sensitivity to the flicker--very similar to photosensitive epilepsy. LCD monitors don't flicker, so the hope is that static games (the Sims, RollerCoaster Tycoon) and static business programs (excel, word, powerpoint) on an LCD monitor may not be an issue for many. We are building information on this, but a number of posters are finding this out. Fortunately the price of these is coming way down. 15" is the best, since it is the smallest viewing area. I personally think this ranks as one of those potentially life changing things you can do for a young child with a tic syndrome--even those that you may think have TS. In some ways, it is actually the easiest starting point to test for a week (no restocking the kitchen). I think this one is harder on the adult than it is on the young child--no 'electronic babysitter'. If successful, it is a starting point to show you that for most of our kids, we can make a difference. It is just a symptom of other things--I would bet the healing of the gut (for yeast and potentially related mercury detox) underlies this, just like the food sensitiviities that seem so prevalent. If anyone else truly tries this for a week, please post what happens--even if no improvement is seen! The goal is too get an idea of how widespread this trigger is among kids with tic syndromes. We have other threads, e.g. artificial ingredients--For example, Jeff's kids are totally fine with just elimination of artificial colors--this just isn't a trigger for them. Also food sensitivities. Supplements are harder to measure, because they take longer, but with the right professional guidance, they are general critical to long term healing. Yeast/metals are big issues too, that general require some supplements for healing. Good luck. Claire

Sorry Phyl, I always get olive leaf extract and oregano oil mixed up. Both Italian flavorings starting with an O. I corrected my post. efgh, I meant oregano oil, though olive leaf extract is also an antifungal. So Phyl, every book I read said diet change is required. Some mainstream physician (well respected, but forgot his name) uses this as an argument against candida treatments: Nystatin did nothing on its own. Claire ps Threelac claims no diet change is needed. But no studies there. But I am experimenting with myself based on Heather's success.

Caz According to our DAN doctor, the CDSA test gives a lot of false negatives. Yeast tends to form in clumps, and if you don't get that clump in the sample, you won't get a positive culture. If you get a culture, the good news is they test to see what is most effective on your yeast. Phyl's son and mine both showed negative, yet they were both positive on the Great Plains OAT urine test. I would believe a negative on that test more. My son and I both had low probiotics on the CDSA test, which does hint at a potential yeast issue. I think the Great Plains test is 'only' $128. They can also test for peptides for gluten and casein in the same urine sample. I highly recommend the Great Plains test. They will also tell you about Glutathione levels--very very key in detox, such as mercury. 4 of our kids on the board who got this test done had low glutathione. We have threads on this with links. Claire

We only eliminated the IgG foods. e.g. my son tested for sensit. to rye and wheat, but not other glutens. I tested sens for barley, but not other glutens. He was positive toward apples, bananas, cranberries, almonds, but not other salicyliates, and I was only positive for peaches. We only eliminated those. We both improved greatly--my son less fidgety, me more energy. I think that different people are allergic to different subsets, so I don't like to restrict more than needed. If you have both no reaction and a negative test, I don't see an issue. Claire

A friend sent me a link from the Dr. McCandless board. Sorry no link. This may explain why Pfeiffer didn't give Nancy the methalothonien (sp). Remember, this basically is used for autism and we are looking at it for other issues as well. This all of course relates to the MT promotion therapy, which they claim can resolve the diet restrictions, mercury and yeast issues. Claire ------------------------------------------ Methylcobalamin: We have learned about even more benefits of the methylcobalamin than we knew at the last conference, and the evidence is that 90% of our kids benefit to some extent, some remarkably so, with injectable M-B12, and many of them without other treatments per Dr. Neubrander's experiment of giving it to children immediately when they first come see him and during awaiting the results of the other routine testing. I believe every child deserves an adequate trial of this treatment, and evidence so far is that other ways of getting it may be somewhat beneficial for a few kids, but the difference in the kids getting the injections is impressive. Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine's metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can't push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH. I would suggest this not be used unless your doc recommends and supervises it. Further notes from Dr. Deth re high dose methionine: "There are overlaps between methylation problems in schizophrenia and methylation problems in autism. One of the most robust observations (replicated in ten different studies) is that the administration of high doses of methionine can elicit acute psychotic reactions in schizophrenics, while having no such effect in normal individuals. Increasing methionine levels above normal would impair dopamine-stimulated phospholipids methylation, since the D4 receptor and methionine both compete for MAT activity." On this same topic, Teresa Binstock writes: "The fact that gastro/nutritional pathologies might alter these (methionine) pathways is exciting. The possibility that, by altering fetal nutrient profiles, placental irregularities might alter these pathways is exciting. But willy nilly rushing forth to therapize a specific child by manipulating these interrelated pathways seems fraught with risk for at least a small subgroup. Manipulations at the level of histones and epigenetics ought be highly respected because such manipulations are altering a fundamental element within mammalian life (the histone and epigenetic modification). Another notation by Dr. Shaw offering another reason for possible toxicity: "Methionine can be converted by abnormal gut flora to methanethiol, one of the most toxic gases there is. Methanethiol has been implicated as a significant factor in hepatic coma. The toxic effect of methanethiol is amplified in the presence of elevated ammonia which has also been reported in autism by Drs. Boris and Bradstreet." ...A very recent article in Am J Med Genet, 2004 May, 15;127B(1):51-9, Methylomics in psychiatry: Modulation of gene-environment interactions may be through DNA methylation, by Abdolmaleky, HM et al from Dept. of Psychiatry, Harvare Med Sch at Mass Metal Health Center, Boston, MA. Some selected notes from the abstract: Fine-tuning of neuronal connections during development is regulated through environmental interactions. Some fine-tuning occurs through changes in gene expression and/or epigenetic gene-specific DNA methylation states. Known epigenetic mechanisms include RNA inhibition, RNA modification, and DNA rearrangement. Exposure memory expressed as epigenetic DNA modifications allows genomic plasticity and short-term adaptation of each generation to their environment. Environmental factors that affect DNA methylation include diet, proteins, drugs, and hormones. Induced methylation changes may produce altered gene response upon subsequent hormonal stimulation. The gene-specific DNA methylation state may be preserved upon transmissioin through mitosis and meiosis. An increasing amount of data implicates a role for DNA methylation in multi-factorial psychiatric disorders. For example, 1-methionine treatment can exacerbate psychosis, while valproate, a drug producing hypomethylated DNA, reduces such symptoms. Authors state that more studies are needed to define the role of methylomics and other epigenetic phenomena in the nervous system. Best wishes to all! Dr. JM

Hi Ronna, Our DAN doctor said that both capryllic acid and nystatin stayed in the gastrointestinal system and thus were very 'safe'. If Great Smokies can get a culture of the yeast, they actually test to see which is more effective for it. Unfortunately ours didn't culture. I read that Nystatin without diet change didn't do much--the only one that claims less diet change is needed is Threelac--but ufortunately, it doesn't have any studies published for yeast. Some positive study on allergy impact though. I tried capryllic acid--for my son and I, it made us both nauseous. But that is personal experience. I am now trying the Threelac that Heather found so successful--it too is ordered over the counter. It has been about a month. I won't know what it did until after my next test in another month. My son is on Nystatin. But again, no follow-up tests yet. Phyl has mentioned oregano oil and I have read that is very powerful. I feel it is trial and error. I would be very paranoid about making the yeast worse with the antibiotics--though I am like you and would absolutely do the antibiotics under certain circumstances given my son's past reaction to tonsilitis (fears). Though now I wonder if in part it was the pyroluria acting up during the illness. In any case, the antibiotics cured the fears 3 different times. I would probably make sure I did the probiotics 2 hours after the dose of antibiotics, 2x/day (as my doctor had me do with my son when he was on antibiotics once. Plus the oxygen/amino acid drops in the water. Plus avoidance of sugar during the round of antibiotics. I don't have the data to recommend which one to try first, but I might go with nystatin for my son first. I feel that it may be making a difference. My son is allergic to the Brewers Yeast in the Threelac, so that one would be my second choice for him. For me, I am trying the Threelac before the nystatin--I convince our doctor that I wanted to go this route first--of course no prescription is needed. There really isn't a right or wrong on this one. I think you will find which one your son tolerates best and responds to best. I have 5 books on yeast and anti-fungals and spoke to a woman at Great Plains in the lab and have never gotten any consensus on which antifungal. They almost all agree on diet though. Sorry I don't have a true recommendation, more of a thought process. Like Phyl, I know how tough yeast is! Claire

Capryllic acid is also good for yeast. Supposedly can be as effective as nystatin, and it is sold over the counter. Avoid sugars, refined carbs, molds and vinegars, and active yeast (the kind in most breads) There must be library books on this? If not, there are a ton of candidias sites out there will full diet plans. What does gf mean? Claire

Caz, You are right that most others here saw the difference within a week. Jennifer M said on another thread that it took 2 months for her. However, if your IgG tests showed no sensitivity to wheat/gluten or milk/casein, then this may not be an issue. 50% of kids with autism have wheat/milk issues, so 50% don't have issues. If it were me, given the IgG tests showed no issues, I would now reintroduce milk one day and WATCH to see what happens for a few days. Then one week later, add wheat and WATCH again. This is how rotation diets work--you test it. If you don't have 2 weeks due to vacation ending, try waiting 4 days between them. For your 12 year old, have you ever tried (regulars please prepare yourselves for my broken record)...removing TV/computer/gameboy for a week? I know, I know, very very hard to do. But 9 of 10 of us who tried this noticed a significant improvement. Maybe best done after vacation when he doesn't have so much free time... I think this just gives you information--it doesn't have to be forever., if it works, you can switch to lower action games and an LCD monitor... Maybe this is the trigger and not diet. I think diet can be tougher than computer restrictions! At 12--would he rather tic than give up computer games for a week? Claire ps Have you done the spit test for yeast overgrowth for your younger son? Have your child spit FIRST thing in the am (before eating or drinking) into a glass of water and see if the spit floats or sinks. If it floats, yeast probably isn't an issue. If it sinks, or has stringers coming down, it is likely an issue. The Great Plains OAT test can confirm this.

Evangelia, I shared your story with my husband, this is soooo wonderful. Thanks for your kind words. After a year of posting here, some of the patterns were becoming so clear. I took the liberty of posting it on the "1 week to fewer tics" thread, since you actually did multiple things at once. I think this has by far the best odds of getting early results. If at anytime you want this deleted, please let me know. Or you can repost it yourself and I will delete mine. The goal of that thread is for people to list complete programs that worked--and yours went beyond just food elimination which is what I thought you did. In an ideal world I would like a thread that had each of our success stories. You are correct about the yeast. Actually most of us treat for yeast. Heather had remarkable success with Threelac, and I personally think, as do Ronna and Heather (and others?) that healing the gut is one of the steps needed formost of the kids who have food sensitivities as a symptom. Certainly Dr McCandless talks about it in "Children with Starving Brains". I need to update my summary post to pull in a comment on yeast. The tricky part there was that I was hesitant to recommend supplementing for something that might need to be tested for first. Even though I agree with you on how important it is. Mercury is the same for many of us too. We watch sugars closely, and I am trying out Heather's advice on Threelac--my own yeast is high and 'stubborn'. I took the Great Plains OAT test, but I have posted on the saliva test you can do at home for free. Spit into a glass of water first thing in the morning before drinking water and see if the spit floats (no yeast) or sinks or has stringers floating down (yeast). Your story on how you explained it to your son is wonderful, and I for one, think that a broken Television does no one any harm and can save a lot of unneeded emotional upheaval. I am glad you are working on the yeast--that is needed for healing. You might also check for elevated mercury, because if your child has that, it will interfere with gut healing. If not, then you are no worse of for checking. Our doctor just supplements with antioxidants for it--no chelation--he says it is too risky, and the antioxidants are the natural way. Heather used NDF. I am sure if your son has it, you will do your own research and determine a good path. By the way, pear juice, xylitol, erythritol and stevia don't feed yeast. Honey and molasses too. I give a glass of diluted grapefruit juice (half water half juice and a half dropper of stevia), and sliced pears. That is great to hear that the dustmite removal makes a difference for tics. I know for me it makes a huge difference for allergies, so I shouldn't be surprised. Just as reactions to foods vary from hives, to respiratory to tics, why not dustmites? Thank you so much for sharing--it is like that movie "Pay it Forward". If all of us who learn from others here pay it forward, then we WILL positively impact not only the lives of our children but the lives of other children. I have learned from so many here. God bless you for what you are doing to help your child, he is very lucky to have you for a mother! What a remarkable mother you are, doing all that for your child at once. I KNOW how much work is required. Claire

From Belinda--someone who actually 'pulled it all together' and tried multiple things at once for her child with great results over the past month I think this is really a first--most of us on the board did trial and error with a number of things over a much longer time period. She points out a glaring omission in my summary post here--more discussion on yeast. I am updating my intro post for this feedback. Yeast is an issue for MANY of our children, and is important for long term healing. I hope others will take what she did to heart--especially those with younger children. The transition is so much easier with them. Again, this isn't forever--it is to be done initially to proove to yourself and your child that lifestyle can make a difference. This is a first step toward healing. Thank you Belinda, this story is wonderful. Claire ------------------------------------------------------------ http://www.latitudes.org/forums/index.php?...t=15entry5374 Posted: Oct 17 2004, 02:48 PM ...I will summarize what I have done so far. Well, I am on Day 25 of my food elimination diet, and my son's tics are nothing like they used be. Claire, along with all the good advice you collected from everyone, I had read that yeast could be a problem so I eliminated as much as possible to see results. Your surveys REALLY helped me establish a direction. I can't thank you enough - my despair was so great. Just to give you some background, my son is 5 1/2 and his tics were very large! He would jump up and wave both of his arms in the air (this tic started when he kept jumping to re-secure his back-pack school back on his shoulders). It was very distraughting to see him do this every few seconds!!!! He had other smaller tics since last year but they were no big deal. With school starting, I was very worried about the social impacts on him. Now, he doesn't jump at all, and he doesn't wave his arms up. He still has a few smaller tics here and there (more tics when I test his diet) but nothing like before. From the start I eliminated: ----------------------------------------------- TV right away - I told him that it broke. We still have it off - TV wasn't a big deal since we didn't watch too much of it anyways. (except a few weeks prior, his grandparents bought him a Veggie-tale video that he loved and his TV watching increased more than usual) I eliminated sugar (incase of a yeast situation) - I used clover honey (Today I am switching this, because I just discovered that clover honey has high salicylate content) ooops! I now bought date sugar, and I am also going to try unrefined organic cane sugar. I remove all artificial additives - and I mean ALL (except I have allowed Jeff's recommendation of Pringles Original - just to have some kind of junk food around for him - and us!) I eliminated all the salicylates - I can't believe the difference of when he has grape juice or an apple! We went apple-picking and he ate an apple, he ticced almost 20 times in minute, all over again. I, also, always know when the afterschool daycare has given him something he is not supposed to eat (before I even ask him) because he tics, otherwise he is pretty calm. I eliminated the most common allergies that you compiled: Wheat, corn, eggs, and I use Lactose-free milk. I tried vanilla rice milk, and vanilla soy milk, but I found both to increase his tics. I have allowed soda-crackers(wheat) and cream-cheese. I don't give him any juices - only water or lactaid at this time. He used to drink grape juice VERY often (4-5 times a day). Around Day 13, we bought a new mattress, a new pillow, and the dust-mite protection casings around the mattress and pillows. We saw an improvement right away. We are now looking to change the carpetting and buy a HEPA filter. I have been giving him BIO-K daily for friendly bacteria (incase of yeast), and an allowable vitamin C, and a multi-vitamin. I was giving him calcium liquid, but then discovered it was diluted in apple juice so I stopped. I have not used any yeast in my baking..... the feingold prog says that regular yeast is fine - but not the active-rise yeast. So I am now thinking of getting back to my real breads and not the disasters that I tried to call bread. ------------------------------------------- You might wonder how my son agreed to all of this? I told him that his body was trying to get our attention by doing these tics because it cannot tolerate some of the foods that we are giving it (even though for some people it is okay). I told him that I was glad that his body was "speaking" to us so that we can figure out what his body was trying to tell us. It is like a "Scooby-Doo" mystery and we are the detectives that will solve the big MYSTERY! We also have talked extensively about chemicals in food and how nasty they are. He bought into the idea right away! I can tell you the biggest change in him (aside from the tics) is his demeanour! He is just not the same child anymore! He is no longer fidgety, he doesn't get as hyper when he plays, he is so calm and retrospective, he is not always afraid like he used to be, he is kinder and gentler! I could go on....! I am very excited because tomorrow I am going to get the results of his IgG and Essential fatty acids blood tests. I also asked them to test for gluten allergy and test for any damage to his intestines. I will have a clearer picture of what I am dealing with tomorrow!!!! These tests are costing me a bundle (I live in Montreal Canada and the naturalpath is shipping the blood to his preferred lab in the USA (with an added premium for his time). I apologize for writing so much, I just hope to help anyone else that is new. I am still new at this and I am learning and learning and learning every day! The biggest thing that I am learning is patience. I am definitely on the right track thanks to everyone who has taken the time to write what has worked for them! Thank you! I will let you know what happens soon! Evangelia ---------------------------------------------------------------------

Doris Rapp discusses this type of technique in her second book (energy treatment for allergies and pushing the arm down..). She says she doesn't understand it, but it seems to have a good effectiveness. My son won't try these things...so I can't comment on personal experience. I agree with you both that the yeast thing is ongoing! Claire

Kara, It isn't a direct link. Use of corticosteroids/steroids can create elevated yeast (as can frequent use of antibiotics). You can do a google search on corticosteroids + yeast and find this link mentioned in many places. However, the link between elevated yeast and tics is more anecdotal. By their definitely the alternative doctors we see are dealing with things that are not well-studied and accepted by the mainstream medical community. But the doctors on the thread at the top of the forum regulary test for elevated yeast as a cause of neurological issues. With elevated yeast, minimally the gut isn't healthy and nutrients may not be absorbed properly. You can do a google search on yeast + tics to find this. I started a thread here with a case study link on yeast and tics that Chemar found--it is somewhere in the archives if you go page by page. Heather had a remarkable improvement in her childs tics from yeast treatment. Phyl noticed improvement also. Heather used Threelac. Somewhere I posted the spit test you can do at home --a free yeast test of sorts. This is only one possibility of course. A good doctor will run a number of tests. Good luck to you. Claire

Kara, Ronnas is right that the sinus issue complicates things. I am a bit concerned about the steroid use. Repeated use of the steroids can contribute to issues which contribute to tics. One of these is elevated yeast. Great Plains has a test for this. As for the prior food allergy tests coming up negative, the standard test that most doctors use is an IgE or RAST blood test for foods. This only covers immediate reactions--you would probably know about these anyway, as your child would get hives or excema or stomaches.... For tics and other neurological issues, environmental and DAN doctors do an IgG test for delayed food sensitivities. www.elisaact.com has one for example. With the sinus issues, they can be caused by foods also--milk is a known culprit. Peanuts of course can cause respiratory issues. I like the tests because it takes the guesswork out of it. But if you have a young child such as Ronnas, they also have elimination diets to avoid the formal testing. Good luck. Claire ps Hi Ronnas--it is nice to see you posting again! Sorry that you had another session with your son. Glad it is resolved now. I do worry about strep reoccuring--December seems to be the kick-off month...

Thanks again all. I am taking these thoughts to heart. Claire

Phyl, No, I hadn't read this about celery, I will check it out. FYI, I found a few sources that show that adrenal exhaustion can lead to food sensitivity and yeast issues. Claire http://www.biodia.com/test201.html Physiology Cortisol, which is best known for stimulating gluconeogenesis, is essential for normal glycogenolysis. Cortisol affects the heart, vasculature, blood pressure, water excretion, and electrolyte balance. It mobilizes protein stores in all tissues except the liver; it mobilizes fatty acids from adipose; it is the precursor of cortisone and acts as an anti-inflammatory; and it is the primary hormone directing immune function. Cortisol can stimulate or inhibit gene transcription, promote apoptosis, and affect bone metabolism and calcium dynamics. It affects behavior, mood, neural activity, and a variety of central nervous system biochemical processes. Cortisol affects the eyes, gastrointestinal tract, reproductive function, and the production and clearance of other classes of hormones. It is a major marker of the complex control loops regulating the sex hormones. The general effect of excess cortisol is usually stimulatory and catabolic; a deficiency of cortisol usually results in a slowing of physiology. The salivary free fraction of the adrenal cortisol output is reported because of its high clinical correlation to accurately assess adrenal functions. To determine the cortisol circadian rhythm, the sum of four individual cortisol levels is taken at specified intervals throughout the day: in the morning between 6 and 8 a.m., between 12 and 1 p.m., in the late afternoon around 4 or 5 p.m., and at nighttime between 10 p.m. and 12 a.m. In the presence of stressors, the body almost immediately attempts to increase cortisol levels. This increase is associated with both endocrine and autonomic responses in preparing the body to defend itself normally. However, elevated cortisol levels for extended periods negatively affect virtually every aspect of physiology. For example, it becomes more difficult to maintain proper blood sugar levels; to slow down for rest, recovery, and repair; to get good quality sleep; to balance other hormones; to maintain mucosal immune integrity; to maintain bone mass, to produce effective general immune function; to effectively regulate inflammatory processes; or to detoxify the body. Without proper intervention, continued high adrenal stimulation can lead to adrenal exhaustion and lowered cortisol levels. Eventually adrenal or cardiac failure can occur. DHEA is the major precursor of testosterone and the estrogens. It becomes active at puberty. The more stable, sulfated form of DHEA is DHEA-S, which provides a more reliable measure of DHEA levels than DHEA itself. We report the average of two DHEA-S values--the one taken between 12 and1 p.m., and the other between 4 and 5 p.m. DHEA is an important modulator of many physiological processes. It promotes the growth and repair of protein tissue (especially muscle), and acts as a counter-regulatory agent to cortisol, negating many of the harmful effects of continued excess cortisol. When increased demand for cortisol is prolonged, DHEA levels decline. DHEA then is no longer able to balance the negative effects of excess cortisol. Depressed DHEA levels serve as an early warning of potential adrenal exhaustion. A chronic imbalance between adrenal stimulation and cortisol and/or DHEA output is associated with a multitude of both clinical and subclinical systemic disorders, some of which are listed below. Chronically depressed DHEA output results in an imbalance in sex hormones. Abnormal cortisol and/or DHEA values (either elevated or depressed) result in a decrease in the activity of the immunocytes that produce secretory IgA (sIgA). SIgA provides a mucosal first-line immune defense against virtually every pathogen, including parasites, protozoa, yeasts, fungi, bacteria, and viruses. SIgA also provides a normal immune response to regularly encountered food proteins. Dysfunctional mucosal immunity is associated with an increased risk of infections and of adverse food reactions. Clinical Use The degree and timing of cortisol imbalances provides the healthcare professional with valuable insights into the nature of causative stressors, and allows the practitioner to formulate remedial protocols. Readily identifiable inducers of increased adrenal stimulation include stressors such as tissue damage, inflammation, pain, and mental or emotional stress. Other significant physiological stressors can be subclinical, and include intolerance to the gliadin fraction of gluten protein, lactose or sucrose intolerance, glycemic dysregulation, delayed food sensitivity, and the presence of parasites or pathogens. Additional testing may be necessary to rule out the possibility of these and other factors interfering with digestion and absorption. This type of problem could likely impede such fundamental and critical processes as the ability to absorb water, the assimilation of essential nutrients, and the maintenance of normal blood sugar. Chronic dysfunction of any of these processes is a sufficient cause of adrenal exhaustion. Physiological pathways, organs, or systems identified as being the major cause of some other disorder may concurrently serve as causative agents in adrenal exhaustion. In most cases, regardless of the priority given to another pathway, organ, or system as being dysfunctional--and virtually regardless of the condition identified--adrenal exhaustion resulting from excessive stress must be addressed and rectified in order to restore normal physiology or function.

Transient tics isn't a form of Tourette's, it is a different tic condition on the spectrum. It is the mildest form of tic syndromes, not TS. Good for your child, I am so glad he is doing better. Did they completely resolve on their own, ie you didn't do any intervention? No one can say the future for sure, just keep in mind that 20% of children (about 30% of boys) get transient tics, and only 1% get TS. So the odds are terrific that your son will just have transient tics. There is no point in worrying about this--his odds of getting TS aren't much different than a child with no tics. Good luck, you must be relieved! Claire

From the Townsend letter: http://www.findarticles.com/p/articles/mi_...43/ai_109946562 "Symptoms of Adrenal Insufficiency Low adrenal function can cause, among other symptoms: * Fatigue * Recurrent infections * Recurrent sore throats and difficulty shaking off infections * Poor response and "crashing" during stress * Achiness * Hypoglycemia * Low blood pressure and dizziness upon first standing ... Dr. Jefferies has noted--and again, my experience confirms his finding--that most people with hypoglycemia have underactive adrenal glands. This makes sense because the adrenal glands' responsibilities include maintaining blood sugar at an adequate level. Sugar is the only fuel that the brain can use. When a person's blood sugar level drops, they feel poorly." --- Claire ps, I was diagnosed with hypoglycemia 20 years ago--I still don't do well with much sugar. I have low blood pressure, low body temperature (low temp also associated with yeast) and used to get dizzy from standing. My son now has low blood pressure and gets dizzy whenever he stands.

Lulugirl, Thanks, I didn't know this! Here is the phone and website for others (I got the number from your information): 425-251-0596 www.diagnostechs.com It is called the adrenal stress test and as you say is a saliva test that they mail straight to your home with a practioner order (doesn't have to be an MD). If positive, they fax you a plan with the results. Claire