Claire

deleted by Claire

Heather, That is so encouraging re hours with no tics--I can't tell you how excited I am for you! It is starting to feel real... With my son, I did make sure that he understood the correlation...but ONLY once I was convinced enough to enforce some restrictions--there is something about them not missing something until they know they can't have it! I don't envy you the next week. Maybe you can give the school $100 for a party amongst all the kids who last for a month with no 'screen'...! When my son would get re-exposed (usually because he was somewhere where I wasn't, where a TV/computer game dominated the room and he just zoned in and forgot), and he would be ticcing that night, sometimes it would really bug him and sometimes it wouldn't. It was much easier when it bothered him because then he would appreciate the benefits more. I will say that once he truly got used to 'no ticcing', the tics from exposure DID bother him more, because it felt like an unnatural state for him I guess. We really worked hard on what would be okay. Again, the transition was HARD. That's why it was so excited when 10 months later I found out about LCD monitors--it took a full year until I heard about this. I talked to everyone I knew about it and it paid off--remember how I posted on one thread that 8% of the non-epileptic population is bothered by 'flicker'? I had to be forthright, because in spite of my telling my son's parents that he couldn't have TV/computer, they would let him do it for hours at their home. This changed when they understood why. Anyway, as a result of talking about it, I ran into a number of adults who said the flicker really bothered them (no one with tics though), and finally someone mentioned the LCD monitor. So I then did my research on them as a solution. And we negotiated 15 minutes every other day--his choice of TV or computer. And he did have to give up his old games like racing and anything flashing, but there were some cool new more static ones--Sims, RollerCoaster tycoon. Fortunately he never had a Gameboy or X-box. Actually it is MUCH easier for us now that he doesn't play computer, and just watches TV movies ocassionally, because getting my son off the computer after 15 minutes was usually a nightmare. TV shows on the other hand, have a distinct beginning and end. I sometimes wonder if his increased physical activity as a result also helped with stress and thus tic reduction. I think that efgh was lucky that her TV 'broke'--that must have saved a lot of anguish. By the way, my brother's son had transient tics and now he has OCD, which my brother noticed got worse after Nintendo (once I told him to start watching). Well guess what, my brother just bought his son a 27 inch TV for his room. We are so completely different as parents. He did take him off the OCD medicine which made his son fat, and now his son is slim again. His son was completely ostracized at school for a time when a number of kids found out. The pain of that has gotta be greater than no screen (I like that term, easier to say). Claire

Heather, efgh I don't normally ask for tic details, but I am curious as to what you each mean by 'improvement'. Do you mean that they went from multiple tics to one tic? Or vocal tics to just motor tics? Or the same tics but only 2x an hour vs every minute? With my son it was multiple tics (he never had vocal tics) intermittently throughout the day, to none at all. It is hard for me to recall just how long it took to get to 'no tics'. I know that you both are doing other things to help minimize tics, and especially Heather hasn't fully determined whether TV/computer is truly a trigger (as with efgh, it took us weeks/months of intermittent exposure to be 100% certain). I don't know Heather, if this holds for the whole week with your son, I suspect you have found a key trigger. Fingers crossed. I am not personally convinced though that I will reintroduce computer until his brain is fully developed. I think that this frequent up close exposure to computers or viewing large TV screens is not good for developing brains--I never had that as a child. Claire

Dear Tracy and Levin, I encourage you to read the threads on the Tourettes and tics board on Latitudes here. Many also had OCD symptoms and a number were Dx'd with PANDAS. It seems that the non-pharmaceutical approaches we have found may be helpful for some with PANDAS, based on the early feedback. Of course we have no formal studies on this, but it is great research to consider. I suggest that you read through the threads there (not just the ones on PANDAS) and ask questions as they arise. http://www.latitudes.org/forums/index.php?showforum=1 Claire

Hi Rose/MC, As Chemar said, we have such a mix even here of tic disorders vs Tourette's, and although there is overlap, it is hard to see where it begins and ends. I think your theory makes a lot of sense--for those people for whom food allergies are triggers. For those with TV/computer/flicker as a trigger, then the path is different, etc.. Or virus issues, as some suspect. First, I am a believer in certain foods triggering tics in certain kids. For those with food allergies, I still think your theory would need expansion to why they have those sensitivities, e.g. 1) Why do some people get skin or respiratory reactions and others nerve reactions? 2) What in life made them so sensitive to the foods, e.g. what immune system issue such as yeast or genetics or whatever. Claire

Heather, There was nothing special about DVD in and of itself. Samsung make 15" LCD monitor with a TV tuner for $400+ at Best Buy. You can view normal broadcast TV/cable TV/Videos and DVD's on them, as well as use them with your computer. (They have bigger ones, but they are worse for my son and more expensive) I suggested it because I assumed that you DIDN'T have an LCD monitor that also worked for TV, but rather, just one for your computer. Since most computers these days have a built-in DVD player, I was suggesting that your first attempt at "TV" be using the DVD. CRT screens refresh at a 60 Hz rate, or 60 cycles per second. The way I understand LCD monitors, they have diodes and don't change unless the image on that part of the screen changes. Thus it doesn't matter what you watch on them as far as inherent flicker. But definitely some computer games flash and flicker a lot. My point was, that if you decide that TV/Computer is a likely trigger, then my recommendation for reintroducing it is the same as for efgh: Introduce it from across a well-lit room to watch part of a movie, rather than up close using it as a computer. THis is the least visually stimulating way. If that goes well, then you can try normal computer work. My son can only do static games on the computer, like Rollercoaster Tycoon--he reacts to the rapid action games. Efgh's son, as I understand it, has no reaction to the fast games--but only when watching TV! Bottom line, is that, just like with supplements, our kids react so differently, so some experimentation is involved. It is the opposite with supplments--many find the 'lowest dosage needed' and with TV, people might want to find out the 'highest viewing time possible'. efgh, By 'across the room' I meant sitting on a coach with the TV 9 feet+ away, vs sitting too close to the screen. On the photosensitivity/flicker sites, they say the less of the 'visual field' that the screen occupies, the less likely that you will have a neurological reaction. The theory is that closer you are of course, the higher the %age of the visual field that the screen fills up. It does matter with my son. Claire

Heather, What a kind thing to say! I wish you the best in finding out whether this makes a difference for your son. Honestly, once we made the transition, the TV/Computer thing BY FAR the easiest aspect for me to deal with. I know that TV/Computer limitations are less than ideal, but I used to thank God that he 'let' me see what a difference in made for my son. Multiple tics to nothing. Just like with me finding out about heavy metals and yeast. I can just be grateful for having the path shown to me! And honestly, my son is happy, not deprived. I am trying not to be premature in rushing to conclusions, as I can see you are doing also. I am SO glad that you are doing this 'experiment' fully. I so worry that kids whose parents try this end up with TV/Computer exposure at school, in the classroom for example, so that they never truly have the full week off and thus they don't really find out their 'baseline' state without TV/Computer to truly make a judgement. My son used to come home with tics and I would go nuts thinking that he was just going to have them without a known trigger--only to find out, sometimes days later as they got worse--that the school or aftercare was reexposing him to TV against my instructions (we have to sign a form to allow our children to use computer, and I declined). Funny that you mention 'chatting more'. We instituted 'game time' instead of TV. Cards, Connect 4, Boggle, K-nex building, and would sit around playing and chatting together. It took my husband and I effort to make the time initially, and then we found we enjoyed it so much ourselves. I hear you re the TV and your husband, I had to educate mine too. In fact, we finally finished a room for his office, and the TV is now in there, so it no longer takes over our livingroom. I don't watch it, but my husband still does. Definitely keep us posted. I hope it doesn't take longer than a week for making the assessment--it may not have fully cleared his system, but you should be able to tell a lot by then. Claire edited: Re the LCD monitor--if possible, please do try a DVD movie from across the room, vs a computer game up close for the initial 'tolerance' test. And do lower the brightness (he will never notice the difference--visibility is fine).

efgh, Ahhhhh, yes, a LARGE screen is really a problem for my son. I based my own experimentation and recommendations on the photosensitive epilepsy sites, since the trigger seems to be the same. They recommend 14" or less, but since 15" is a standard, we use that. My son saw no-flicker TV on a big screen at a friend and he felt the reaction right away (I could see it also, when he came home). They recommend 3 meters away which is 9-10 ft. Heck, I grew up with a small black and white that we watched from across the room--this is perfectly fine. I think it is worth trying, though your son could just still be more sensitive than mine (that would be hard to imagine though!) Heather, I hope that you are going to do some real testing of this. I am trying to talk Sheila Rogers on writing more on this, and the more people testing it out (regardless of the results--data is data), the more informal data to catch people's attention. I keep saying, I don't think it is a panacea for everyone, but it sure is major for my son, efgh's son, and from what I understand, Jean's son. It sounds like Ronna's son was very sensitive for a time but isn't anymore. To me it avoids the social issues of tics for my son while we try to solve the underlying health issues. For him, getting outside, or listening to booktapes/CD's while building things is his new downtime. He never complains. He just doesn't want to stand out at middle school by leaving the classroom when the TV is on--so I am working this. Claire

Susanna, My son craved carbs too. That can be indicative of a yeast issue (which he had) but then so many kids crave carbs it is tough to say. My son is mildly allergic to mild, but the doctor says that he can still have yogurt. I guess it would vary and you would need to ask a doctor. If you are concerned, I can see doing one round of antibiotics to make sure that the strep is cleared--I did this myself, since my son's neurological symptoms (fears) always responded so well to antibiotics. Just be sure that you have him take probiotics 2 hours after each round of antibiotics to prevent yeast issues. You should know within 3-4 days if he improves. Claire

Hi Ausclare, We tried a little Thought Field Therapy ourselves. Tough to say whether it reduced the tic response immediately after TV or not (which is my son's trigger), but my 10 year old son found it too ridiculous and refused to continue. I am not calling it ridiculous, but that was my son's reaction. Plus if he didn't give the practitioners the 'right answer' that he was better, they made him do it over and over again until he said it helped, so he learned the fastest way to get them to 'just stop'. That technique would certainly bias the data. If you are getting a food allergy test, I really encourage you to 1) make sure you get the 150 food IgG test (for delayed allergic reaction) vs just the standard IgE test (for immediate reactions). 2) Try a yeast test. Food allergies can be indirectly causes or worsened by yeast issues. Chemar brought this up with me when I first started and I have to thank her (again) for it, as my son tested positive. 3) Consider a heavy metal test--many here have found this to be a factor after testing. I don't really know what a macrobiotic diet is? Claire

Heather, efgh Heather, Good for your town! It takes my son up to a week for the full effect of TV to be gone. However, you must realize that I figured out this correlation within a month of his sensitivity, so it may be easier for him to 'clear his system'. It is important for efgh to answer this too. I am glad to hear your son's tics are better. As for the viral drops vs the TV being the result of the improvement, that is actually easy enough to find out. If TV is the culprit, once no-TV week is over and he resumes TV, he will start ticcing more again. For my son sometimes this reaction occurred immediately (as with efgh's), and other times it took several days for the sensitivity to rebuild. For my son it helped to educate him on the correlation. If your son starts ticcing again, and you do another 'no TV week' and he improves, then you are moving closer to identifying whether this truly is a trigger. It took us multiple times of removing TV and it being reintroduced (by someone, not always us) to be firmly convinced--although attending the Stars Wars Episode 1 on the big screen for 3 hours was the closest we came to a 'neurological' test --it was quite clear. efgh, I didn't know that you tried the LCD monitor with no luck! Bummer. Did you have him sit across a well-lit room with the LCD monitor brightness turned down? Maybe my son can tolerate it occassionally because we went so long with no TV. (6 months). My son still has issues with a larger screen TV--even the plasma 'no flicker' TV. Did you try once a week for 20 minutes until you gradually saw what he could tolerate? We still go months at a time with no TV, even with the LCD monitor--now that he is out of the habit. Claire

efgh, In the yeast syndrome book, I found one line that said that capryllic acid didn't hurt health digestive tracks--but I wouldn't do it without a doctor's guidance. I give my son the low end of the adult dose. It says 4-6 capsules daily and he gets 3-4. Claire

Chemar, I agree with the chicken and egg scenario. I am certain that my own son's immune system was depressed long before he got strep (not until upper elementary), and he was rarely on antibiotics then. I personally believe that in his case the mercury from the vaccines was the genesis of it all. I do think that the interrelationship merits having the PANDAS researchers add to their investigation whether yeast is a contributing factor to some portion of the PANDAS kids symptoms, especially those that had repeated episodes of strep and thus repeated rounds of antibiotics. I won't presume to guess at exactly how it all fits together, just that I think they can affect eachother, as you also indicate. By the way, I asked my son today and he said that his energy level has been better lately (I noticed this in him myself). Yes! Claire

Hi efgh, I have noticed a couple of posts from you asking me about this. Please note that my son DOES watch TV occasionally--he just watches it from accross a well-lit room, using a 15" LCD monitor with a built in TV tuner. He has no problems with this. Since it seems to me that you have tested this enough to be as confident of the correlation as I am with my son, I highly recommend getting an LCD monitor with a TV tuner (it can also be connected to a VCR or a DVD player). As I have mentioned, Samsung SyncMaster has a 15" one for just over $400 at Best Buy. I won't 'test' my son on a normal TV until his yeast and mercury levels come back and are in the normal range. Even then, in the past sometimes the impact would cumulate and we wouldn't notice symptoms for the first two days of watching, but by day 3 it was over his tolerance. Worse, they got worse with continued exposure (but don't ask for details, my son hates that being discussed). I just don't know about the 'permanence', I sure wish I did! It has been 2.5 years for him now! I want to start having a weekly family DVD or video movie on the LCD monitor. In the meantime, Harry Potter book tapes (again and again!) still save the day. His doctor believes that this TV sensitivity will decrease as he heals, along with his food allergies. Did you ever do heavy metal or yeast testing? Since our son's (and Jean's) all react to TV, it does make me wonder whether they have the same underlying issues. I know that Jean's son tested negative for yeast on one test he took. Or is your naturopath more into treatment than into testing first? Claire

Thanks efgh and Chemar, I did buy the Vitamin Shoppe Magnesium Taurate. Now I just need a Calcium supplement without Magnesium and I can give both. I am mostly interested in it for sleep--to replace the Melatonin over time. My calcium supplement from Solaray has "Magnesium Oxide" or Magnesium Citrate". Chemar, I am little by little reading the Yeast Syndrome book. I just don't know if I can get a 'no sugar' yogut down my son! I will try stevia and vanilla perhaps. Did you do the garlic capsules? I know they recommend the probiotics, and he has been taking those supplements for months. I have a friend with chronic vaginal yeast whom I am trying to talk into this! Claire

Thanks Heather! I will call this woman this week to try to get her email. I like the idea of 'documented input' as well as phone input. How interesting regarding your own fidgeting comments! I am so glad that you healed yourself. My son never complains about the supplements anymore, I think he is grateful for them now, and how much better he feels. I was going to wait for the results to comment, but FYI I set my own visit with my son's doctor. They said it was quite common for parents of kids with these issues to go through such testing. In my case, I can get interrupted sleep and terrible respiratory allergies. My cough gets so bad around 'bad' dust that I start gagging--fortunately our own home is 'clean'--though I am still not sure re mold. With antigen shots and filters I am okay--no cough at all, but I can't help but wonder if I have some of the same underlying immune issues. As I have said before I am convinced I used to have yeast issues (frequent bladder and yeast infections, fatigue, stomach aches dermatitus). I used to just HAVE to take a nap every weekend. But doing a sugar free diet exercising a ton I think 'cured' it. Since I am doing no sugar and reduced carb, I realize that it alone may affect the yeast test results. But I am also curious about the heavy metals and vitamin deficiencies. Claire

I feel this frustration right now. Clearly some of our children had tics and/or OCD symptoms triggered by strep throat. My son had 'fears' that went away with the antibiotics the first two times (no PANDAS dx, doctors around here don't even know what PANDAS is!). Now I believe that we believe that all 3 of our kids had some issues with yeast. It is completely reasonable to wonder if the yeast is correlated to the antibiotic use. I put in a call to the head of an NIH/NIMH study to ask if they had studied yeast as a factor for PANDAS kids. I mentioned that a group of doctors found yeast one of the common underlying issues for neurological issues such as tics/OCD, and that perhaps they might wish to compare notes. (My idea is that those doctors could ask their patients if they had had strep, and she could test some of her PANDAS patients in the study for yeast/food allergies) Her voicemail response was, that it was an interesting thought, but no, they hadn't considered yeast as a factor, and wasn't looking at it from that angle. That seemed to be the end of the conversation. I am not saying that PANDAS is just yeast, but I am saying that just based on our own anectodal evidence and some logic, that it is worth some consideration that yeast could be a contributing factor in many cases. Really, people are willing to experiment with blood transfusions, but they can't do a simple stool and urine test? Sorry for my rant. I was wondering whether you might contact her with your stories--if you think this merits a further look. I heard the NIH has a ton of funding on PANDAS right now. If so, I will try to get her email--I only have her phone number. No sweat if you don't see the correlation. I just have this strong gut feeling now--I was wondering whether kids with PANDAS could benefit from these same treatments, and your stories have convinced me that this has merit. Claire

Hi Chemar and efgh (and anyone else who knows!), My son has been taking a Calcium Citrate supplement for his calcium deficiency. I know that Magnesium is important when taking Calcium, so I asked the doctor at the lab and he said that he could take Cal-Mag Citrate supplement. Now I am wondering. What is the difference between Magnesium and Magnesium Taurate? I would like to give him Calcium plus Magnesium Taurate, but don't want to double up with Cal-Mag and Magnesium Taurate. Does Magnesium Taurate totally satisfy the magnesium need if I am targeting 2 to 1 Calcium to Magnesium? Plus, why is Magnesium Taurate difference and/or better than just Magnesium? Chemar, how much Caprillic Acid did you give your son a day during the yeast detox? Did you totally stop following the yeast elimination, or do you still occasionally give it? My cousin had chronic fatigue the last I knew 8 years ago--we haven't spoke in so long. Anyway, it turns out she has had great success with accupuncture and homeopathic methods. She went through some yeast detox years ago, but it didn't seem to help. Thanks in advance, Claire

Welcome Ausclare! Many of us just found this site in the last 6 months, including me. I highly recommend reading through the various threads and asking questions--we have all learned so much from eachother. Mostly we are looking for non-pharmaceutical methods to help our children be more comfortable. Some have TS, some have tic syndromes, and many have other issues coexisting. I can't believe the level of improvement we have seen. I am so happy with the results I have seen for my son. Eveyone's path is different...good luck! Claire

Heather, I wondered what happened to you. I have been so busy too. Things took a step function change in the right direction in the last 2 weeks for us, but that is because we started a new phase--elimination of new foods he was allergic to and the capryllic acid for yeast. I think my son now is a believer, which makes life soooo much easier. Or maybe things are easier just because he is doing better and thus is easier going again, who knows! Too odd that you, Chemar, Phyl's kids all had set-backs. Chemar, Re the lunar cycle, well, I know people who trade stocks by them...who knows?? My conservative side says spring allergies, but I know enough to know that I don't know! Claire

For your poll: As you know, my son has been better. My own allergies have been worse, and I am a big believer that any stress on the system (yeast, allergies--food or dust/pollens) makes tics worse also. The only other thing I could think of is if their TV watching/computer play has increased, or that he has some new food he has been eating, or that coincidentally some issue like yeast is reoccurring. Chemar, I am sorry to hear thiS! Claire

KDW, if you use Google to search this site on Feingold, you will see a lot. A huge percentage of us notice sensitivities to artificial colors/flavors. Some, but fewer, have issues with salycites. I think that most of us also have kids who tested positive for other food sensitivities, so I recommend checking that out also. Claire

efgh, Thanks for the good wishes! How has your son been doing--you haven't posted much lately? I remember his sleep was good, how about everything else? From my EM doctor visit post, my son is only taking supplements for the deficiencies he had, including antioxidants. -Folic Acid, -Calcium -Vitamin D -Pantonthenic acid (B5) -Sellenium, -Alpha Lipoic Acid -Calcium citrate (I am checking on Calcium Magnesium Citrate with the lab, to see if they recommend it, since they didn't specify it -L Glutathione (which comes with A, C, E and some B's) -Bifidus probiotic, with some acidophilus (my son was only low in Bifidus) Also Fish oil Primerose evening oil (I asked my doctor based on Chemar/Ronna's input, and he agreed) Iron (After discussion with my son's doctor on his eating habits, I also give him iron every other day) Capryllic Acid (for his current issues with Yeast) Melatonin, 1/3 mg only, which helps with sleep Claire

Phyl, What is clostridia? Gosh, it must be frustrating though. I am sorry for your son. I guess this in someway will be a factor in their lives for a long time... Claire

Phyl, I am quite sorry to hear your bad news! Please keep in mind my own experience with my son and TV. His tics which were triggered by TV (or Computer), took almost a week to clear up--ie the disruption to his nervous system lasted that long. So if he is again sensitive to TV, please keep in mind that this may be causing the tics 'even when he isn't watching TV'. Well, maybe the TV reaction is the first indicator of a sensitized system, either from yeast or allergies. If it is the yeast, perhaps ask his doctor about capryllic acid (over the counter). My son's doctor said that both capryllic acid and nystatin are effective, and that one or the other works better for some. As for the allergies, do you have a HEPA air filter for his room? We use a HEPA filter in my son's room at night and it makes a major difference with his allergies. During spring, people with allergies to pollens can also be more sensitive to dust, so I recommend washing all his bedding too. Thanks for the heads up, I still have hope! I figure this is something that we will have to keep a close eye on and manage even if it does help, and your post just confirmed this. I am not looking for a cure since the flat screens are okay for my son, just a reduction in sensitivities so that when he has TV in the classroom he isn't set apart from other kids. Over time, flat screens will take over! Claire