photosensitivity

[deagar]

Does anyone know if there is any type of protective eye wear that a child can wear when watching a movie at theatre or when they go to a friends house and all the friend wants to do is play video games on their CRT screen? I don't know for sure if my son is photosensitive or not because we haven't been able to eliminate screens for a week (my husband isn't supportive and thinks I'm crazy). We have switched a lot of our screens to LCD and I limited TV, video etc. when he is in my care. I do know that over Christmas break my husband took my son up to our cabin while I stayed back a few days dealing with an unexpected death in the family and when I joined my husband and son, his tics had increased. I know the weather outside wasn't condusive to playing and therefore video games came into play a lot with rooms that weren't well lit. I don't know if this is what triggered it or if it was time to "wax". Either way I was wishing that there was some type of glasses that were available for photosensitive eyes. Thanks - Deanna

[faith]

I am just curious if the increase in tics subsided when he was back from the cabin and back to usual activities in your home. May I also ask what his tic was that increased?

 

I tried the no screens a little while back (no computer or tv, we don't have any lcd except for computer laptop) and I didn't really note any significant improvement. My husband was on board with this because I made him read some of the explanations on the threads from Claire. And the "technical explanation" was something he could clearly understand), so maybe you could try that.

 

One interesting thing did happen tho, after I didn't see any real improvement, he opened my laptop (which is lcd screen) and started playing some "club penguin" game. He clearly started blinking alot, which he wasn't doing previously. I was so troubled that I practically pulled him off his stool to stop playing. Although, interestingly, it did not happen that significantly again. My thoughts was that it wasn't the screen, but the actual "game", i.e. colors, movement, flashing. I don't know. Since then he does computer stuff, but he hasn't put that game on again, as he is into something else now. We don't have any video games here except for that type of thing, so again, stumped.

 

I do think I may want to try that again, tho (the no screens trial) Sorry, don't know about any glasses, but that sure is a good idea. And now that you mention it, once when he was playing indoor basketball under flourescent lighting in school gym, I tried to convince him to wear sunglasses while he was playing thinking it might help a little, since at the last practice he was really ticcing alot, and my husband was even upset. I said we would tell the coach that his eyes were bothering him from the brightness. But he wouldn't go for it.

 

Thanks

Faith

[deagar]

Faith:

I can't really say that the tics subsided once we got home. The tic that began was something he does with his mouth that somehow causes injurty to the inside of his mouth. We haven't figured out how he does it because where the sore is, is almost behind the molar in the joint area where the mouth opens and closes. Anyways, as soon as that tic starts up, I always increase his medicne to try to control it before it gets unbearable to him. This medicine in neurontin. It is an anti-seizure medication that is also used for a lot of other things. He doesn't have seizures but it was given for the pain. It just so happens that in the past it has always slowed down his tics. So I don't know if it was the medicine or the environment change that helped. He still tics a little (mouth, some neck snaps and occassional slight vocal tic) but he is handling things pretty well so we haven't had to go to stronger medicine...thank heaven! I also have him on zinc, B6, Inositol, Magnesium (Chelate), Taurine, Calcium and a multi-vitamin. I am trying so hard to find out why this is happening and I don't want to go to any anti-psychotic drug.

Anyways, I also notice that when he plays basketball, his mouth tic is a little more severe. That is why I wonder if the flourescent lights effect him and therefore he is photosensitive. It could also be some anxiety and stress from playing ball even though he enjoys it. I just want him to be able to play like the other kids (with the unfortunate video stuff etc.) if there is something that would help so his tics don't increase because of it. I am also afraid to take him to a movie for fear things will increase. So it would be nice if there was some form of eye wear that would help but I don't think they exist.

Deanna

[ad_ccl]

You should search for some of Claire's posts on photosensitivity. She has provided a lot of info . My son is also photosensitive but seems to be growing out of it. When he was sick at the beginning of the PANDAS we could not take him into stores with flouresent lights, he is now ok. The classroom limits the lighting, turning 2 out of 3 flouresent lights off.

I think there are glasses or lenses Claire may have tried through Irlen - if you google Irlen and photosensitive you might find info.

We used blue sunglasses which the doctor had told us were the best colour for him - they were sports glasses from a regular store. I have also read about covering one eye - so wearing a patch - while playing video games - probably ok if you are home alone - you could research photosensitive epilepsy as many triggers are the same. Good Luck,

[Claire]

I have read that the photosensitivity is bi-occular, so that closing one eye helps. This is what they tell people with photosensitive epilepsy to do. So the suggestion I read was to get cheap sunglasses and pop out one lens. We did this and taped over the other lens in a movie when my son was still sensitive and it seemed to help. Can't be sure though, cuz we had started the antioxidants too, so that may have been why he was better.

 

As for Faith's comment on the games...it absolutely isn't just the screen flicker, but also can be the graphical movements of the games (and even the flashing of some games) that contribute to photosensitivity. As always, I get my information from the photosensitive epilepsy sites on what can trigger photosensitivity. All of this is buried in the threads somewhere!

 

But I am sure that the stress of some games contribute also for some children with no photosensitivity. Thus the no screens test is the only way I know to try to pin this down.

 

Claire

[deagar]

Claire:

What kind of antioxidants did you use? What kind of doctor helped you through this process? I have talked to you about photosensitivity before and had had some of the things checked out. First off, my son tested negative to pyroluria and his blood test showed that his mercury level was <5 and the low value is <OR=10 so his pediatrician said he was fine. He isn't on B2 and I don't want to add another pill to his schedule if he doesn't need it. Should I have that checked out? Any insight is appreciated!

Thanks - Deanna

[Laurie in Az]

Hi. My son is very sensitive to fluorescsnt lights especially when there is a visible flicker. He has found that wearing wrap around rose colored sunglasses makes a huge difference. I've also noticed that the very busy computer games greatly increase his tics. He is more or less ok using the computer for short amounts of time with his sunglasses on and without the hyper "shoot em up " games.

 

Laurie

[Chemar]

Deanna

 

I dont know about the glasses but I do know that having a daylight lamp on in the room has always been helpful to my son . He doesnt have very high photosensitivity, but we have definitely noticed that it increases if the room is darkened and the flicker flashing happens. Movie theatres are a big trigger for him, with darkened room, much flash/flicker/, loud noise, and many chemical smells

[deagar]

Chemar:

What is a daylight lamp?

 

Anyone:

Does anyone know of a way to help with theatre movies? Maybe just have the one eye covered? Anything else? Also, I am assuming that some kids tic more when viewing and it goes away once they stop and others have a prolonged effect of increased tics after they stop viewing? Thanks!

[Chemar]

Deanna

 

a daylight lamp is one that has one of the daylight simulating lightbulbs in it (Full Spectrum Light)

 

there are specialized sites that sell these, and you can also get the bulbs at home depot etc

[faith]

Allison (and others)

re, the lights off in your son's classroom, how did you manage that? I am tempted to suggest that to the teacher, but you know, I don't want to call too much attention. She knows that he is a little twitchy, and that we are trying to get a handle on this with some docs, but am hesitant to make a big deal out of it, cause I don't want other faculty members to start asking questions. (I guess I just answered my own question!) But am curious how you got the teacher to do that. I laugh, because I know this teacher feels this is the worst class she's had as far as behavior is concerned (clowning, talking, not paying attn) so I wonder if I could make a suggestion pertaining to that- that the kids might feel calmer without the glare of flourescent lighting.

 

Thanks

Faith

[ad_ccl]

We had a fabulous teacher in grade one - my son was diagnosed with PANDAS a week before grade one started - we did not tell the teacher as he was doing well when he started - as he had been on the antibiotics for a week- but he deteriorated when off them. She knew something was up - more behavior than anything - she could not put her finger on it, she knew it was not ADHD - but he was impulsive, lacking focus, not reading at grade level ( his eyes were ticing tons). Anyway - she became a great support and we kept her updated and she was interested, when he was not able to focus we knew his body was fighting something so she would tell us at lunch and we would keep him home in the afternoon - it was a difficult year as there were so many unknowns and he was not doing well. Anyway...over the x-mas holidays we made the connection to the lights after going no screens over the holidays and then going to toysrus for his reward - he starting ticcing quite badly when we went into the store - I assumed it was excitement , I could not believe my eyes - we left then I had to go pick up something for the baby from a baby store - same thing again, but it did not make sense as there was nothing exciting about a stroller cover! One last stop was another store to buy the baby a present - he had wanted to help me pick it out - I did not want to go into the store after seeing what happened at the last stores - anyway -he really wanted to go and help pick so we went in - it is a cool store with lots of fun stuff, I was bracing myself for huge tics again but nothing happened - it made no sense. Claire suggested the lighting not excitement - and I realized the last toy store had incandescent lights.

Anyway, he recovered and then when school started up again I mentioned it to the teacher and said I hoped the lights in the classroom would not trigger anything, he was fine the first day but the second day got worse and again the next day worse, it was the teacher who offered to have them off - we also moved him to sit close to the window and she shut off all the computer monitors in the classroom. She was amazing. Tics decreased again. Once a supply teacher came and he had tics at the end of the day. So then notes were left for the supply teachers. The other kids knew the lights had to be off, and no one had a problem with it. Before starting the next grade I talked to the teacher and she was fine with it as well, same as this year. Lots of studies have been done on how bad this lighting is for kids - esp. those with ADHD.

Sorry this is such a long explanation - but I had a great teacher at the time, and now it is passed on from grade to grade. We also take in an LCD tv for the class to watch when they watch a movie - the kids think it is cool. I am now trying to get the school to purchase one - as the kids are getting bigger and need to sit at their desks - so our small one is getting too small. My doctor is writing a note so when I get that I will meet with the principal.

[Claire]

Deanna,

 

The mercury blood test only shows recent exposure, so it is good to do but not definitive. I really liked the porphoryn test that Kim posted...we had that done. Urine only, $115. Indicated current presence of toxic mercury and/or lead.

 

There isn't some blanket antioxidant name that I can recommend, sorry! We did the antioxidants based on www.spectracell.com FIA 5000 vitamin/antioxidant blood test (no dr. signature needed). He was very low in antioxidants, which strongly hints at metals (since antioxidants keep metals from accumulating), and minimally indicates oxidative stress, which would likely contribute to neuro issues.

 

Regarding colored glasses, for those who believe that approach is effective, they generally also believe that different colors affect different kids differently! We tried this, and I can't remember the name. Sheila Rogers would know, or it is also buried in my photosensitivity threads (with photosensitivity in the title).

 

Claire

[kim]

Deanna,

 

This might be what Claire is referring to, I'm not sure tho. Scotopic lenses?

 

http://www.autism.org/interview/irlen.html

[Claire]

Kim,

 

I hadn't heard the term 'scotopic lenses', but definitely it is the same "Irlen", so it must be the same. Sheila Rogers pointed me to her, and I talked to her on the phone once.

 

Thanks,

 

Claire