Claire

Does anyone know if these sensitivities (e.g. tomatoes) show up on a RAST test? If so, maybe efgh could do a RAST test before eliminating his favorite foods like ketchup. I am trying to get one for my son for wheat for his excema (and candidas too by the way)--for the same reason that he loves it so much.

Jean, How old is your son? If he is in elementary school, you can probably stop the computer lab. I told my son's teacher and she did. She had noticed the tics and was worried for him, so she was quite willing to oblige. I got him an electric typewriter to type up his reports, and bought an LCD monitor to bring to school when he needs it. If he is in middle school/high school, then I don't know, we think about getting him a laptop for that (no flicker screen), but worry that it will be broken or stolen. Actually, my most likely bet is to have him not take the class. In our public school district, we have to sign permission slips to use the computer. I just said NO. It took a few times to get people to remember though. But my son's school is small, and many children have 'issues' (the sign of the times, oh my), so this is not a problem there--he is one of their easiest students! I just got the Feingold material recently, and I wonder whether the triggers set off fears. It drives me nuts. Whatever we do at home, their are basketball games where the parents brings snacks with artificial colors, and daycare gives colored candy. I finally told the daycare man (whom I love) that he couldn't bribe my son to work with candy anymore, nor give him Costco crackers with preservatives! I think he thinks I am a healthnut, or a hypochondriac about the artificial stuff. I do have to read the Feingold book more, as I can't tell from labels what is cool and what isn't. Watching the parental stress level is key--oh these sensitive kids, what we do to them in spite of our love sometimes. We have been remodeling off and on for years (it never ends ugh) and the constant pounding and chaos and dust cannot be healthy for him. ps, Chemar is the epsom salts expert, not I! My son takes showers....

I know how you feel about TV--I feel the same way about TV/Computer games from this, though I personally do my own work on computer all day long. Whe my son used to tic, it was when he was idle also. www.bestbuy.com has the 15" Samsung SyncMaster for $449 (TV and Computer monitor). That is the cheapest I have found--and it is not cheap by any stretch! So I can see it being tough to justify unless you were convinced this was the issue--it took us 6 months to completely validate this with my son and justify buying one, and his is completely correlated,. whereas your child's may not be. If you have a laptop with a DVD player, perhaps he could watch a movie on that a few times, and see if he still tics. That's what we did. Does your child swallow the supplements? I have heard nothing on fish vs flaxseed oil comparisons, though certainly there may be trace minerals other than the Omega's to impact tics. Claire

Guest efgh Work deadlines have interfered with my life lately! I was up til midnight for a week. I understand that some children may tic a bit during TV because they are relaxed, but your son's sound WORSE then. (Plus your comment on fluorescent light really makes me wonder whether he has the same flicker sensitivity that my son does. Does he tic during or after computer also? I can't emphasize enough my experience with my son during TV exposure . The TV/computer flicker set off his tics and he is fortunate enough to be completely tic-free without them (though he doesn't have Tourettes)--he has had a number of 6 month periods with no tics until somehow he has an exposure again. He first started having tics just before his 8th birthday (and they were getting worse), and TV/Computer avoidance completely eliminated them--we also got rid of our fluourescent lights. However, it takes him a full-week sometimes for the symptoms to clear, and if he starts watching it again (on the normal TV monitor vs a flicker free one), it can take a few days for the reaction to build up again. If you can't get your child to avoid TV for a week to test this out, I highly recommend buying an LCD TV/computer monitor combo. We bought a 15" Samsung SyncMaster at BestBuy for $450 (inc. rebate) at the beginning of 2003. You do need to dim the screen and have him watch TV from far away in a well-lit room. Maybe you could rent one for I still post here and read on tics because until technology reaches a point where the schools have more modern computers, I need to find out how to minimize this sensitivity. e.g Phillips is making a 100 hz TV --vs today's 60 hz, that shouldn't cause these problems--it is the lower frequency ones that cause issues). My continuing concern is that continued exposure to this trigger while the brain is developing may cause permanent neurological change, in the same way that neurotherapy can cause permanent neurological improvement for developing minds. I have seen no studies on this, so I won't pretent this is a prevailing opinion. Good luck, Claire

Nancy, How many sessions did Neuromodulation Technique take? Did your child have to avoid the things he was allergic to? I feel fairly certain my son is allergic to wheat. He developed excema in the last few months (I read 80% of childhood excema is from food allergies!), and I took it away for 4 days and it definitely improved, then we reintroduced it (but less a day) and it got worse again. But he can't stand giving up his favorite food--do you think this technique requires it? Also, how do I find someone to do this? Claire

IRLEN feedback My son took the Irlen test this week. The women said he had a little light sensitivity but not much. Most of the test was focused on whether the black and white images he saw were distorted (presumably due to the light issue) and they weren't (which I knew already). He did like the blue and green overlays, so I am having my mom send me the ones I ordered for her (she saw no difference), in case he likes them for reading. But again, his issue is with the CRT computer--he really is fine with the LCDs. Even so, I am glad we ruled this out. Next I am going to have an opthamologist do a full eye exam, PLUS some visual tracking checks. I don't know, he is reading books multiple grades above grade level and acing tests without complaint, so I still don't see how he could have visual tracking issues and us not know it from his academic performance. But this is a harmless, non-invasive test. Claire

This is great stuff, thanks! But I thought that the PANDAS tests (as opposed to the strep tests), were just to see whether the person had developed the 'bad' proteins that attack the healthy brain cells, ie the potential marks of a secondary auto-immune issue from the strep. ie the immune issue is the problem well after the strep is gone. Can you please clarify? (I have read that proper treatment during the first episode can avoid a more permanent problem) SOMEWHERE in this link, there is some study where have of the kids with tonsil infections didn't test positive for strep and still had the PANDAS symptoms. http://www.neurotransmitter.net/pandas.html This could be the inaccuracy of the swapping for the strep test that Ronn mentioned--my husband tested positive for strep, and my son got the sore tonsils at the same, but he said the nurse 'missed' his throat with the swap--he is very attuned cuz he hates that swab--sure enough, his test was negative, but the antibiotics cleared it up immediately. Plus My ENT says their are lots of bacterial infections in the tonsils that do require antibiotics, and strep tests only ID one of them. Finally, my ENT totally agrees re the probiotics--he takes them himself with pills for the complete strain. Claire

Chemar, Thanks for the comment on Natrol capsules being small. I will check them out. How long did it take for your own son to feel better from them? I am sure it varies. Knowing that the strep medicine would clear his fears in 2-3 days during his recent strep-induced fears helped him deal with it. Claire ps, as I mentioned I edited my last post. I agree with all that you said, and I love both of those quotes!

Wow, wow, isn't it great that we can stick our necks out with some of these ideas without worrying about being teased--then we really do find out what worked for people. Ugh, my son said 'no' about this. I don't know what to do--eliminating wheat for a few days (now rotated back in the diet in smaller amounts--not the official way though) and even discussing taking supplements--he is reacting in the other direction. Odd, because he never complains about the computer, and lately has forgotten about his sessions on his 'computer days'. And he likes the neurofeedback. I hate forcing things with him, especially when they are 'experiments'. Ugh. Well, he did agree to go for an Irlen test--maybe cuz it is during school! Claire

Thanks Jennifer--good point about computers--I sit in front of one all day for work and wonder about that. I will look into the magnets--for a small price, what is the harm--no one can see me! As you know, my son gets minimum exposure right now. I don't know how he would react. Claire

Nancy, I saw your post on neuromodulation before--I am very curious for your spring 'test'. I think my son has food allergies--keep us posted please. This sounds like the easiest way to get past them--vs elimination diets... Claire

Chemar, Well I talked to my son about 5HTP again and bottom line, I have decided not to push it (again like your son and video games). I can restrict computer but I can't 'force' him to swallow--or should I say I won't. So I am dropping this for now, and won't try again until/unless the next time. Fortunately, now that the movie exposure and recent strep are past, he has no symptoms again--no more experiments--I want another 6 months to a year of peace (I can't completely avoid strep). Claire

Hi Sheila, Thanks for both pieces of information. I did read that a B2 deficiency can cause a sensitivity to light (from research when I was investigating my son's excema and new cracks at the corner of his mouth--also potentially caused by a B2 deficiency. Anecdotally, one poster on another board said both their child's excema and myclonus from fluorsecent lights improved. Now I need to research the balance needed for absorption, as I heard that B's and zinc and mag. all need to be in balance. Fortunately they have chewable vitamins with a little extra B's. Claire

Sheila/Chemar I do plan to do more follow-up re Irlen. Life is just so busy with deadlines! I have never heard about braces and tics, except for a comment that each of you made. Any links on this (or the name of an old Latitudes on it--now that I have received them). Actually, after learning re the occular issues of TS kids, I am wondering whether the motion of the movie may have related as a trigger (they had some visually intense scenes. From Lara: http://www.findarticles.com/cf_0/m2250/12_...054/print.jhtml Sheila, I am going to follow through with trying to determine how to deal with the Irlen question vs the vision/movement question. Do you have any thoughts--it sounds like two different doctors--oh man, my son will think I am a hypochondriac with so many things to try out. I am putting off the alt. med visit (and reading the Rapp book and the Feingold materials first) to investigate the visual aspect--either Irlen or the therapy. Helen Irlen just didn't seem to have a very strong gut reaction to this, though she did say I could investigate if the sunglasses didn't work. The Wilkin study itself is promising--but I only have the headliners, no details unfortunately. So I will follow up. Claire

Hi Ronnas! It is nice to see you there! It is quieter there in terms of the number of people discussing, but if you look at the number of views, it is quite high, so I feel like lots of people are interested in/benefitting from the conversations, even if they don't join in. Never any debates there either--since the board is composed of people actively looking for alternative methods. Are you the one with PANDAS expertise? If so, someone on Latitudes is asking, but that part of the board gets very little activity--maybe you could post one of your links? Poor woman, her daughter is getting the strep reaction right now. http://www.latitudes.org/forums/index.php?...st=0entry1307 It breaks my heart re the lack of awareness of Pediatrician on PANDAS.

guest/Chemar Guest My son has not been diagnosed with either (he even asked his own pediatrician and described his symptoms, but they were too minor and only occasional). His symptoms are tics and compulsiveness (which is associated with OCD, but they must reach a certain point for an official diagnosis). He gets both types of symptoms from computers/TV/movies only, so we avoid the triggers. The movie was an 'failed' experiment after almost 2 years to see if dark sunglasses helped minimize the trigger--this was one of the two worst tic/compulsiveness episodes he has ever had. I am investigating ways around pure avoidance because I think this will be impracticle over time. Chemar, I absolutely get the tic/compulsiveness correlation and overlap. I wanted desparately to try the 5HTP the other night with the lip biting tic. But he just absolutely wouldn't let me buy the pills--remember how for your son no video is more stressful than the tics from the video? Well that is my son and swallowing pills! He tried these tiny mini-m&M pills once for something onceand it took 1/2 hr to get them down. I told him your idea re the straw but he would have none of it. Sigh... Whole Foods has a liquid version of both 5HTP and St. John's Worts--but the taste I am sure will be awful. Maybe a plugged nose and a sweet drink chaser? I want to see which is the lessor of 2 evils for him. If/when something occurs again, I want them available in the house. He is totally game for chewable vitamins that taste good, so I am giving him ones with 200% of the B's right now. The oils for a fatty acids don't affect the smoothie taste, so at least that is okay. Claire

guest, This link will do a better job than I can on neurotherapy--written by a pioneer in it. http://www.brianothmerfoundation.org/emerg...ingfrontier.htm

My son's tic from the movie is gone. Claire

I know that some like Jeff have successfully tried the Feingold diet for their kids, but the information is buried somewhere, and I am hoping that this will make it easier to spot. I am really committed to eliminating additives and preservatives, and have signed up to get Feingold materials, but here is my dilemma. So some questions: I have read enough about Aspartame to stay away, but what about other artificial or natural sweeteners, e.g. Sucralose, Manitol, Sorbitol, Saccharin and Stevia? Does anyone here have anecdotal experience, or know of studies on these? We have diabetes in our family, and I have never thought my son did well with a lot of sugar anyway. So we do smoothies, but he won't eat them without a sweetener. GUM In particular I am looking for a safe, no color added, no sugar added GUM--e.g. recently when has still been trying to distract himself from biting his lip' tic from that bad idea I had to try out a movie with dark sunglasses! With his braces, so chewing on sugary gum (even without artificial colors) is just a bad idea. Any ideas on brands or sources--particularly over the internet vs your own local store which I may not have here. Whole foods has no such gum. Trident has sorbitol but also has artificial flavors! My internet search came up dry, but then I don't even know what sweeteners are okay--given his lip biting, I can't wait for to see if Feingold has something listed. Thanks--Claire

Thanks Chemar! I will try it sometime. I was in a bind thinking of how to get him 5HTP and the St. John's Wort also. Only so much I can stick in a smoothie. Gloria

guest_efgh There is something between transient tics and tourettes call chronic tic syndrome. But vocal tics are often associated with tourettes. My son is 10 and he used to have a hard time getting to sleep every night. I find that exercise during the day makes a huge difference. Since you specifically mentioned that your son is sensitive to TV and the bathroom (does the bathroom have fluorescent lights?), I really recommend that you pay close attention to computer games, in case they are a trigger. For some like my son, yes, for others now. Especially at night when it can overstimulate before bed. Claire

Hi Chemar, So sorry for another question... What type of doctor did you find to help you with this--especially the OCD tendencies? Family doctor/Pediatrician, child neurologist, alt. med doctor, child psychologist, child psychiatrist, homeopath or your accunpturist/neurotherapist? Was he educated on these approaches, or did you do the research and he reviewed it? I would love to have some medical expertise to support natual methods but it seems to me that most focus on one approach (allergies, supplements, neurotherapy, pharmaceutical, cogn. behavior) and not the spectrum. Also, do the links that you provided (I will read them this week) discuss how 5HTP and St. John's Wort help to elevate seratonim differentlly from some of the drugs that doctor's prescribe? Thanks, Claire ps He still has the severe tic from the movie. With all this talk of experimentation re supplements on the other board, I feel so badly for 'experimenting with sunglasses at a movie' vs just avoiding the movie (It was my idea, he doesn't care about movies at this age). I can only hope and pray that this goes away in the same week that the other tics/compulsions do after normal CRT/computer.

Jennifer, One more--mostly anecdotal. Search for Tourette's--I think it is page 19. http://www.marksteinberg.com/writings/unre...chablechild.pdf

Jennifer re Neurotherapy, Sorry, I just saw your post tonight--somehow I didn't get or see the email notification on this thread! The best discussion on neurotherapy I found is here: http://www.brianothmerfoundation.org/emerg...ingfrontier.htm Basically, they use non-invasive sensors attached temporarily to the scalp to register the frequency of brain waves, which are visually displayed on a computer screen pictorally in a sort of low-tech looking computer game. The patient is rewarded with points to keep the frequencies in a certain range (dif. ranges for dif parts of the brain). ie playing computer with no hands. The child after a time finds the 'calm spot' in his or her brain, or the ideal place to function. The idea is that they then take this skill to their normal lives. e.g. for tics/ocd/anxiety etc...their brain starts to function more optimally. It is fairly accepted by the medical community for epilepsy, gaining much acceptance in some areas for ADD, and the TS/OCD successes are still more anecdotal and haven't been as well documented--it is a newer area of focus. Claire

Hi Chemar, From your post on another board, you said not to mix 5HTP and St. John's wort. Since both are on this list of yours, I assume that taking them at different times of the day is okay? Expert comments like your scare me because I feel like I am gambling here by not knowing proportions and timing. (neurotherapy worst case is a waste of money--I have never read of negative side effects). Needless to say, I will do lots more research before trying anything--I want to have it ready for the next time (somehow, I suspect there will be a next time). By the way, my son's fears have been gone 4 nights in a row now, hallelujah! We survived this round. Claire