to:ANDY

[Andy]

Hi Claire, It's Andy and I was the guest who forgot to log in, again. I do have the doses of how much my son is suppose to take of each supplement. If you have any brand names to reccommend, I will look at them to see if they correlate to what my son is suppose to have. Thanks for the tip about adding one supplement at a time. Right now we are also looking for a good tasting olive oil that meets my son's tastes. I might have to mix everything in one of those tree bark sugars. I was dissapointed in my doctor's visit. The doctor did not want to test for the elemental analysis when I inquired. If I heard him right, he stated that there was no way to remove the mercury anyway. He is suppose to be one of the best and is reccommended so I try his steps and hope he is right. Our doctor also gave us something called Brain Sustain to give to my son. If you or anyone else out there reading this has heard or know anything about the product, I would appreciate any thoughts on it.

[Guest Guest_Jennifer]

Claire,

We have seen great improvements in Jarrod's ticcs since no tv or games on Sunday. It is amazing. If you told most people this they would think I was crazy. I have been reading about crt screens vs. lcd. I never knew about the differences. On your reply you said you used an lcd monitor with tv tuner-would you care to tell me more about what that is? Also, have you experienced or heard from any one that there is a difference in tics when viewing a movie at the theatre?

My husband was mentioning the lcd and crt screens to a friend at work and he was telling how he heard the screens did affect people differently with headaches, etc. He asked my husband if flourescent lights made a difference for Jarrod's tics ,since they flicker. We do have these lights in our basement, but told him we didn't know, we had never thought about that. Have you heard of that affecting tics.

Thanks Claire. You have been so helpful to our family by sharing your info. My husband and I are so grateful.

Thanks, Jennifer

[Guest Guest_Jennifer]

Claire,

I wanted to let you know we have seen less and less ticcing from our son since we stopped watching tv/games Sunday. It is so amazing. Most people wouldn't believe this if you told them. Thanks again for taking the time to share your info. with me and info. about your situation.

I have been reading about crt vs. lcd screens-I knew nothing about the difference before. You said you used an lcd monitor with tv tuner-what is the difference in a monitor w/wo a tv tuner? Also I wanted to ask if you had noticed or heard from anyone about viewing movies at a theatre-how does this affect tics.

A man my husband works with had heard about the different types of screen affecting people in the workplace-ex. headaches etc. He ask if flourescent lights affected Jarrod's ticcs--since they flicker--We didn't know, but we do have these lights in our basement, which is a play room area. Have you ever heard about florescesnt lights affecting tics?

 

I read your reply about playing only non-flickering video games. How do you distinguish between flickering and non-flickering. Ididn't know if you just watched it to decide or if their was some kind of info. on the box?

 

I know I have asked you a lot of questions--this reply may be on here twice-I wrote it once and didn't see it saved. Thanks, Jennfier

[sgrunin]

Jennifer,

 

I am trying to picture a flickering vs non flickering video game.

 

I can tell you 1 type of game that bothers the heck out of me and that is first person games like doom, soldier of fortune etc

 

The movement in those games drive me CRAZY..I still play them but I have to do it a little at a time..First person games are the best :-)

 

Any game I think can cause tics to get worse..You get into a game whether or not its action, adventure, war, sports etc..

 

They can be stressful when you are trying your best to get through it..

 

Stress can = tics

 

Scott

[Claire]

Jennifer, Scott, Andy,

 

I am SOOO happy for your son! Finding a way to alleviate tics is one thing, but finding a way to alleviate tics that actually cause your child pain is a whole other ballgame. I know time will tell on this one--especially as to exactly how much improvement you will see, but this is marvelous. Tell your son I am proud of him for sticking with the no screen test--this is really hard for a lot of kids to try, computers are so addicting--it shows a lot of self-discipline.

 

I also know that people don't get it--for some reason they accept that computer/TV can cause photosensitive epilepsy (after the big deal with Pokemon in Japan on TV sending 700 kids to the hospital one night), and now I even read about it causing migraines, but there isn't any mainstream documentatin on it aggravating tics....yet!

 

Ok, onto your questions.

 

1. What a great friend you have, to comment to you on the fluorescent lights! He is correct, flourescent lights flicker. And basements are the worse because there is no natural light to diffuse the flicker. Once we knew of my son's flicker sensitivity, we removed every flourescent light in the house (we had bought those energy efficient curly bulbs). We could have replaced them with normal incandescent bulbs, but instead we did the full spectrum daylight bulbs (the incandescent ones). I read in a Doris Rapp book that somewhere in Europe they replaced fluorescent lights in the classroom and sought a 30% reduction in ADHD! Of course , the faulty fluorescent lights with the noticeable flicker are the worst. These are the cheapest bulbs I could find--they aren't cheap at all! If you do them, you might just put them in your son's bedroom, playroom and bathroom--e.g.

 

2. Once I discovered the CRT connection for my son, I spoke with a number of adults and found that many of them could not tolerate the CRT screens. Given that study that showed 8% of the population having an abnormal reaction to flicker, this makes sense.

 

3. Re the LCD monitor with a TV tuner, this is what I bought (Samsung Syncmaster 15" for $449)

http://www.bestbuy.com/site/olspage.jsp?id...41&type=product

 

It was waaay cheaper than buying and LCD TV. The tuner is built-in , so it functions exactly like a TV and can take DVD or VCR input. It can also be used as a computer monitor. The only drawback , we found was that for dark movies like Batman, you must tip to screen forward more for a clearer picture.

 

4. As for big screen movies--they are the WORST for my son! They are in dark rooms and huge screens--an the more of the visual space the flickering area covers the worst. I have commented to others that seeing Star Wars was like a strobe test for my son, it was awful. And his worse tic ever was from Haunted House (we waited 18 months after Star Wars to try again).

 

I did a lot of studying of the photosensitive epilepsy sites, because they have done so much research on this trigger--then I applied it to my son. We finally did one one site recommended--we covered one lens of sunglasses and popped out the other lens and had him watch the new Harry Potter this month. He was fidgety the next day, but no tics. Even so, we will avoid them unless it is a 'must see' movie.

 

5. As for computer games which flicker and don't, you can'ttell from the box--virtually all of them have the photosensitive epilepsy warning now ('only a small portion will have seizures', I can't wait until someday they must warn about tics also). My son likes RollerCoaster Tycoon, the Sims, Mario teaches Typing, and Incredible Machines. Basically, they are static games where there is nothing flying by you and the focus isn't on moving through the game or shooting targets with the 'world moving around you', but instead on building something, or solving something. and Laser/star fight ones are the worst! Office programs (word, excel...) are very static.

 

Scott,

Hmmm, since you commented on SUCH a strong reaction to computer games, maybe you have the same issue? I agree that for many, stress = tics, in fact, your comment is the prevailing wisdom. I have a theory that stress is not the main issue, with 'dynamic' computer games. My son plays Mario teaches typing which has a ton of time pressure and stress (to make his word per minute goals) and stress but has zero reaction. However, if the game has visual movement and patterns or he plays it on a CRT screen, he will end up ticcing later. There are no studies proving or disproving this for tics. But there are a lot of studies on this same trigger for photosensitive epilepsy--and my view is that the trigger is identical. I hope someday this is looked at seriously.

 

Do you watch/play your games on a CRT or a LCD screen? If it is a CRT screen, what is the refresh rate? Can you raise it to 85 hz (the higher the hertz the better--sometimes you need to download a driver to do this.

 

I can't wait until the new 100 hz TV's are mainstream. This and the LCD computer monitors will help most kids.

 

Andy, I will respond to your post later--no time left!

 

Claire

[Claire]

Andy,

 

I have heard controversy over whether the older vaccines caused mercury and autism issues, but not on whether you can get mercury out of the system. Ahhh, maybe he meant get it out without causing other problems? My doctor was very negative on DMSA/chelation as he said he had seen too many people get worse from it. So he likes to just raise the antioxidants a bit through supplementation and slowly have it detox the metals.

 

My son's DAN doctor's solution to my son's and my elevated toxic metals was exactly the same supplements that Spectracell recommended to raise our antioxidant levels (not sure if you read, but both my son and I have elevated mercury (I have more) and low antioxidants. Our doctor says this is a slow gradual way to do it. I personally am glad that we had the test done though--it is very compelling to get a before and after picture, even if the treatment is unchanged.

 

Dr. McCandless (of Children with starving brains) is high on chelation. But even she says their gut needs to be healthy, and that can be a chicken and egg situation. My neighbor did chelation for mercury and felt much worse--she woke up with a bad yeast overgrowth the next day, so I am glad our doctor is taking the conservative route--at least for now. My son retook his mercury and Spectracell vitamin deficiency blood tests today--in a couple of weeks we will find out any improvement.

 

Okay, here are the brands--ALL are capsules, my son and I prefer them to tablets, they are easier to swallow, and easier to just open and pour into something, vs having to crush tablets).

1. OrthoMolecular products: Alpha Lipoic Acid

2. Twin Labs: B1

3. Metabolic Maintenance Products:"Deluxe Scavengers antioxidants", This is for 3 tablets total, so obviously less for 1 tablet. I put dosages for the ones you listed.

containing A, C, E, Riboflavin, Selenium, NACysteine, B6/P5P 6 mg, Co-Enzyme Q10 30 mg, L-Gluathione 100mg

4. Thorne Research P5P (more easily absorbed form of B6*) 50 mg

5. Cardiovascular Research: Magnesium Taurate 125 mg (recommended by many here) *****corrected, after efgh commented ***

 

My understanding is that the antioxidants are sort of an interdependent family, so though my son didn't test low in all of the ones in the Deluxe Scavengers, this was our doctor's preferred way to supplement.

 

Neither of us take: Biotin, Oleic Acid, Glutamine, B12

 

Claire

[sgrunin]

Hi Claire,

 

I have an LCD and a CRT..I dont really use the CRT for games anymore. I use that on my 2nd computer for video editing.

 

The LCD has a much better picture and clearer but I dont see it being better or worse than the CRT in terms of playing games..at least for me...One does not bother me more than the other. Its always the type of game that bothers me.

 

Side scrollers dont bother me either. There is a lot of movement in those also. It just seems to be the first person games.

 

I always have to have the lights on in our family room at all times..with the tv and with the computer...really bothers me when its dark and the tv and computer are bright.

 

BUT movies in theaters dont bother me at all..We went to a movie a couple of weeks ago and it didnt bother me at all.

 

The only thing that bothered me there was the lights on the ceiling. They always have a few dim lights up on the ceiling and I tend to keep looking up at them and they drive me crazy.

 

scott

[Claire]

Andy,

 

I forgot to mention that we used light olive oil (as opposed to the stronger tasting extra virgin oil oil in most of our cooking (though these days I am using coconut oil for other reasons for cooking). So much that my son was a little high in the oleic acids!

 

Star and Bertolli are good brands. They can be used exactly like any cooking oil. If you don't saute or cook with oils, then a tablespoon in a smoothie is completely flavorless.

 

Scott,

 

It is tough to describe, but it is the movement of vivid graphics or simple flicker that bothers my son. He can scroll around things with no problem.

 

As to your comment that you don't notice a difference: My son couldn't tell any affect when playing computer nor did he personally notice it afterwards. The affect for him was cumulative and lingering--unlike the immediate trigger of a specific stress might be. The only way we found out that it made a difference was to eliminate all screens, including LCD monitors, entirely for a week. Voila, he went from multiple tics throughout the day to zero tics.

 

But he was only 8, and perhaps by the time one is an adult, certain things are more 'hard-wired'. Or this may indeed not be an issue for you, since everyone is different. TV was an issue for efgh's son, but not computer. For my son it was both. Jeff and his kids have no impact from screens. I believe that triggers vary between people, but that subgroups will have the same trigger or triggers (e.g. artificial colors, screens, chlorine).

 

Also, this may not be a priority for you to change your life by experimenting with removal of foods, artificial ingredients and/or screens to find triggers for a few tics. I would suspect that you are in the majority there. A couple of people on another board used to give me a hard time for doing this. My view is that we need to respect eachother's value.

 

Nice to see you posting! It is always good to have varied input, thanks.

 

Claire

[Guest Guest_efgh]

Hi all

 

Haven't been posting a lot lately - was a bit too busy , but I was reading every post here.

 

As Claire mentioned in one of the posts, TV is a big trigger for my son's tics . Without TV , he is doing pretty good. He still has some mild tics but not obvious. Overall, behaviour, moods, sleep wise, etc he is doing great.

 

Claire, you had mentione magnesium taurate 50 mg in one of the posts in this thread. does cardiovascular research group come out with 50 mg too? mine is 150 mg and hence was wondering..

 

reg. vitamin E which you mentioned that you give 400 iu daily to your son, can you please tell me the brand ? Dr mercola has come out with a good article on vitamin E in this newsletter.

 

Others

 

How are your kids doing these days? Heather , is your son on limited TV still ? JEan, how about your son? No posts from you too.

 

take care and goodluck to all of you

[Claire]

Andy, efgh

 

Andy, the link Robin just posted said:

 

99 percent of his 503 autistic subjects, which included Asperger’s Syndrome and PDD, exhibited evidence of a metal-metabolism disorder. Their findings suggest that an inborn (genetic) error of metal metabolism may be a fundamental cause of autism and autistic spectrum disorders,and may be affecting those with ADD as well.

 

http://www.evenbetternow.com/autism.html

 

Anyway, our DAN doctor considers tics an autism spectrum disorder , and most consider OCD also.

 

Great link Robin! I will look into it...maybe try it for myself also first?

 

efgh

 

The 400 iu vitamin E is just part of the Metabolic Maintenance Products:"Deluxe Scavengers antioxidants" pill he takes. Nice catch on my magnesium taurate error. Ours is 125 mg. I corrected the post.

 

I am so glad that your son is doing so well, mine too! We just retested yesterday and in a couple of weeks I will have some hard data to work with. I am still worried about so much TV in the classroom next year, what a bummer. Other than that, life is good right now.

 

Claire

[Andy]

Claire, I want to thank you for all the information that you provided. Some of it I knew of, some of it I didn't, all of it I needed. My son's decrease of tics just increased again. We are at our wits ends. However, we had them suppressed before and we will again and hopefully this time we could repair any damage. We started the new supplement dosages and when he starts Kindergarten this August, I hope the tics will for the most part be suppressed. Here in our part of South West Florida, everything is computers. They start the kids in kindergarten. I am looking into the LCD stuff that you all were talking about. It makes sense. We are in need for another T.V so we will give the LCD a try and I will look into the one that was mentioned that could be used as a screen for T.V and computer, if I read that right (pretty tired right now), and if needed I will look into buying one for him to use in school. We are middle class at best but like everyone else here seems to think, our children deserve the best treatment what ever that treatment may be.

[Claire]

Hi Andy,

 

I am very sorry to hear that your son's tics have increased again. I do hope that you test for 'no screens' for the week to make sure that is a factor, before you invest in an LCD monitor, given the expense.

 

Yes you read it correctly. For this particular monitor, there is a built-in tuner and it can be used for both TV (full usage, including DVD, VCR, broadcast TV and cable TV) and computer. We got 15" because the smaller screen meant less visual impact--and of course they are cheaper anyway.. I checked out LCD TV's in the TV section and they were way more expensive--beyond our budget. Also, our local store started only carrying 17" ones, so we had to by the 15" online. (And we had bought one for my son to use at elementary school at one point--it became the favorite monitor of all the kids.)

 

Good luck with the supplements. I think that the similarities with our kids (low antioxidants, vitamin deficiencies and many many food allergies) is similar. Our doctor said it takes about 2 months to start noticing improvement with the supplements.

 

I just read that 25% of kids with gluten sensitivity have b12 deficiency. It was on the braintalk gluten board on the NIH conference thread.

 

I will say a prayer that you find the right path!

 

Claire

[sgrunin]

Claire,

 

Just out of curiosity..I know its been mentioned that once people have stopped with the computer monitor for a week and the child was better...

 

How do you know if it was from the monitor/lcd or from the video games themselves?

 

Just curious about that.

 

Also would your son have a problem playing a game such as Super Mario Brothers? the newer versions on the N64 and gamecube are VERY colorful and bright..not too too much movement as with other games but very bright..

 

Bright games dont bother me...I am like a kid when it comes to that...the brighter the more likely I will be drawn to it....

 

Sounds silly but simple puzzle games get me going. You have to think with them and they can get me frustrated..

 

Scott

[Claire]

Scott,

 

My son would likely have a problem with the brighter games.

 

To answer your question, I think it is so individual for each person, and so officially 'untested' that it is a matter of trial and error for each child.

 

This is exactly why I recommend not doing any screens for a week. What if the CRT flicker only is the culprit, and you remove games but not TV? What if the game flicker/movement is the culprit and you switch to an LCD monitor but continue with the games? You would falsely conclude that either the monitors or games were not a trigger because you wouldn't see improvement.

 

The process I like is very similar to the food elimination diets for those who don't go through formal IgG testing. Eliminate many known offending foods for 4 weeks (or whatever) and then add them back in one at a time and look for a reaction.

 

So by eliminating all screen viewing, they eliminate all the factors for this type of trigger. At that point they can experiment with what really is your own trigger--or if this is even a trigger at all. If they have significant enough improvement, they can either reintroduce the CRT screen at watch for ticcing increase to be sure before buying an LCD monitor. But then you need the one week no screen baseline again to 'clear the person's system'.

 

If someone is convinced that this is a trigger, they can is to introduce TV on a 15" LCD monitor in a well-lit room every other day for a limited time (e.g. 30 minutes) for the first week. THis is because TV is viewed from further away and would be less of an assault to a photosensitive person. Then if no issues present themselves, try a 'static' computer game every other day. Then try other kinds of games.

 

With our son, teachers reintroduced CRT screens without our knowledge and sometimes I went a week worrying as to why he was ticcing again before finding out. So we had lots of 'trial and error' to be 100% sure of this trigger for our own son.

 

Now, my sons plays almost an hour of LCD computer a day, and this week has been watching almost an hour of LCD TV also with no issues. This is more than I normally allow from a lifestyle standpoint, but he goes to a 7 hour day camp where they hike or bike trails all day long so it is not interfering with health/fitness. My point is that he can't tolerate 15 minutes of a CRT computer without a reaction that lasts for days, yet he can do this without no problem.

 

As far as computer games, I err on the side of safety with the ones I know aren't an issue. Once he tries a new game, it is very very difficult to take it away and none of us need the trama. With all of the expansion packs, he is quite happy with Sims and Rollercoaster Tycoon, so I just buy him more packs.

 

That same study I posted said that photosensitivity is less common in adults. So I sure hope he outgrows it. Or that eliminating his high mercury will solve the issue (mercury causes light sensitivity). Because when he goes to college, he will likely experiment much more.

 

I draw much of my own assessments from all the research on photosensitive epilepsy--there is a large body of research investigating exactly what this trigger is and how to avoid it. They even have broadcast standards prohibiting the type of flicker that sets it off--that is why I think TV is a safer medium for kids than computer games--most computer games have the photosensitive epilepsy warning.

 

Very interesting re the puzzle games! I bet my son would love those--but I think he would get too compulsive about them. He has a hard time letting go when he doesn't solve something in the time alloted.

 

I want to say again that I hope that for my son once his immune system is better and the mercury is gone, that CRT's won't be a trigger anymore. But in the meantime, he sure likes being tic-free. He has enough things to build character as it is.

 

Claire

[Guest Guest_Jennifer]

Claire,

I have been meaning to contact you sooner and let you know how Jarrod has done. With the holiday and "no screens" I have been busy-as you know. This last Sunday marked one week with no screens. Every two days I saw an improvement in the neck tic, which had become very painful. On Friday, I began to think it wasnt going to improve any more, but it did. Probably on Sat. and Sun. he did it about 10 or so times during the day.

On Sun. we saw Spiderman 2 at the theatre, I didn't notice any tics during the show but did see some afterwards. Since Tuesday, we have been watching 30 min. of tv a day on a 15" lcd tv. I am still seeing a few tics. They are not the same throughout the day. For example, when he first gets up, he may do something with his eyes a few times or his mouth. Then it is pretty much gone the rest of the day. I notice him do his neck or eyes if he gets really excited or anxious, but it is not like a continuous tic. I hope this makes since, it is hard to explain. During the 30 min of tv he seems to do a few tics at first and then maybe just a few thoughout the program. Afterwards, there doesn't seem to be a diifference in the tics compared to before the viewing.

I am wondering if maybe we should have continued with no screens for a few days later? It definitely has an effect on Jarrod, there is some connection! He improve90% or more over the week. Tell me what you think.

I have also been reading through some of the threads and read the 8-pager about photosensitivity. There was so much info. there I couldn't comprehend all of it. I did read where you felt like people may share similar subgroups for triggers. And if I'm correct, you felt like elevated mercury may be linked with photosensivity. Who do you see to have this checked? What does it involve?

Also, we have never seen an allergist and plan on seeing an environmental allergist this month. Any suggestions on what I might need to ask for or are there any certain procedures that have benefited your child?

Claire, thank you for your response which helped and encouraged us to try no screens. Your interest and responses have been greatly appreciated-THANKS! Jennifer