Photosensitivity and Tics, biofeedback?

[Claire]

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

[Sheila]

Dear Claire, Your comments on tics being triggered from computers, games, and TV are very interesting particularly related to your observation that after taking them away the nervous system remains agitated for about a week. Most people who would try this would probably reintroduce them after a couple of days, assuming there is no effect. We do hear complaints about TV and videogames. Some people complain that being in a movie theatre really sets them off.

 

My kids odler now and I have no video games to refer to regarding your comment that the games give a warning to stop if tics deveop. Can you please give specifics on that? The quote and the names of a game or two?

 

Thanks for the article on epilepsy and light.

 

Something else that may be happening in some people is electric sensitivity--you can read about that on the home page and the Forum Guest section, once you have made your way through everything else! Not just the visual, but the electric currents also. And schools are becoming "wireless" with all types of radiation in the environment.

 

I'll ask Dr. Othmer about whether biofeedback can help reduce photosensitivity.

and see what response I get.

 

Also, to find a practitioner go to www.eegspectrum.com and look for links. But I would ask around for an experienced one, as you indicate. Sheila

[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

[Claire]

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

[Sheila]

Claire, Dr. Othmer suggested that you have your son checked for Irlen Syndrome. See www.Irlen.com. He also said, "Neurofeedback can help this condition. We just had another example of this in our office the other day. It is apparently a matter of decreasing sensory hyperreactivity. But if the Irlen Syndrome is an issue, then that should be taken care of first. If there is a remedy there, then it is immediate. Training the brain will be an additional help"

 

He also recommended that if this doesn't satisfactorily resolve the issues, then shift from CRT monitors on his computer to an LCD panel (I think you may have already done that), which does not have the flicker problem. Alternatively the frame rate on the CRT monitor could be increased. The TV problem could be helped by always viewing the TV while bright incandescents are on in the room at the same time. It might help to avoid fluorescent lights.

 

We have information on the site about Irlen. Look under learning disabilities. I have sent you a referral recommendation separately. Let us know how things go! Sheila

[Claire]

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.

[Chemar]

Hi Claire

 

I have been following this thread with interest and hope you will keep posting as you get further diagnosis. Your son is blessed to have such a caring Mom, and one with the desire to become as informed as possible to better help him.

 

My son is on a supplement program that has helped him enormously, but we still have to be VERY vigilent for the things that are known tic triggers in him.

The games, computer, TV and movie theatres are such and we have found that using those new "daylight" lamps helps a lot.....the darker the room, the worse the photosensitivity seems to be ....and also thge nature of the game or show...for example those simpler games that dont have explosives or lots of flashing, moving stuff dont seem to set off his tics like say a war game, or one with lots of motion.

 

As he is 14 now and does like to go to the movies with his friends, we have learned that increasing some of his supplements by giving the extra dose before the movie seems to help him a lot.

 

I wish you all the best in your quest to find the answers to help your child, and do encourage you that there is always hope. My son has gone from having severely disabling tics and OCD to very mild tics and almost non-existant OCD....I attribute this to answered prayer and the pursuit of natural treatments instead of pharmaceuticals.

As a footnote, my son has derived enormous benefit from biofeedback and accupuncture.

 

Cheri

[Guest Robin O]

chemar, what are daylight lamps, my son also has problems with TV, computers, etc. I dont think I could take away TV etc. I do try to limit the amout he watches.

Could you explain the lamps. Robin

[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.

[Sheila]

Claire--Thanks for all your helpful information.

 

I wrote to Helen Irlen, who discovered what is now known as Irlen Scotopic Sensitivity Syndrome (or Irlen Syndrome) and explained that we had been discussing a flicker-sensitive child with no reading problems or other characteristics of the syndrome.

 

This was her response:

Your question to me about a child who has no reading problems but has flicker sensitivity brings up the point that Irlen Syndrome is composed of a cluster of problems (symptoms) and an individual may have some, all, or only one problem. We see people who do not have a reading difficulty but have light sensitivity, do not have a reading difficulty but get headaches, etc., etc. So flicker sensitivity can possibly be an issue that can be helped or controlled by the use of appropriate color with Irlen Filters. The fact that the child does not have reading problems is irrelevant.

 

She also offered to speak with you personally. Please write to me at Sheila@Latitudes.org if you are interested and I'll give you her phone number.

 

Sheila

[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

[Chemar]

Hi

Sorry...work has been hectic so i havent been posting much.

 

Yes, the daylight lamps are the ones that you see advertised with full spectrum lightbulbs.

 

Claire, as to the supplements, I use Bonnie Grimaldi's research as the basis for the regimin i have my son on......and I have refined it to suit his specific needs.

 

I use a number of different brands and have basically two criteria

They must be pure (no artificial color, flavor, propylene glycol or other "fillers")

and they need to fit my budget which is very tight.

 

The combinations that I give come close to the overall doses recommended in Bonnie's original research http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

and I have added some other things that she also now recommends in her new program http://www.BonnieGr.com and ones that I have determined to be good for my son from my own research and enquiries

 

I give a basic morning group of

 

1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1)

1 combo flax/borage/omega-3(fish) oil plus 1 Lecithin blend acetylcholine

1 combo cal/mag/zinc

1 taurine

2 ginko biloba(for ADD)

1 St Johns Wort (for OCD)

1 l-Carnitine

1 Royal Jelly

1 GABA (for OCD etc)

 

 

in the evening he gets

 

1 5HTP (for OCD-)

1 Inositol(for OCD-)

1 Evening Primrose Oil

1 Methionine

1 coQ10

1 GrapeSeed extract

1 Bilberry(for vision)

 

(The doseage of the supps depends on age and body weight so I have not included it here as my son is 14yo and >150lb)

 

That is the basic outline of what he gets, and of course we watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and i try to make most things from scratch and use honey and maple syrup for flavor.

 

It sounds overwhelming but once you get into the routine, and start reaping the benefits, it is SO worthwhile. I actually dispense the pills into Ziploc snack bags and do a week's worth at a time then label them "morning" or "evening" and so it makes it easier

[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

[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

[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