Claire

Bumping up for newcomers--we seem to have a few. Claire

I think the nature vs manipulation question is always difficult. When they are emotional, I assume it is sincere (since my son never threw tantrums, I trusted tears.) In my opinion, for some children bedtime routines are highly important for them to unwind and feel loved and get undivided love and attention. This is true whether they are 9 or 5. I know it can be very inconvenient for the parent, but this is one time that I would probably 'give in'--I think in the end it takes less time. I always had these wonderful Barnes and Noble's Aesop's Fables collection that took 2 minutes or less for each story. Those were for the nights when time was limited. Claire

Hi Jan Marie Welcome! Yes this is an unbelievable site. I am pretty new also, and have already found some information to make a difference. More importantly, feel I am on a good path to understand any underlying health issues. Claire

Welcome Mickey! Though this site is primarily focused on tics/TS, I find that their is more helpful info on OCD here (due to the conditions often coexisting) than on other sites. Chemar and others made a huge difference in her son's OCD symptoms through diet and/or supplements. I suggest that you click onChemar's name and read her posts, or look at the threads with OCD in the title (e.g her son takes St. John's wort and 5HTP, but never together...) Food can definitely make a difference. Milk/cheese can be a problem with those with issues with cassein (the milk protein) issues the yeast in the the dough could be a problem with those with candidas yeast issues -tomatoes can cause a problem with those with reaction to salycites. On the other hand maybe none of those is a problem for you. A good place to start with food triggers is to look at feingold.org or feingold.com (?). They have an elimination diet where you go to basic foods on the list for a bit, look for improvement then add them in. For details, search these threads for Feingold, and you might ask specific questions in those threads. Good luck, and welcome! Claire

Please give him my congratulations too! That is outstanding. I feel I know him a little from his posts, and can tell his courage and character. That is soooooooooo awesome!!!!!!!!!!! Claire

Robin, I am running off, but wanted to note something: When my son had the computer trigger for tics, it lasted a full week. You said that you think your son was set off by milk and maybe the gameboy? Try to be patient for a week--it is hard to do, but I found that my own's son system was always back to normal by then. And they didn't always even decrease at all for several days--once he was susceptible, other things seemed to set him off more easily. I am so sorry for this trying time for you! I can definitely relate to times when it all seems to hit at once. And teacher's who don't understand what is happening, can inadvertently make it much worse. It happened to my son also. He was distracted, and her punishing him for it blew his concentration for the whole day due to his reaction to it. I talked to her about it and things changed after that until he made it through that trying period. Claire

Robin, I can't overemphasize how important it is thatyou use the training mode and pick the easier songs (e.g. Boom Boom Dollar) and slow the speed way down. If it is too hard it turns everyone off before they have a chance to like it. And again the game mode actually 'fails' you and stops play if you miss so many steps in a row. I have done this with so many children now, and all but 1 liked it--setting it at just the right level was the key. What I do with my son is to note his scores occasionally--how many perfects/greats/goods, and then he watches his progression. Again, if he likes it, the newer pads tend to register hits better than the cheapies and may make him feel more successful. By the way, did you know that braintalk has an adhd/add board? I posted this there (my comments are the mostly the same, some are new), but it might be interesting to read other people's thoughts on the theories--from the rhythm to the jumping. No one else has tried it yet though. http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/004543.html So my personal theory (unproven) is that the same children who react to computer games with tics or whatever, might be the same ones who could benefit from this--ie their brains respond to the game play. On the other hand, if kids have an issue with flicker and tics, they might need the LCD monitor. In any case, I would observe closely. As for your question on frequency, the neuro/biofeedback sessions were 2x a week for 30 minutes, but I have read of people who did it daily for faster results. I would say 20-40 minutes targeting every other day--more often only if he wants it. He has got to enjoy it, or I don't think the focus is there. So if initial he only wants 10 minutes, that is just fine. Let him decide when he is ready for faster speeds or new songs. Lately I am right there to encourage him. And I would get two pads to play with him--it makes them feel good to play with someone worse than them. They even have controls such as 'hand clapping' to help you time the steps. And little on/off to turn of the 1/8 beats which are hard. Claire

I had another thought on tics and gameboys, etc... Our neurotherapist said that the neurotherapy protocols for ADD could actually cause tics in some children--whereas he didn't mention this for the other protocols. So perhaps it is indeed the stimulation zone that these games put the brain into (forgive my layman's words). He seemed concerned that the tics would go beyond just the session, which gives more credence to my concern --from someone with experience in trying to change the way kid's brains function. Claire

I started this thread in the hopes that others would eventually post things that help with ADD/ADHD over time, since it can be comorbid with tics/ts. Claire

Hi Robin, I mentioned this once here in some thread and posted it on Braintalk, but I am cutting and pasting it here for you. This made a huge difference for my son's attention.... Twice now when my son has had issues with inattention (not the hyper distraction kind), I have intentionally used Dance Dance Revolution (DDR) playstation dance pad game with him and both times it has made a significant difference. We both notice the improvement ( I teach him math, so I see it directly in what math he can do in his head. We just let a month go by without it and just restarted and again things have improved! I think of it for my son, it is a kind of 'neurotherapy', as to play it, he must focus in an optimal concentration zone. I think some know it as an arcade game--it is a playstation game played with your feet, ie on a dance pad. You follow the arrows on a screen and put your feet left right up and down or combinations of these, to 1/4 1/8 and 1/6 beats. I met a principal last year with a dyslexic child once who said he was investigation equipment very similar to DDR that had been demonstrated to help kids with learning issues. Of course the equipment is specialized and expensive. I mentioned DDR on another board. If you can get the old DDR 1 version, you can still use just the playstation 1 ($50), and a dance pad ($20) -the whole set is about $100. The only BAD thing is that the newer DDR CD requires Playstation 2 which is $180, vs the $50 playstation one. That is a bummer--I worry our original version will get scratched. I don't know why this seems to work for him vs how normal computer games work, as they require some concentration also, but maybe because of the rhythm and whole body involvement, you must really get into a high concentration zone. In any case, it works for him. It is great exercise, and great for gross motor coordination. I wonder whether it might help with left/right issues for dyslexia in the early years--almost as an intervention, but this is pure SPECULATION on my end. I can report that when we first started playing it, my son's reading speed improved by 50%, presumably from the visual tracking exercise. I think my son may be unusually responsive to computer input to his brain, but am posting this as something non-invasive that might be possibly effective for another child. On the off chance you ever try out DDR, please do the training mode, as the speed can be slowed down to the right beginner level. Also the game mode is pass/fail and can be discouraging for a beginner. I have taught many many of his friends on it and they all love it and ask to play it when they come over. It is pure fun and great entertainment/exercise on a rainy day. We don't allow other playstation games, but that is just our own house rule. I do it with him for exercise, though I am terrible at it compared to him. It is great exercise, good for my own concentration, fun, and quality time with him! Unfortunately, there isn't one website to go to to get it. I think EBX (www.ebxgames.com) might carry each component--Konami makes the CD, Sony makes the Playstations, and Kani, Mad Catz and RedOctane make the Dance Pads. Target carries the Playstations. You can also get Dance pads on the web. We bought our 3 years ago at the San Francisco Metreon, and still buy parts--over time the cheaper dance pads wear out--we finally invested in the nice ones, but I wouldn't do that until you knew your child liked it. The remarkable thing about this is that it is as appealing to my son and his friends as the sit-down games, but has all these benefits. The biggest thing I would tell to someone starting out is to please use training mode and make it just the right level. You can even replay different segments of the song if one set of steps is too challenging. They have levels of standard, difficult and challenging. Boom boom dollar is the best starter song to me. The arcade games are too hard for a beginner in my opinion. It is remarkable, my son's performance on DDR got back to his 'normal' strong level this past weekend, and guess what he told me today: He read an entire chapter (3 lessons) in science today--and was in full concentration. This is after weeks/a couple of months having issues reading it during the noisy class time, since he does independent study in science, where we would compensate at home. I must give high credit to DDR, and secondary to the melatonin for the good night's sleep. I rank the Melatonin #2, because he was still having some troubles even with a good night's sleep--though he was better. Disclaimer: my son passed the ADD test that his neurotherapist did with him on the first visit before trying our failed attempt at neurotherapy. So his attention issues were less severe than most, and they were recent, thus perhaps easier to remedy. Claire

Jean, Very interesting re Flaxseed oil! My doctor mentioned fish oil not flaxseed oil, but I will ask him his thoughts there. He is not in until Tuesday, I do need to ask whether he ran a heavy metals test or not. I don't think he did--it wasn't on the blood tests, and I didn't see it on the forms for the other tests. Claire

Thanks efgh, Your magnesium taurate is absolutely on my list to try--I haven't forgotten it. I know what you mean --- Each kid can have different and sometimes opposite reactions to the same thing, e.g your son and the passion flower. Then Chemar's husband and 5HTP vs her son. I am just slow to try things because I have been working long hours. It took me months to get the full spectrum bulbs in, and do the Irlen. I try to keep moving forward on this also...I am behind on the sleep issue and the mold. Let alone waiting for test results. Did I mention that our insurance covered all the blood tests (vitamin deficiencies and fatty acid and oxidative (?) tests at the standard 90%. Hallejujah. I haven't a clue what they mean though, I must wait for the doctor visit. I haven't heard on the other tests yet. Claire

Hi Chemar, Your situation is simply marvelous to hear! What a great thought to be in an airy house--I hope we can get to that point. I am going to start being a hypochondriac and bringing a small airfilter to places we stay with carpeting after our last experience. I am really interested to see if the improvement is sustained--I bet it will be! And your son is such a model to other kids, really! You must be so proud of him. More than anything, going to a new school and fitting in is a big challenge to teens. More input on the Melatonin--his throat still has 'phlemm' (sp) today, so I don't think that melatonin is causing the problem after all. So we will go back to the Melatonin tonight. It is remarkable to me the dramatic contrast between no melatonin and .33 mg at night! I think I mentioned once that at 1 mg he was drowsy the next day. He used to have this phlemm and it went away when he stopped eating peanuts and wheat, so I assumed it was a food allergy. Now with its return, I think it is either because he has wheat sometimes still (not much and not everyday) or because he still occasionally has peanuts--he just did this again Friday (he doesn't think about the peanut allergy, and if offered candy, he just takes it!) Thanks for the other suggestions (e.g. Passiflora). What I will do is to try these other approaches (that aren't hormones!) on weekends. The good night's sleep makes such a difference in him waking up refreshed and focused for school that I would like this to stay stable during the week for now. Claire

Robin, One other thing. As with dietary approaches and supplementation, I do think that 'one size fits all' doesn't apply here. It is so odd to me that some tic during video games and not TV, and some tic during TV not video games. And for your son, he only tics during GameBoy! I bet an EEG on flicker with a stroboscope would identify if it is the flicker (vs the action vs stress or whatever). But I figure one can tell this via observation for your own child also. Did the tics disappear once gameplay stopped, or linger a little? Claire

Hi Jean, My son cannot watch others play the games either! I guess that is similar ot issues with passive TV watching. Claire

Hi Robin, The Gameboys have warnings also--though of course the only warning for any games are for photosensitive epilepsy. In our case, the exact same trigger applies as with the photosensitive epilepsy, so those are how I guide my son's play. Theoretically, you would think the smaller screen of the Gameboy would be better. But maybe it is because it is closer to them than the TV? I know that how much of the visual field it takes up is a major factor Again, with my son, TV/Computer Game exposure 'sensitizes' him in some way past when the game is played--like food eliminations, it can take up to 7 days for him to get back to normal. So I would watch this closely--it may or may not be true for your son. I can see how some other trigger (milk) would make him more sensitive in general to triggers such as a Gameboy, so I hope that when you reintroduce the Gameboy it doesn't cause problems for him. One more thing to keep in mind--just as with allergies, for our son, sometimes it took a few days of playing before even reaction built up for us to see it visibly via tics. So I introduced computer play or TV everyother day for less time until we determined exactly what he could tolerate. Oddly, as he is older, his tolerance is lower and he reacts sooner--he basically has almost zero tolerance for CRT monitors now--so eventually we cut it out and went entirely to LCD. However, age 10 is supposed to be a peak year or something for tics, so maybe this is why. We now do Dance Dance Revolution on the Playstation with an LCD monitor daily for 30 minutes, but it is only a 15' monitor. I know there is no flicker, but I wanted to see if the action part is an issue. Somehow it doesn't seem to be, maybe because he is jumping around on the dance pad versus his whole being focused on the screen. Unfortunately, there is no LCD equivalent for a Gameboy. We struggled with the Gameboy ourselves--there was soooo much peer pressure to have one--this is the one area where kids gave him a hard time for my strictness. But we had this restriction before we even knew he had issues with computer. My husband put his foot down on the Gameboy--I would have caved in at the time ("just for carrides and planerides"). Looking back, I owe one to my husband, given our son's high sensitivity. What we did later was let him borrow my laptop (LCD screen) for long car rides. We have also bought tons of toys and puzzles that he brings on car and plane rides--I probably went overboard to compensate! He didn't miss the Gameboy since he never had it--he just didn't want to be different from friends. I have talked a lot about screen flicker, but as some have suggested, the rapid action of the games itself may stimulates tics for some. My son was definitely worse during/after stressful games. Goodness knows why other stressful situations didn't affect him--maybe it was the flicker/rapid action/stress combo. Kids are all so unique! Only trial and error can determine what is the trigger for your own child of course, and whether the effects are fleeting (less problematic) or lingering, as they are for my son. I hope it is the former for you. Good luck Robin! Claire

Not sure what thread to put this in. I got my son down to 1/3 mg of melatonin, and guess what, he stopped sleeping on the floor with melatonin--it has been 2 weeks. Then this weekend I tried no melatonin last night and tonight, and by tonight he had to sleep on the floor again. As expected, he had delayed sleep also. I tried no melatonin just to see what happens. I do this here and there and the result is the same with back to delayed sleep. However, I read that melatonin can aggravate asthma/allergies (search melatonin + allergies) and though he doesn't have asthma he does have allergies. Since he has been taking Melatonin, he has phlemm (sp) in his chest. I thought it was coincidence from have a leftover junk from a chest cold, but after 3 weeks I wondered. Anyway, that's why I am testing to see what happens with no melatonin. His lungs did seem clearer today. I will reintroduce it tomorrow night. If it gets worse again I will have my answer--I hope not. I just love the better night's sleep for him and he was so rested in the mornings! efgh--how is the mag. taurate working for sleep? How long does it take him to get to sleep now? Claire

Nancy, I think these newer TV have no flicker, but not sure. I did read that the plasma TV screens have no flicker. Philips is coming out with a 100 hz TV --it may be out in Europe already, that will be much cheaper than the flat panels (which do run about $2000), from what I have read. It 'flickers', but the rate is so high as to be out of the trigger range for the vast majority of even sensitive people. Also, size does matter, ie smaller is better--and cheaper. Less impact on the brain, and likely explains my son's most intense reaction to movies. You can get a 15" Samsung LCD monitor with TV tuner today on Bestbuy for $450. We bought one at one of their retail stores. I don't know their return policy. Ronnas mentioned on braintalk that LCD seemed not to be an issue for her son in comparison to the normal screens--it sounds like she has been observing this and seen improvement. Her comments are on Braintalks' TV and tics thread. http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/001930.html And of course efgh posted some initial positive results with no TVon another thread here. As I mentioned on Braintalk, this is all just anecdotal (except for the research on photosensitive epilepsy, and the 8% of the population having some abnormal EEG to flicker), and someday I hope there will be enough positive success with tic reduction to merit a study. Every child is different, but many of us do notice some commonalities for subgroups of kids. I personally think the up-close viewing of computers in recent years has increased the sensitivity of some children. Claire

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Heather, never worry about posting too much. Those of us here who are still in the beginning stages are so thirsty for this type of information! We really appreciate the input that you handful of parents with success can provide. I do agree that mothers need to be perceptive detectives to figure out what helps our own children. I need to call my EM to see if he did any heavy metal tests yet. I know he had a specific order that he wanted to run them in. Claire

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Heather, Is leaky gut one specific conditions from too much yeast--ie is it different from just candidas? (I will do a search for more details) Thanks so much for the heavy metals correlation, I didn't know they were related. Also, for the timeframe--to know that it is months will give me patients. I am going to call my EM tomorrow, I can't stand the suspense. I think he is waiting for ALL the results to come in. He hasn't even done more allergy testing yet until these come in, and I worry that all this work avoiding wheat and we don't see improvement because more is going on there too. Take your time on responding, I understand how tough it is sometimes. Claire