Claire

GL&L, When you reintroduce the TV/Computer, please pay special attention...the TV/computer games triggered some compulsiveness in my son as well as tics. The effects of the exposure can last up to a week. After 1 month without TV/Computer, I would expect to see some overall improvement in tics, since you say you notice that they trigger them. (A few of us now have noticed this). But they are at the same level as before the restriction? Maybe it was offset by the dexedrine which I guess can worsen tics. I know I posted this on another thread, so I won't repeat myself. But I hadn't realized he went a full month without computer/TV. Does this include exposure at school? Claire

GL&L, It is difficult to ID the underlying causes without testing--more like systematic trial and error. This was why we got a DAN doctor. They have built up a body of knowledge of the most common underlying health issues that when addressed, can substantially minimize neurological symptoms such as tics, ocd symptoms, aspergers, autism and I think even ADHD. Since I work full-time (though from my home office), I didn't have the time for the expert research that people here have done--I did a lot, but there are lots of different approaches just for fatty acids alone. There are so many factors and my son didn't like a trial and error approach. Yeas, heavy metals, food allergies, vitamin/antioxident deficiencies, gluten, casein issues are just a few of these. Most of the tests (other than the blood tests) are non-invasive. ie there is a protocol that they use. Sure enough, they uncovered some issues, and we still have some more tests coming. I suspected wheat allergy and/or candidas because my son craved wheat. I suspected metal toxicity (test coming Monday--we had to stop all vitamins for 4 days before the test) because he said he tasted metal (though I don't even know if there is a correlation there). My doctor suspects metal toxicity because his antioxidants are so low. As for his tics, I noticed they were worse during certain computer games. Amazingly, stopping computer (and unfortunately TV months later as he got more sensitive) completely eliminated them--every once in a while they came back, but upon questioning it always turned out that he had been exposed somewhere else that I wasn't aware of. Lately we watch a full movie (90 minutes) on the LCD monitor 3 times a week with no issues. Daily seems to be a problem. Claire

Marretts, Our EM doctor said the tight wool carpets are the best--like oriental rugs. I convinced my husband to do our upstairs with hard wood, thank goodness. We all have some reaction to carpeting: either to the dust, and/or with my son, more than just the dust, as I discussed in the environmental triggers thread. Everyone is different, but I know it matters in our family. Multiple exposures and reactions. Not to all carpeting, but I see no harm in hardwood anyway, saves a lot of guesswork. Where we live, it helps the home resale also. That is lower in importance, but helps to justify the expense as an investment. Good luck. Claire

Heather, The only time I discuss supplements is with good friends and his teacher. I say that he tested for certain vitamin deficiencies and we are supplementing to solve that. Claire

Hi efgh, My son is also outgoing, etc...the opposite of most things on your list. I had the same reaction as Chemar, that those traits may be a negative result should relentless teasing and being ostracized occur. Or Jennifers comment that that sounded more like Aspergers/Autism. I think we have gotten rid of the mold in our house, my son no longer gets upset easily. He does get mad if he thinks I will make him look foolish by bringing in different food to events or not letting him partake, but I think that is healthy for this age--he doesn't want to get teased for an over-protective mother. I am working on solutions to this--as you know, tonight is my experiment with bringing alternate snacks. I am hoping to turn the tides in my favor by bringing in icecream treats without artificial colors--more expensive--but the rarity of icecream should grab there attention They need to make the packaging look more like junkier food to fool the kids! To all, It occurred to me that my son's new step improvement during/following his illness may have been due to yeast die-off. He basically starved the yeast to death with a 4 day fast. Maybe this explains his extra intense illness and weakness too. Just a thought of course. Claire

Hi all, It has been a crazy week, trying to catch up with posts. efgh, my son's 'fidgety symptoms and touching habits are still absent. I can't say whether it is the vitamins, the fish oil, or the complete absence of wheat and artificial colors/flavors--the only diet changes since he got sick. Too many things going on at once. But it is just great for him and a relief for me. Again, no one but he and I even notice (his dad doesn't), but the bottom line is that he feels better. He still resents the no artificial stuff...only cares when we go someplace though. So for basketball this week I am buying extra snacks from Whole Foods--so that he isn't eating 'different' food. I have a bet with him that 2 other kids besides him will eat them. Mind you, they are still treats, just nothing fake and therefore 'unfamiliar' product names. Whole food's 'gatorade' for example. My son must go off all vitamins for 4 days before the heavy metal blood test. I took him in to get it and found this out, so had to put it off a week yet again! We are in a hotel while they paint our interior with low-odor paint. We go back Saturday, I must say, I am a little afraid he will have a reaction to the new paint. Claire

Chemar/Mustang Carole, What is wrong with regular salt? I know that health foods use sea salt, but I never knew why. Are there metals in the table salt? Claire

Hi juju, If you are going to do your own research, then Chemar's lists here on the site, supplemented by your own research are a great start. If your parents want to do this under a doctor's direction (vs your own research), please note that most doctor's are unaware of the value of supplements!! (Though Chemar says some are starting to see 5HTP). Here is a list of doctors who use natural methods to help a number of neurological symptoms, from tics to OCD to autism. They can run tests on you (urine stool, hair, maybe blood) and determine health issues that may contribute to OCD symptoms and tics. Then recommend supplements. www.autism.com/ari. Click on DAN on the left, then click on the list of doctors in your area. Please don't be misled by the word 'autism' in the title--that was the starting point, but the applications cross multiple disorders. My son only gets tics from computers and yet one of these doctors ran tests on him and found imbalances that he is correcting with supplements. Claire

Hi Frank, Chemar and I have both noticed the positive effects of exercise. I was told that it releases seratonin--needed for impulse control. I consider this absolutely vital for my son and the one thing my husband, my son and I all agree on. I push exercise over extra time on homework, and tell the teachers they are not to have him doing 'academic things' during lunch unless the class is required (like chess or something). What PANDAS symptoms does your boy have? You say the tics are mild, so I assume you mean more compulsions or obsessions? I am sorry that I have forgotten if you have mentioned this. I ask this because when my son had tics from computer, I never noticed it reducing them. I did however notice fewer 'compulsive' habits and much less fidgetiness--especially at night when he is trying to sleep. I know that it clears his head, but it isn't a 'cure' for everything. I am fully convinced of it effectiveness for ADHD. My personal feeling is that it is a 'crime' to bench the ADHD kids during recess for disturbing the class--this makes it worse. Instead they should have them run laps after the 'offense'. One teacher I know used to do this , it was brilliant--just what the child needed. Of course, he has always been basically ctive, so my noticings are more for the days that he doesn't exercise, e.g. rainy school days where they have indoor recess. Claire

jujubean, I consider your fear of medicines to be an intelligent choice, not an obsession. The people on this board all typically shy away from medicine. Either they have heard negative experiences, or have had them. Folks here are seeking natural ways to reduce symptoms. Chemar's 14 year old had remarkable success with those supplements. Each person is a little different, and it would likely take you some trial and error to see which ones worked for you. Unlike medicines, they aren't dangerous (of course you must take doses appropriate for your weight.) Many here have children with tics and OCD symptoms, even if not clinically 'OCD', and some have gone through a series of diagnostic tests for other health issues. There are DAN doctors who do this--without medicines--if you want professional guidance through the process. It would be a challenge for a 15 year old to navigate on their own. However the supplements might give you some early success and hope. Claire by the way, I use melatonin for my son also. only 1/3 mg a night.

Hi Lucia, Did you see the neurotherapist link? I sent emails to all of them until I found the one who claimed the most experience. Unfortunately, we stopped neurotherapy after about 2 months, so I can't offer you a positive recommendation. I don't think our lack of a positive experience should hinder you though. My son's situation is different, because his normal state doesn't have tics, just when exposed to computer. Well, in any case, it interfered with his concentration at school and was suddenly sleepy a lot. He had never had those problems before--ever. The practioner thought it was that he had an overresponsive system and asked me to wait it out. After 4 weeks of agony where he couldn't focus in class (I teach him math so I saw it directly, in addition to his complaints), I asked the doctor to change the protocol to correct his new 'add' type of reaction. The doctor told me that he would do so, but that the new protocol would risk creating tics in his normal state. Given that my son doesn't have tics in his normal state I was shocked--the implication was that my son's final condition could be worse than when he started. We quit that day. I am being upfront and direct with you here, but will delete my post once you respond that you saw it. I don't want to give ACN a bad name due to one experience, which is either unique to my son or our practioner. So the bottom line is that I found no one in the Bay Area, from Walnut Creek to Menlo Park to Saratoga claimed to have significant experience with tics (more incidental) and definitely not with photosensitivity. I am so sorry I don't have better news for you. On the other hand, I am very hopeful about the diagnostic protocols that people have discussed here. Have you tried an LCD monitor for the photosensitivity? Is this something you have observed over time (like me), or did you actually have him tested? Is he still able to watch TV etc? Claire

efgh, You get up too early! I got up early because wanted to delete my speculation on whether continued TV/computer exposure (for kids like my son that have a known reaction) might result in any long-term impact, but you already read it and commented. I did just delete it--I don't want my question be a false alarm or cause needless worry. It was just my speculation on whether it was possible to change what might be a temporary reaction to flicker that they outgrow, just as many ts kids 'outgrow' tics and kids 'outgrow' allergies to certain foods if avoided, into a more permanent reaction, by more continued exposure, just as neurotherapist claim to make permanent positive changes to brain function in ADD kids by repeated brain 'training'. For photosensitive epilepsy, any search on those words will yield a ton of results. It is a flicker-induced seizure condition and it quite rare. Only 1 in 4000 people has this condition, and just a small portion of epileptics. Claire

Nancy/Chemar Nancy, How old is your son again? I read your comment about Playstation. My son used to watch TV and play computer and video games without any problems. Then around 8 years old within a very very short time window they caused a significant tic reaction, which actually got worse over the next couple of years. ie first it was just computer (closer to his eyes), then later it was TV too, and then he tolerated less exposure to either before reacting, then the reactions involved compulsions as well as tics. This has always been a thought of mine: That most people don't realize video games/TV are a trigger because historically they weren't a trigger. (Just like newly developed allergies). I thought it was worth mentioning as food for thought that it didn't impact my son until a certain age. This may not be the case for your son, especially if your son is older. Chemar, I don't read Braintalk as often--I just feel like I know the folks here better. So thanks for that info, as I hadn't checked that link. I tried, but couldn't help but respond to the photosensitive epilepsy comment, as I just don't think all our kids who tic during TV and video games are having seizures. Statistically it just doesn't make sense to me (plus how can we all be blind to some lack of consciousness?), though that is what 99% of the information seems to focus on. Claire

Hi, Just wanted to update everyone on jcandkc who started this link. She and I email eachother off line occasionally. She told me that I could tell you that her daughter with the eyeblinking had eyelashes growing down into her eyes. After months of opthomalogists telling her that the lashes weren't causing the eye blinking, she was finally brave enough to trim them. Voila! No more tics. They decreased right away and then completely cleared up within 3 days, as the cornea got healthy again. She continues to trim them and it has now been 1 month with zero tics for her daughter, after months of non-stop eye blinking. )) She is not 100% relaxed yet. Her daughter reacted strongly to TV, and she isn't sure whether it was the eyelashes creating greater issues from staring at the TV and not blinking enough, or from some trigger from the TV. Someday, she will try, just not now. Claire

Hi Heather, Yes I was reluctant to do the salicyte elimination with the no-wheat trauma. I am only paying attention now due to his 'involuntary' food elimination We had a very painful evening this evening about the wheat. Our post-basketball tradition was corn dogs. Too bad though--tonight he didn't want to give me feedback on how he felt today. Oh well. One day at a time. He did show me his arms though. His excema is 1/2 gone now in 1 week of no wheat. Apparently even minimal occasional wheat kept it going strong. I thought for sure those would be permanent scars--it was very severe. Kind of a relief. And the gunk in his throat is gone too. Somehow I missed your son's potato allergy--I had never heard of a potato allergy. I am trying to get my son to eat them, with no bread! Do you do a calcium supplement? Thanks for the feedback on '2 days' possible for an allergy reaction. That is a long time. But sometimes with TV, it took a couple of days to impact my son too. Claire

So, I finally drop my son off at school this morning--we go first to his mailbox and find that lovely pink slip dated yesterday notifying us that strep is once again going around his class. I went to the teacher and practically begged her to PLEASE get him to wash his hands. I just can't imagine his system dealing with strep right now...Argh!!!! I just wish they had a hand washing routine. That's more important in his life than some obsure fact about California history! It makes me feel that I should have waited until Monday--but how could I possibly know? Just sounding off... Claire

Hmmm Frank, outgassing is a new thought to me, I hadn't thought of it good point! I never paid attention to the pillows. I have been going through the debate on 'natural cotton'--less issue with tic reactions, and synthetics--which resist dust mites more! Any thoughts on that. Oh dear, now I must worry about pillows too--thanks a lot Frank! Just kidding, I can see how it would be important, I just thought the dust mite covers solved the rest. Claire

Welcome Searching! Chemar in particular is the expert on supplements for OCD symptoms here. Others like Jennifer and Heather have had more luck with detoxing for heavy metals and reducing possible yeast which contributes to the OCD-type symptoms. (Chemar has done this too). That process is much much longer though. The DAN/Environmental Doctor visit and fatty acid and heavy metal detox threads here cover a diagnotistic and remedial approach that seems to be applicable for both OCD symptoms and tics. However, the supplements do seem to be different for each--again Chemar can clarify. I know that Chemar likes St. John's wort also, but says you must be careful taking it in combination with 5HTP. Sometimes she takes a few days to check in, sometimes not, but she is excellent at responding, so definitely keep checking back in! I myself am still in learning mode for my son, and can't help much directly. The one thing I can add is that fatty acids seem to show great promise with the impulse control issues affecting both. One can assess this by experimenting with flaxseed oil, fish oil or cod liver oil, or one can have a fatty acid evaluation done. Our insurance covered all this testing. Good luck to you--we are all full of hope here, based on the successes of others here! Claire

Bumping up for Searching. Claire

Hmmm...my son was fine all day today, then I let him watch another TV movie on the LCD monitor. Now he says he can 'feel' the difference. He watched 5 movies in 5 days (due to his being in bed for 5 days). I don't think he has watched that much in 5 days in his life, and we don't watch TV at all normally, he occassionally has 30 minutes of computer on the LCD monitor. So maybe today's and yesterday's reaction is the cumulative effect of TV watching over a period of days. I am putting this on this thread, because I have stated that an LCD monitor might solve the TV reaction problem, and it helps, but doesn't seem to allow unlimited time--at least for my son. I had never tested it before because I didn't want to get my son into watching TV. I have to admit, my son is being great about helping to figure this out. He hates that feeling, I think it is quite stressful, even if no one can see it visibly. Tomorrow, he is back to school, yes! Claire

Nancy, Thanks! I assume that the mag. taurate helps with the tics also, since you continue to give it? I surely like the dual purpose! Sorry about the lingering cough. I used to get that annually--and ultimately do antibiotics for bronchitis. Now I take echinacea, vitamin C and drink a ton of water at the first sign of a cold and get a ton of sleep (the only time I indulge in a lot of sleep) and it hasn't come back since. Vitamin C and water alone never worked for me. I did the echinacea with my son also at the first sign of a cold, and he no longer gets bad chest colds either. He used to get them every year also--always croupe or bronchitis In Germany, echinacea is the biggest respiratory remedy, but I mentioned this elsewhere I think! Too late now, but for the future (maybe you already do this or tried it in the past...) efgh, Did the mag taurate seem to help with tics too? Claire

efgh We give 1000 mg of Solaray Calcium Citrate with Vitamin D, as directed by our doctor for his deficiency. That is 4 capsules (big pills!) so I dump the contents into a smoothie. The taste is bland, it could be put into a lot of things--pancakes, juice--just not all 4 at once. Chemar, I think we all get conservative on things if we think it will help our kids. I was never an 'organic' type, nor no additives-type, but now I look at labels. Do they have stainless steel baking sheets? Where do I get stainless steel cookware that is affordable? Claire

I saw this great thimerosal/mercury post on another latitudes thread... http://www.latitudes.org/forums/index.php?...st=0entry2142 "THe UK Food Safety agency made a real gaff by stating the safe levels of Mercury in fish such as tuna and swordfish..... It turns out the level of mercury used in the MMR vaccine is 43 TIMES that allowed for an adult from FISH!...." and more... Claire

Robin, efgh, jean, ronna Robin, That is so funny about your son wanting to email me! You can tell him that my son gets a lot to substitute for the TV time. That his friends actually think he is a little spoiled because I took him to Great America (no. Calif. amusement park) 23 times last season (season's pass made it affordable) and I drive him to skate parks every weekend. Plus I have bought him a ton of CD's/book tapes, and comic books. I constantly set up meetings with his friends or invite them over. We play a lot of family games too. In other words, we 'overcompensate' for no TV. I told my son of your son's comment about sending me an email and he said 'All right!" Then I told him that your son couldn't have wheat OR corn and he said he felt sorry for him too (my son really misses wheat). Also please let you son know that while my son watched TV, he couldn't have chocolate (due to a ticcing reaction), but with the TV change, he can now have it without any problems. Anyway, soon enough they will have 100 hz TV's (Philips is making them), and everyone will have LCD monitors on their computers and it may not matter anymore. efgh, jean, ronna efgh, jean--Speaking of TV, How are your sons doing with no TV? Do they mind? Glad your son is getting better Jean, sorry you seem to have caught something too. My stomach flu should be gone by tomorrow morning--I actually ate a small dinner. My son lost 5 pounds, and he is a trim kid! (some is only water but I don't like that either) Ronna, How limited is Kurt's TV these days? Also, you said your practioner suspected leaky gut due to the antibiotics Did treating for yeast show some improvement, or was in more the food/TV elimination? My goodness, so many sons, just like the statistics say!! Claire

Hi Heather, Doris Rapp's website is http://www.drrapp.com/ I have both books and ordered both from her site (the old one showed out of print at my bookstore), but l "Is this your Child's World?" seems to me a better start. She covers food sensitivities and environmental triggers--carpets and paints and fumes and mold. I have been meaning to start this thread for a few weeks now anyway (not just for newcomers, I have a hard time finding everyone's recommendations later unless they are in the subject categories!). CARPETING D. Rapp discusses carpet as a factor. My son and I both notice that he has a strong reaction to certain carpeting--both on a trip we took, and riding in my husban'd By the way, I was 'idiosyncratic' and brought a semi-portable HEPA air filter on this last trip and let it run in the room constantly. Guess what? I have used one for 14 years for my dust/respiratory allergies and normally the charcoal outer filter takes 3 months to fill and this one filled in one week!! What a difference in my breathing--my chest gets so tight after a couple of days with carpeting and I felt just great this trip. Of course, this was secondary to my concern for my son. PAINT D. Rapp recommends using low odor paints. Well, we will do this now--we are repainting our house, but we were in a hurry to just get my son's bathroom primed so he could take a shower, and used normal paint. For weeks he got a strong reaction if he was in there for more than a minute. He even got 'flinches' from it, and he never gets them except for TV/Movies/Computer--it was that bad. His DAN/EM doctor said he believes it is because he doesn't detox (low antioxidants) all those chemicals as well as we do. Our painter says most paint companies now have low odor paints. I will let you all know how it goes (we will stay in a hotel while they paint. I also just ordered this new filter I had never heard of.. Austin HealthMate - Sandstone 399.99 It says that in addition to the HEPA filter, it also removes chemicals in the air (HEPAs don't). I will let you know if this makes a difference in his reaction--it is a little scary. It took weeks and it didn't go away until we put a window in that bathroom (no ventilation). MOLD D. Rapp discusses mold also. We have discussed this before, so I won't repeat it, but my EM/DAN dr said that 50 years ago the medical community correlated highest mold growth to highest suicide rate. Somehow it just got dropped after that. She also discusses elimination diets and food reactions, but we are covering that in the 'peanuts' thread. Now she doesn't seem to discuss this in terms of tics, but ADHD, depression, mood swings etc... But the idea is the same: something to keep in mind for your own child. Claire