Photosensitivity and Tics, biofeedback?

[Claire]

efgh,

 

You get up too early! I got up early because wanted to delete my speculation on whether continued TV/computer exposure (for kids like my son that have a known reaction) might result in any long-term impact, but you already read it and commented. I did just delete it--I don't want my question be a false alarm or cause needless worry.

 

It was just my speculation on whether it was possible to change what might be a temporary reaction to flicker that they outgrow, just as many ts kids 'outgrow' tics and kids 'outgrow' allergies to certain foods if avoided, into a more permanent reaction, by more continued exposure, just as neurotherapist claim to make permanent positive changes to brain function in ADD kids by repeated brain 'training'.

 

For photosensitive epilepsy, any search on those words will yield a ton of results. It is a flicker-induced seizure condition and it quite rare. Only 1 in 4000 people has this condition, and just a small portion of epileptics.

 

Claire

[Guest Guest]

Hello Claire,

 

I've been following your posts. I have an eight year old with TS, photosensitivity, and possibly a susceptibility to mild seizure activity as well. We also live in the SF Bay area.

 

Ive been wanting to try neurobiofeedback but have hesitated because of my concern that a provider without experience treating motor/vocal tics might make the situation worse.

 

Would you share with me the name of the provider you're using and keep us posted on how your son does? I'd be intersted in hearing from others who have tried it as well.

 

Best of luck to you and your son,

Lucia

[Claire]

Hi Lucia,

 

Did you see the neurotherapist link? I sent emails to all of them until I found the one who claimed the most experience.

 

Unfortunately, we stopped neurotherapy after about 2 months, so I can't offer you a positive recommendation. I don't think our lack of a positive experience should hinder you though. My son's situation is different, because his normal state doesn't have tics, just when exposed to computer. Well, in any case, it interfered with his concentration at school and was suddenly sleepy a lot. He had never had those problems before--ever. The practioner thought it was that he had an overresponsive system and asked me to wait it out. After 4 weeks of agony where he couldn't focus in class (I teach him math so I saw it directly, in addition to his complaints), I asked the doctor to change the protocol to correct his new 'add' type of reaction. The doctor told me that he would do so, but that the new protocol would risk creating tics in his normal state. Given that my son doesn't have tics in his normal state I was shocked--the implication was that my son's final condition could be worse than when he started. We quit that day.

 

I am being upfront and direct with you here, but will delete my post once you respond that you saw it. I don't want to give ACN a bad name due to one experience, which is either unique to my son or our practioner.

 

So the bottom line is that I found no one in the Bay Area, from Walnut Creek to Menlo Park to Saratoga claimed to have significant experience with tics (more incidental) and definitely not with photosensitivity.

 

I am so sorry I don't have better news for you. On the other hand, I am very hopeful about the diagnostic protocols that people have discussed here.

 

Have you tried an LCD monitor for the photosensitivity? Is this something you have observed over time (like me), or did you actually have him tested? Is he still able to watch TV etc?

 

Claire

[Claire]

My son had an eye rolling tic tonight. I asked what happened today and sure enough, he had been watching a little TV in aftercare (the whole group watches it for 1/2 hour daily and he tries to stay away). Unfortunately, he said it was interfering with his ability to read his book, because he would roll his eyes up and lose his place.

 

It just reminds me of how hard this will be next year.

 

Something else, after talking to my neighbor with mercury and yeast issues like we now know my son has, it was quite revealing and sad to hear an adult who is quite analytical discuss how foggy she got, and the anger she would sometimes wake up with from these toxic things going on with her body. She didn't have the tics, but the mood swings and concentration issues. She had the same low antioxidants.

 

I think it was Heather that gave supergreen to her son for antioxidants? My neighbor said supergreen seemed to help her also. She said to keep the body alkaline with greens.

 

I still post status here, because now that we know that my son has so many of the same underlying issues as others in this 'spectrum', I think we have finally identified the underlying cause--and that is important to note on this thread.ie his TV/Computer/Movie reaction was a symptom. Even so, it put him on a different, more comfortable path while we figure the rest out.

 

Claire

[Heather]

Claire,

 

Has your doctor said what he will use to get rid of the metals? I know I have mentioned this several times but I have done so much research on different methods of detoxing the metals and I believe that the NDF is the most effective and powerful substance to use. If you read some of the articles it is even found to be better than the prescription treatments. Some of the sites show comparison charts of the most common chelators. I know it is expensive....1 fluid ounce was $160.00 Canadian which I think was about $125.00 American, however, I can vouch that it is well worth the money for the quick and effective results. At a few drops a day you have more than enough to do the detox. My son is almost tic free at this point. Over this past weekend and March break there were many social situations where certain trigger foods were unavoidable (hockey party, day of skiing with friends, pizza party last day of school, etc.) Anyway, he hardly reacted at all to any of these foods which would normally set him off at least a little. He has only been on the NDF for 2 months and only at 1 drop a day (1/4 of the full dose).

[Claire]

Heather,

 

I don't meet with his doctor until next week. I absolutely plan to ask him about NDF. Do you have a link I could provide, just in case he isn't familiar with it. I do appreciate your strong recommendation.

 

You haven't posted much lately, glad things are going well!

 

Claire

[Guest Jean]

Hi Heather,

 

I'm very glad to hear that your son almost tic free. Did he have eye rollings before? Do you let him watch TV or play with computer? They may not be triggers for him though, but I just would like to understand. Thanks!

[Guest Guest_efgh]

Heather

 

Great to know that your son is doing great. Does your son have dairy these days? Wanted to ask you how you compensate for his fat otherwise?

 

thanks.

[Heather]

EFGH,

 

No, my son doesn't have dairy at this point but getting enough FAT is not something that I am concerned about at all. There is fat is sooo many other foods (meats, breads, etc). Calcium is the main concern with no dairy and he gets that from the coral calcium water and a calcium supplement.

 

Jean,

 

Yes, he watches TV and does computer on a regular basis. I do think it may have been a trigger at one point (although I am not sure) since he used to tic more when he would watch TV. Since his drastic improvement in the last 3-4 weeks, it doesn't seem to bother him at all. He never did do the eye rolling tic but he had many other vocal and motor tics.

 

Claire,

 

I am running out this morning for a couple of hours but will post a good thread for the NDF when I come back. Want to find the best one as there are several.

[Guest Guest_efgh]

Heather

 

Nice of you to have posted the details. Glad that your son is doing well. Your posts give all of us a lot of motivation and encouragement.

How much fish oil do you give your son ?? How many times do you give it in a day..

I am a bit concerned on the mercury levels in the fish oil (though they are claimed to be pure) but my naturopath says that FISH OIL is generally THE THING for tics and TS spectrum and allergies.... Do you still give all the supplements on a daily basis to your son? Did you ever ask him if you can slightly reduce the dosage in due course?

 

thanks.

[Phyl]

efgh,

Have you seen this? http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/002726.html

 

I believe there is information on the safety of fish oils in there.

[Heather]

EFGH,

 

Actually, I have not even given the fish oil in a couple of weeks. We have been very busy with March break and other activities and I kept forgetting. The tics did not worsen so I thought I would see how he would do without it. Right now, the only thing he is taking is the NDF for the metals. I have discontinued all other supplements and have so for the last 2 weeks. He is better than ever!!!

 

Heather

[Claire]

Vision improvement too.

 

I hope you all don't think I am too 'anal' for trying to post on threads, but though we all keep up with eachother on our children's progress/progression, newcomers might not, so I try to do this.

 

I noticed my son reading more without the Irlen sheets. We hadn't done the eye exercises that the opthamologist recommended for his blurriness (nor used the reading glasses she recommended, since the Irlen sheets solved this).

 

I asked him today and he said that his blurriness has been gone for at few weeks now. I have to believe this is related to the overall supplementation, but clearly I have no test. It does get me hopeful on an improved visual ability to handle TV/Computer at some point, since the opthamologist said he had issues with focus/refocus on near/far, which could cause stress for rapid action items, if not the flicker.

 

I of course need to track this over time, since this blurriness was recent (Dec 03) and I have no history with him as to whether it waxes and wanes. I have to be careful that my current excitement doesn't color my attempt to be objective. Optimism is an important part of healing, but not sure how it plays with scientific objectivity!

 

 

Chemar,

 

I think it would be wonderful sometime if you posted a thread showing your own success with your son. You basically seem to have gone through the whole program (and then some) and I think that others could benefit from your son's 'success story' told in sequence--or at least the relevant part in one place.

 

I think a casual reader might just see your success with supplements, though remarkable in its own right, as out of context with all the specific steps you took re metal detox, yeast elimination, food avoidance for a time and biofeedback/accupuncture. It took me a while to piece together that you went through a whole process.

 

Not trying to burden you with another request--you help a lot of people here! Just food for thought.

 

Claire

[Claire]

I just read that mercury elevation can cause light sensitivity. (sorry, I just can't remember where I read this, so please do your own DD).

 

This is encouraging news actually, and is possibly another piece in the puzzle, as long as the sensitivity goes down when the mercury goes down, e.g. it is reversible.

 

Claire

[Guest Guest_efgh]

Claire, can you please elaborate more on this interesting and useful info. I am interested since I always feel that my son reacts to TV with tics only due to light/sound sensitivity. finding out ways to make him less sensitive to light and sound - any suggestions???

Chemar, do you have any suggestions on this.