Photosensitivity and Tics, biofeedback?

[Claire]

Sheila/Chemar

 

I do plan to do more follow-up re Irlen. Life is just so busy with deadlines!

 

I have never heard about braces and tics, except for a comment that each of you made. Any links on this (or the name of an old Latitudes on it--now that I have received them).

 

Actually, after learning re the occular issues of TS kids, I am wondering whether the motion of the movie may have related as a trigger (they had some visually intense scenes. From Lara: http://www.findarticles.com/cf_0/m2250/12_...054/print.jhtml

 

Sheila,

 

I am going to follow through with trying to determine how to deal with the Irlen question vs the vision/movement question. Do you have any thoughts--it sounds like two different doctors--oh man, my son will think I am a hypochondriac with so many things to try out. I am putting off the alt. med visit (and reading the Rapp book and the Feingold materials first) to investigate the visual aspect--either Irlen or the therapy.

 

Helen Irlen just didn't seem to have a very strong gut reaction to this, though she did say I could investigate if the sunglasses didn't work. The Wilkin study itself is promising--but I only have the headliners, no details unfortunately. So I will follow up.

 

Claire

[Sheila]

Claire, we have had a number of reports on anything in the mouth setting tics off--even just stainless steel spacers. Whether it is a reaction to the metal, or a case of the device or braces creating a stress on certain energy points or nerves in the mouth, or just sensory irritation the same way some people can't stand tags in their clothes, I don't know. (Of course mercury fillings and other dental procedures can be an issue.)

 

The whole visual link is very interesting. I know doctors who say light and sound sensitivity can occur with nutritional deficiencies. I'm planning that the next Latitudes, which I am trying (!) to finish up this weekend, will have an article on vision and eye tics by Dr. Melvin Kaplan. We need to bring all these ideas together. There's a lot of variations of vision difficulties out there, and I we just don't understand enough yet. You are really providing important observations. Thanks for keeping everyone in the loop as you go through this. Sheila

[Claire]

Hi Sheila,

 

Thanks for both pieces of information. I did read that a B2 deficiency can cause a sensitivity to light (from research when I was investigating my son's excema and new cracks at the corner of his mouth--also potentially caused by a B2 deficiency. Anecdotally, one poster on another board said both their child's excema and myclonus from fluorsecent lights improved.

 

Now I need to research the balance needed for absorption, as I heard that B's and zinc and mag. all need to be in balance. Fortunately they have chewable vitamins with a little extra B's.

 

Claire

[Guest Guest_efgh]

Claire, you were mentioning that in another poster there was a mention of eczema and myoclonus improving.. Was it with B2 supplementation? how did it improve? thanks in advance for your reply

[Guest Nancy]

Hello all,

 

I had also read here that braces could trigger tics, so when I found out my son needed a palate expander I was VERY nervous about. It's not a full set of braces, but it is held in place by stainless steel bands on 4 teeth, and it's an odd contraption to have stuck to the roof of your mouth for 7 months!

 

Anyway, he's had it for 2 weeks now and he's had no problems (knock on wood). I will say that he's been taking supplements for a few years and recently, especially after we increased his B1 a little, his tics are almost gone. I don't know if that's why it hasn't bothered him, but he's handling it very well, it doesn't even seem to bother him (as far as being uncomfortable).

 

This was kind of strange though - before he got the expander he had to have spacers on his teeth for a few weeks - they're like little rubber bands that make room for the bands to come. Those spacers seemed to bother him way more than the expander ever has, and within a minute after having the spacers put in I saw him making a facial tic I hadn't seen in 7 months. I was shocked at how quickly it happened, but I only saw him do it a few times that day and then he stopped. I think it just had to be a reaction to the weird feeling and maybe a little stress.

 

Anyway, just thought I'd share a reassuring story. I do think feeling such a strange sensation in your mouth could be part of what may trigger tics in these cases. I asked the orthodontist about the metal in the bands and he said it was stainless steel with a little bit of nickel, so I don't know if that's an issue or not.

 

If a child really needs orthodontia, I don't see how to avoid this issue. Just another thing that may affect some children and not others, I guess. One more thing to try not to worry about!

[Guest Guest]

Nancy, do you give Bonnie's supplements to your son? How old is he and since when has his tics been under control?

[Guest Nancy]

It's kind of a long story, but he's 8 now, starting ticcing out of the blue when he was about 5 1/2. He originally had periods of many months with no tics, but eventually became pretty steady. We did start on Bonnie's supplements and used them for about 8 months. His tics didn't go away, but I do think they helped, and his tics didn't get as intense. Then he got strep for the first time and his tics increased dramatically again. We increased the magnesium then and it really seemed to help quiet things down again. I finally started buying the vitamins myself because it was a lot cheaper and fewer for him to take. I'm very grateful to Bonnie for all the help she gave us, and we still follow her program pretty closely. His tics have been very minimal for the last 4 or 5 months. I adjusted a few things he was taking, but we also treated his allergies over the summer with something called NMT (neuromodulation technique). I really feel his allergies made his tics worse. Since then, he's had no allergy symptoms or the congestion and sinus problems he often got, so I'm crossing my fingers and if his spring allergies don't come back I'll consider it a success. We also removed dairy and try hard to avoid all the other bad stuff as much as possible.

[Claire]

Nancy,

 

I saw your post on neuromodulation before--I am very curious for your spring 'test'. I think my son has food allergies--keep us posted please. This sounds like the easiest way to get past them--vs elimination diets...

 

Claire

[Guest Guest]

Nancy, what is the vitamin regimen that you use for your son? Have you never used any medication and good to know that your vitamin regimen worked. What were the tics that he had?

Since you removed dairy totally (I presume yoghurt, butter and cheese too), how do you compensate for his calcium? Did dairy removal help his tics?

How did you treat his allergies, can you please explain more on that technique and side effects if any? thanks again.

[Guest Jennifer]

Claire,

 

I've only read a few of the posts so I don't know if this has allready been mentioned, but according to homeopathy and energy medicine Television, computers etc anything electric basically, can interfere with the body's energy flow. They have magnets you can buy that are supposed to absorb the energy so that our exposure is limited. Don't know if they work, but it might be something worth looking into.

 

Jennifer

[Claire]

Thanks Jennifer--good point about computers--I sit in front of one all day for work and wonder about that.

 

I will look into the magnets--for a small price, what is the harm--no one can see me!

 

As you know, my son gets minimum exposure right now. I don't know how he would react.

 

Claire

[Chemar]

When my son was in a severe tic mode, shortly after coming off meds, the OCD and SID were also very strong and he was reactive to just about EVERYTHING

 

The therapist who does his accupuncture/biofeedback/reflexology stuff gave him these little earlobe magnets...he had a pair on each earlobe with +ve and -ve poles in each pair(front and back of lobe) and they adhered.

 

Well, whenever he was having a problem with any of his symptoms, he had to simply squeeze the magnets together.

 

The results were quite amazing...calm and relaxation, tolerance level up for external stimuli, tics and OCD stuff down.

 

I confess I dont really understand a lot of how magnetic fields and energy fields work in all this...........BUT WORK THEY DO

[Claire]

Wow, wow, isn't it great that we can stick our necks out with some of these ideas without worrying about being teased--then we really do find out what worked for people.

 

Ugh, my son said 'no' about this. I don't know what to do--eliminating wheat for a few days (now rotated back in the diet in smaller amounts--not the official way though) and even discussing taking supplements--he is reacting in the other direction.

 

Odd, because he never complains about the computer, and lately has forgotten about his sessions on his 'computer days'. And he likes the neurofeedback.

 

I hate forcing things with him, especially when they are 'experiments'. Ugh.

 

Well, he did agree to go for an Irlen test--maybe cuz it is during school!

 

Claire

[Guest Nancy]

Claire,

 

I will let you know how the allergies go in the spring!

 

EFGH,

I think it was you who asked what my son takes. As I said, it's close to Bonnie's program, I've just adjusted it a bit according to what seems to help him.

 

Morning: lecithin, magnesium, calcium, a multi that contains vitamins A, C, D, E, and all the B vitamins and folic acid, fish oil (omega-3), a little extra B1, inositol, and zinc.

 

Afternoon: magnesium, calcium, B1, and inositol

 

Bedtime: magnesium, calcium, fish oil, B1, and inositol

 

 

Since we don't usually do dairy he gets calcium supplements, and drinks orange juice and rice milk with calcium.

 

We've never used medication. He's had many and varied motor and vocal tics. Often they weren't noticeable by others, but during some peak times when they became very constant I first started looking into the supplements. I agree that kids should never be made to feel bad or ashamed about their tics, and having had mild tics for a long time myself, I know they're just one part of life we have to deal with. And I'm really impressed with how some of the kids I read about just roll with it and feel comfortable educating their friends about it. However, my son is also more anxious than many kids, and I know he's NOT comfortable talking about his tics with people, so I finally decided that if we could help minimize them without doing any harm in the process it would be better for his self esteem and well being. I understand loud and clear that others may not believe it's necessary, but I just have to go with what I feel is best for my son. Over the summer when we were treating his allergies I asked him if he wanted to continue with the vitamins and trying to help his allergies and he said he did, so we do our best to figure things out and make his overall health better. I think we've all benefitted from a healthier diet.

 

I do feel that the supplements help his mood and OCDish anxiety too, which concerns me more than the tics, really. However, we still have periods where those issues seem to intensify. I'm curious about the 5HTP, but haven't researched it enough to consider trying it yet. Overall, he's doing well, so I think we'll stick where we are for awhile.

 

You can check out the website for NMT at Neuromodulationtechnique.com. It can give you more information than I can, but basically it's muscle response testing and then instructing your body to correct the faults in your autonomic control system. It's used for lots of things besides allergies. It's noninvasive, painless and no side effects that I know of, although you'd want to discuss it with a practitioner before you decide to try it.

 

Hope that helps.

[Guest Guest_efgh]

Nancy

thanks for your long useful reply. How old is your son and when did his tics start? will check on NMT soon. What brand of fish oil do you give? Heard its not so easy to get the most authentic fish oil. similarly what calcium supplement do you give? Since my son is also off dairy, i am interested. I have been giving flax oil to my son and its probably losing its effect.. Should change over to fish oil , i suppose.

rice milk and orange juice don't contain calcium, right... I too give rice milk to my son but he is not getting calcium at all and hence was concerned.

thanks again for your valuable inputs.