Claire

Chemar, Thanks a million. Maybe we need a dedicated thread on OCD/Tic supplements to keep you from reposting? I still have this issue of my 10 year old not swallowing pills (his dad still can't to this day unless he is really forced to do so). I called Whole Foods and they say that they have liquid 5HTP and St. John's Wort in tincture form. By the way, I saw that you mentioned lip biting in your son's past. I don't know if you read that when my son watched the movie 2 nights ago it immediately started a lip biting tic (or compulsion?) which hasn't completely run its course yet--I know it will though I agree re exercise helping a ton with my son, and this is another reason I encourage exercise over computer. That expression about climbing walls applies. Weird, I just read (bummer, I lost the link) that exercise helps in the near term, but it depletes the source of whatever it is that it releases, so that over time more exercise is required for the same effect, or they go to higher risk thrills to get the same self-medication. I just can't believe this though, and it won't change my encouraging him to exercise. Re the tics vs OCD compulsions being intertwined--I have noticed the same thing. And for my son also the OCD-type compulsions/fears are more problematic for both of us right now--since they didn't completely disappear with this recent bout of strep as they did in the past. So this is a new quest for me. I still remember the Dr. Walsh article that said OCD tendencies are easier to treat with supplements than full-blown OCD, so I am encouraged. OCD symptoms are more potentially 'personality' changing vs a few tics. And they require more constant decision making as a parent as to what to make allowance for and what not to. With fears, I ALWAYS make allowances. Once I didn't address them (only he didn't tell me about them so I didn't know) and they really got out of hand. Catching them immediately makes them manageable. His neurotherapist is a psychologist and is aware of this. I will do vitamins in parallel. As for the accupuncture, I can see the potential benefit. My son's neurotherapist tried 'though field therapy' where he tapped on the same meridians that I believe accupuncturist target, and it seemed to relax my son a bit, but it only seemed like a temporary effect and by the 4th session it had no impact. He charges a ton for that ($300+/hr), and we just can't justify the expense for something so experimental. Thanks again for all your help, Cheri! Claire

Chemar, how long did your son do biofeedback (ie how many sessions)? Does he still? Did this help mostly for the OCD symptoms or the tics or equally. I think you know we have started this. Any false paths during the biofeedback? I.e. made him too sleepy or too hyper? Did your son have any attention issues before or during the biofeedback process? Did you do the biofeedback at a different time from the supplement testing, to know which of the two helped with what? I am tempted to start supplements now for his minor OCD symptoms, but was hesitant to mix with biofeedback--I want to know what is really making each difference/success. One article here on Latitudes by Dr. Walsh said that supplements are more effective for people with OCD tendencies vs full-blown OCD, so this was encouraging. Claire

Sheila, I talked to Helen Irlen last week--thanks again for the reference. She said that Irlen syndrome really is a color thing vs a flicker thing, so she is not sure this is a fit for my son. She told me to go ahead and try the sunglasses with the computer to see if the dimming of the light alone is enough (vs color frequency screening). As you know from above, this failed--or perhaps it limited the reaction, but in any case, we won't do it again. Interestly enough, I found this summary (but no details): Wilkins AJ, Baker A, Amin D, Smith SJM, Bradford J, Zaiwalla Z, Besag F, Binnie CD, Fish DR Treatment of photosensitive epilepsy using coloured glasses Seizure 1999; 8: 444-449 If it works for photosensitive anything, there may be hope! I will keep you posted, but it would be awhile til my son and I experiment with this, given the results from last night. Helen did give me the name of a local Irlen clinician, but I am not sure if there standard tests would bring about identification. I mentioned Latitudes to her, and she said she was working on an article for you. Claire

Chemar re supplements Chemar, are all those supplements in tablets vs chewable? I am especially interested in which ones you chose for OCD symptoms. e.g. St. John's wort--what else is for OCD symptoms? I have heard about inosotil and the fatty acids. Alsoave you read anything for long term side effects? My son's tics are completely manageable so far as you know, but sometimes OCD symptoms pick up independently, mostly fears when he has a sore throat (yes PANDAS comes to mind). He doesn't fit any clinical OCD definition--he even asked his pediatrician directly once and described to him what he experienced--but still it can be frustrating. Also, I do wonder whether PANDAS-related OCD symptoms can be treated with supplements, or whether they are in another category related to immune issues. Claire

No luck with Sunglasses and movies. I tried the polarized sunglasses for the movies last night (we have been with my son in almost 2 years). It triggered a major tic. Plus he was 'wired for sound' when we came home--nonstop talking and movement, though no overt tics. It took 25 minutes on my stairstepper to bring him to normal. At least we all aren't so big on the movies though. He really doesn't care about them. Wow, after a month of peace (since repeated TV exposure in the classroom was stopped), this was definitely a risk! Claire

Hi Dan and Maureen, Don't forget to consider trying no computer or TV for a week sometime, though I know it is especially hard to do with everything else. I will keep you posted if my son's neurotherapy/biofeedback sessions make a difference. He has been to 4 now--10% of the way there. My son never got teased when he did have tics either--too young still. As for treats, as long as it tastes about as good as what the other kids have, he is basically okay. But he just doesn't like being different in any way. What I do is remind him of all the differences many of his friends/classmates have: one has a gluten intolerance, one has learning differences, one has an anxiety disorder. ie most kids have something to deal with. Then I tell him that we are committed to finding the path to make him find perfect neurological health. And, since we believe in God, we also pray for health on rougher nights. Good luck. Gloria ps I went to the health food store for the first time with my son today.

Thanks Jennifer, I thought so re just eating flaxseeds--we tried grinding them and it makes the taste pretty bitter. Oh well, I will try just giving him the oil (which he hates). Thanks for confirming where you got it. We were going to get started on organic foods anyway, but now I am doubly motivated (due to your comment on heavy metal toxicity). As for the candidas, that did occur to me-- I dismissed it too quickly, and you are right to mention it as a possibility. Your bringing it up got me to look up more on it. My allergist gave a written self-diagnostic, I will check it out for my son. Yes he was on anti-biotics more than I wanted (he kept getting bronchitis and then a double bout of strep) and then they thought whooping cough was going around his school--I think that was a false alarm. From now on, I think I will only do antibiotics for strep! It would be much easier to make these food changes (ie no wheat for 2 weeks) if school and peers didn't intervene. But at least he is motivated due to the promise of more computer/TV time. I don't know if I can credit the neurotherapist this quickly, but he watched 2 movies on a normal big TV this week, and no tics. I am only starting the diet changes now, so it can't be due to them. Thanks again Jennifer! Claire

Hi Jennifer, Thanks for all the posts, they are really helpful! I worried about this with Flaxseed oil. Did you see my other question: Have you read whether the vitamins can be derived by just chewing flaxseed and sunflower seeds? My son would much prefer this. He used to swallow the oil (with a packet of Splenda!) but now he hates it. Also, I couldn't find anywhere to order the oil on the bodybio site. Just information. Did you call them directly? After reading more about heavy metal toxicity, it says that a high carb diet can cause it. For some reason my son craved carbs over the last year--never even protein (odd, because my husband and I were doing lower carb). So this may have triggered some issues with heavy metal toxicity. I will read the other sources, but mostly I have stopped giving him the flaxseed oil and may just call bodybio on Monday. I think this whole process requires a lot of experimentation for what combination of things work best for your own child, based on what others have found that works. Thanks, Claire

I am trying neurotherapy/biofeedback for my son. The doctor also has this newer/more experimental approach called "Voice Technology", where they analyse your child's voice and give some tapping sequence for different parts of their body for fears/phobias, among other things. It is also called Voice Therapy. It isn't cheap. It costs $1600 up front--for 3 hours of treatment. It can be done over the phone from anywhere. My Doctor (clinical psychologist) is local, but we still used the phone, since his fears were at night. If it works, it is worth every penny. It sounds like black magic, but we did it for a long-standing fear of my 10 year old son's and it greatly reduced it--it is not eliminated, but under much more control. We aren't through yet, so hopefully there will be further improvement. I know it helps at the time, what I don't know is the long standing impact. I also firmly believe that video games and scary movies for children prone to any kind of fear is adding fuel to the fire. Exercise can help reduce stress and balance his moods. My son doesn't have panic attacks, but he does occasionally get fears. Like many here, I would recommend reading around the site and looking for triggers that might be causing an imbalance. Food allergies, artificial colors. Good luck! Claire

Shiela, As I have time, I keep reading more on this site. Your comment about braces setting off tics is interesting. I actually read in a book on OCD that children with OCD who have braces cannot take certain OCD medications. Sorry that I can't remember the source! My son has braces (this goes on and on, it is a moving target--the bands fit poorly so they keep restarting him, then another bracket breaks off), and I wonder if this is why he has gotten more photosensitive over the past year, with the associated tics.

Hi Robin, Thanks for the input. Someone on another site posted a great link on a ton of PANDA journal articles. This is definitely a case where one needs to find a doctor who knows about PANDAS. http://www.neurotransmitter.net/pandas.html Claire

Hi Jennifer, I found Dr. Kane's article on heavy metal toxicity and Omega 3 vs Omega 6. http://www.townsendletter.com/Nov_2002/det...xsystem1102.htm (for anyone else reading this thread) However, how do you know if your child has this toxicity--did you get the blood analysis done that this site performs, or did you just try the oils/chlorella to see if they worked? Thanks, Claire

Jennifer/Robin Jennifer, your success is amazing, and I can see how a balance of the Omega 3/Omega 6 could make a difference. In fact that worries me most about supplements, is that I may try something puts other things off-balance. I will order that combo. Right now I get cold pressed flaxseed oil, because I had read about all the studies showing how it helped with impulse issues. I found the bodybio site and will definitely order the oil--thanks! How do you think your child got heavy metal toxicity in the first place? I will do my own google search on it, but this is a new concept to me, so if you have any links, that would be great. I am excited, my next consulting project got delayed by 2 weeks, so I can finally do some new research. Sometimes I feel my son's health progress is limited by my time to do adequate research! Robin, It is tough to get the oil into my son without some cooking involved, although this reduces the potency. I put a tablespoon (currently flaxseed oil, but I will change to the one Jennifer recommended) into his pancakes and into his muffins. I put a tablespoon into the strawberry smoothies that I make him. Interestly, ground flaxseeds in the cinnamon applesauce doesn't change the taste. He used to just take a tablespoon of oil, but is no longer game for it. My husband and I mix flaxseed oil with extra virgin olive oil in dressings, but my son doesn't eat them. Oddly, he would love to just snack on sunflower seeds and flax seeds--Jennifer have you heard whether they can get enough of the nutrients this way? I have never been able to get that question answered. Thanks again, Claire.

Chemar, How does one get rid of molds--besides no potted plants in the house? As for dust, our whole family has allergies, and I have gotten those nailed down. Hardwood floors, air filters, and washing the entire bedding frequently. Also, we got a 'Roomba' automatic vacuum, which gets under the beds better and allows me to vacuum more often. Claire

Hi Shiela, Yes I would love to talk to Helen Irlen. I will email you, and I am posting to you here just because I think these threads are important to others. It is very interesting, because I gave my mother the on-line Irlen test and I think she is a candidate--she has minor reading issues plus direct light/glare has always bothered her. She won't see anyone, so I ordered her the colored overlays to try out. If they do any good, she said she will see someone. Also, you know my view on the flicker triggering ticks for others? Well, I am sure that you saw that Chemar noticed them as triggers (their was a typo in her post, but I am sure that is what she said). Plus on that Tourettes site that Jeff just posted, several people commented that their children's tics were worse after playing computer or Game Boy. I knew this couldn't be an isolated case--I think people miss it because the children usually have been playing computer for a couple of years, but elementary school age is when the sensitivity starts. So it isn't like a sudden change. Claire

Jennifer, What fatty acids supplement do you give your child? What detoxification protocol did you use--do you have a link or book name? Thanks, Claire

Dear Dan and Maureen, My own advice is that are many triggers to the tics, and it is absolutely worth spending time to track them down. My own son went from no tics to some tics to multiple tics in a short period, and I found out that eliminating computer/video game/TV for a week completely eliminated all the tics. I know I am thus biased, but you might try that with you son for a week. (It took that long for them to clear up) For others here it is foods or some combination. My son never has caffeine or straight chocolate--what a stimulant! You mentioned he was better when he had a cold--think hard on what was different that week? Was he getting more rest and/or downtime? That is important for many. What was different--somehow, I doubt it was the cold itself. Stresses induce the tics--whether from food allergies, chemicals, flicker... Finally, strep throat is something to watch for for sudden onset of tics (and OCD). The NIH has studies on these. Watch out for sore throats, especially if a strep notice is going around the school. There is way too data much to encapsulate--you just have to load up with knowledge, then watch your son and do some trial and error. Thank goodness for the internet. Lots of links here and via google. Write down those key words! With many here, I see the drugs as a last resort--I am not aware of any time pressure to start them, other than impatience for results. How can you possibly assess natural ways to avoid the tics while he is medicated? He has all the time in the world to do drugs later if all else fails. It has been over 2 years since my son first had tics and he is tic free with no drugs. Also, we are going to try neurotherapy (biofeedback) to train his brain to find the calm zone, since avoiding computer/TV is not easy. http://www.brianothmerfoundation.org/emerg...ingfrontier.htm Good luck. Claire

Cheri/Robin, I assume 'daylight lamps' are the light bulbs that provide a full spectrum of light. I see them in catalogs all the time. They are more expensive, but this is minor in the grand scheme of things--I tried it in my son's room, and will add more based on Cheri's feedback. In fact, they now have them for track lighting fixtures in addition to normal fixtures. They also help people with mood sensitivity for a lack of daylight (I knew a med student at Harvard 20 years ago who swore by using them to wake up during the winter, to trick his body into feeling more rested). Cheri, What supplements does your child take? From what I understood about an article by Dr. Walsh on this site says that Tourette's children tend to be under-methylated, but that they have minimal success from supplements. He does mention that they are under-methylated and can benefit from methionine, calcium, magnesium, B6, St. John's Wort, Kave, and Inositol. I would post a link, but the article is 'for pay'. How did you determine which ones worked for you child--is it a customized supplement and is it available over the counter? Did a specialist helped you determine this, or was this by trial and error? As for status with my son, we just met with an EEGSpectrum doctor Thursday for the first time. Starting next week he is going to use a combination of neurofeedback (train the brain to find the calm zone) and Voice Therapy (another biofeedback indicator, but with some immediate treatment of some pattern of tapping different parts of the body for more immediate calming). I will keep you posted on our success. My biggest concern is still that the monitor-based neurofeedback, in a room with the lights off, will have the opposite effect, given this is exactly what triggers my son. The neurotherapist is letting me use our LCD monitor. I found a wonderful site on how to minimize photosensitive triggers. Until Latitudees, I have only been successful in finding modifications to this from sites on photosensitive epilepsy. But from another link a neurologist sent me, 8% of non-epileptics have some abnormal reaction to the flicker. In any case, if the trigger is the same, presumably the solutions may be the same. http://www.epilepsy.org.uk/info/photo.html For movies (actually this link says discos, but other links use the same solution for movies) they recommend chromatic lenses with one lens darkened. From what I have found, these are the 'sunglasses' that darken when outdoors. By having one lens dark, I read somewhere that only half as many brain cells are stimulated, thus reducing the impact on the brain and neurological flicker from such a large screen. Finally, the 100 hz TV's will be a big help, as apparently the higher the frequency, the fewer the % of people who are sensitive. They were suppose to have just come on the market now, but I haven't seen them. Also, there is some technical trade-off between the 100 hz TV and using the LCD monitors that double as a TV, and I haven't yet gotten my arms around it. One other thing--the smaller the screen and the further away they are from it in a well-lit room, the better. New to me was that reducing the brightness on LCD screens helps--I wondered why they didn't solve the problem completely.

Thanks Sheila! (and thank Dr. Othmer also). I will need time to study and digest the Irlen information. I took an on-line "Irlen test" for my son ,and the only category with issues is the computer/video game one. By the way, one doctor that I spoke with today mentioned "Scotopic Sensitivity Syndrome". I think it may is the same as Irlen Syndrome.

Hi again Sheila, I have sent emails to the local neurotherapists on the resource list you provided--there are only 3-4 in reasonable driving range. I have asked them if they have experience with tics or OCD, since Dr. Othmer's article said that standard ADHD treatments can actually make the tics/OCD worse. One doctor responded that she had had 'success with treating tics in the few children that had them'. What is appropriate for me to ask? How many children have you treated over how long of a time period (I wouldn't even know what the right answer would be!)? Is there any way to get references? This isn't like a dentist where I would just ask friends for referral. Certainly I can request consultations and will do so, but if you happen to know (or happen to talk to Dr. Othmer), I would love to hear how much experience they should have had. Thanks again, I am so hopeful about this! This computer/TV/movie restriction is hard on my son. Claire

Hi Sheila, My friend said that every single X-box game he has bought for his son has this warning. A friend sent it to me for GameBoy (Long since lost), and it said: If eye twitching or... occurs, stop immediately." I found it on the X-Box and Nintendo sites, with links below. X-box http://www.xbox.com/assets/en-us/HardwareM...anual.pdfinside "These seizures may have a variety of symptoms....eye or facial twitching. page 2 of this link, 2nd paragraph From the Nintendo site: http://www.nintendo.com/consumer/manuals/p...ons_general.jsp Parents should watch when their children play video games. Stop playing and consult a doctor if you or your child have any of the following symptoms: ....Eye or muscle twitching... ----- Ok, now here is the catch: they now all list the eye twitching in terms of seizures: 'Don't worry, it is just 1 in 4000.' And yet, as the link I sent you points out, up to 8% of the non-epileptic population has an abnormal reaction to the flicker effect. What about that 8%?? What is the flicker of TV/Computer/Computer Games/Movies doing to them over the long term? I tried avoidance and then reintroduction of computer/TV with my son a number of times, with the same result of the tics gradually returning.But the tics often didn't come immediately, sometimes it took days for the effects to accumulate. Just like many food allergies (according to my allergist): the bucket fills up and then the reaction occurs. But complete avoidance did completely keep the tics away. The Movie Star Wars Episode one showed this flicker relationship to me in undeniable terms: My son's tics began shortly after entering and ended upon our departure hours later. I suspect that people notice movies affecting their tics more simply because the screen size is so exaggerated and magnified. My studies on photosensitive epilepsy uncovered that the larger the screen, the more intense the effect. So I think that these symptoms are just under the radar in that the effect can't always easily be identified directly. I think that this same trigger affect two families of neurological issues. My nephew with OCD had transient tics before the OCD. Do you know what his doctor said to his parents? "You will notice the tics more when he is relaxed, such as when he is watching TV or playing computer". Why didn't it strike anyone that those might actually be the triggers? (My brother says that his son's OCD is worse after playing Nintendo also). I bet that if 100 children with chronic tics/Tourettes were to avoid computer/TV completely for a week or two (I found with my son that it had to be completely to 'clean out his system' ), that a statistically significant number would greatly improve. Unfortunately, I also believe that over a period of years, that the brain is semi-permanently 'trained' for tics. Just the opposite of Dr. Othmers biofeedback positive training of the brain, this is harmful training of the brain. I have been trying to find a resource for some time that was interested in investigating this. Like some here, I was unusually diligent in uncovering the trigger(s) for my son. But other parents would likely not notice. We were lucky. I would also love someone to look at the increase if any in tics/OCD/Tourettes since the computer games were played in every home. The screen is much closer to the child than the TV. Finally, I would be interested in your view sometime of meditation vs biofeedback. Aren't the similar in many ways in that they move the person to find a calmer state? I wonder which one is easier for a child to do successfully. I have read that the patient can't look at the biofeedback screens if they are photosensitive, since they trigger the neurological program. I must go, time to get my son to bed. Thanks for the EEG resource site! And by the way, I think that the chemicals may have triggered tics in my son a couple of times--we just rarely have them around for whatever reason. I appreciate your efforts here! Thanks also for the electrical effects comment. I will observe that. It may explain why the LCD monitor (which doesn't have the same flicker rate as CRT monitors) still doesn't completely eliminate the tics, though it does help a lot. -Claire

Hi Shiela, Jeff and you both mentioned high fructose corn syrup I believe. Is that a particular trigger, or is it just that some people don't realize it is a sugar? Also, given that 'everybody else eats sweets' (my son gets them at school and aftercare--it is unbelievable to me how they keep doing this), what is your view of sugar vs artificial sweeteners (not nutrasweet, but splenda, malitol, sorbitol, our even stevia)? I am not asking from a long-term cancer potential standpoint, but from a neurological or tic trigger standpoint in general. Though I suspect it may vary from person to person, have you noticed that this is a common trigger? Thanks! Claire

hi Jeff ---re Fiengold...I went to the site you mentioned, and couldn't really figure out the diet. I saw the list of additives that she opposed--is that as specific as she gets, or is there more? She didn't have tics on her list of symptoms, but I do believe that everyone has their triggers, so whatever works for some may work for others! It is marvelous that this worked so well for your family! How bad/frequent were the tics before doing this (mild?) --Claire

Here is a link on PANDAs from the NIMH--my pediatrician also hadn't heard of this, and balked at it until I told him the source. http://www.nimh.nih.gov/events/prstrepocd.cfm My nephew has OCD, so I did this research and uncovered the above. Good luck!

I just discovered this site yesterday--it is great! I have a 10 year old son. He does not have Tourette’s, however computers and TV trigger tics. I know that Chemar discussed this in one post, but I was hoping to get a discussion started. My started getting tics shortly before his 8th birthday, and they started to get more severe (multiple face tics--motor only) over a period of weeks. It took me some time to determine that the trigger was computer games—since the tics continued to occur on days that he didn’t have games. Eliminating all computer activity eliminated the tics--but it could take up to a week to clear them up completely, much like some of the 'food allergy' triggers that I have seen discussed here. Subsequent exposure time and again showed a direct correlation---multiple times over the past couple of years, either daycare providers or the school would expose him to one or both without our knowledge and they would return--I would be so concerned that they were returning until I uncovered the source was still TV/Computer. Now everyone is in sync, so the tics are rare. I highly recommend that those of you who have a child whose tics haven't been controlled yet try to have them go for a week with no computer (that means game boy and video games too!) and TV. Does that sound impossible to some? My son has gone months and month now. You have probably heard of photosensitive epilepsy, which affects only 1 in 4000 people. What you may not know is that up to 8% of the normal population (non-epileptic) had a reaction to the ‘flicker effectâ€. http://www.john-libbey-eurotext.fr/article...29-36/index.htm I believe that there have got to be more like my son where the reaction continues days after the exposure, and takes a week to clear up totally. As I am sure that you know, many computer games warn children to stop playing if they get tics. Standard TV and computer monitors have this trigger frequency, though supposedly the flat screen LCD ones do not. It isn't that black and white though, since my son reacts to those also, though significant less so than the normal monitors. He has gotten more sensitive lately to even the LCD ones, which is why we try total avoidance right now. My issue is that computer and TV is so prevalent in the school system! He uses an electric typewriter for typing practice and for reports now. We print out internet reports vs reading them on the screen. I loaded him up with comic books and music CD's to replace the needed down time provided by TV/computer. I keep thinking that if I find other non-medicine approaches to reduce my son's suspectibility, that he could eventually tolerate the computer/TV. It will be a long road to hoe... I like the allergy theories... I also often think that some deficiency makes my son more susceptible to tics, and consider supplements, but then I worry that I will create another imbalance by such experimentation. I worry about the long term issues with taking megadoses of something, as they remind me of medicine that just hasn't been tested by the FDA?. I would definitely try them before drugs--has anyone here seen side affects from the supplements themselves? Which ones have you found most effective? Thanks everyone, and thanks Sheila for asking about my son! I still have a long way to read through all the posts on the site to cull out more ideas from you all! Claire